Directions-09 17/7/09 18:41 Page 1 DIRECTIONS · DIRECTIONS 2009 A guide to older people’s mental health services in Cardiff and the Vale of Glamorgan, including younger people

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2009

A guide to older people’s mental health servicesin Cardiff and the Vale of Glamorgan, includingyounger people with dementia.

Directions-09 17/7/09 18:41 Page 1

Pages 2 & 3

Directions has been produced by the Cardiff & ValeMental Health Development Project with contributionsand/or support from:• Cardiff and Vale NHS Trust • Cardiff Council • Vale of Glamorgan Council • Voluntary Sector Agencies • Bro Morgannwg NHS Trust • Cardiff LocalHealth Board • Vale Local Health Board

Directions includes statutory, voluntary and independent organisation’sinformation and is intended for use by Carers, Service Users and anyoneinterested in Older People’s Mental Health Services in Cardiff and the Vale ofGlamorgan. Included are directories of services and information for carers ofthose with a dementia and those who care for an older person with anothercondition such as depression.

We have tried to include appropriate and relevant information and appreciate thecontents are not exhaustive. We welcome additions, amendments and updatesto this information. All information in this publication can also been viewed andprinted from www.cvmhdp.org.uk and this will be continuously updated.

With special thanks to all the Carers and professional staff who contributed tothe compilation of this publication.

Jane Patreane: Carer & Service User Involvement Development Worker (Cardiff)Older People’s Mental HealthCardiff and the Vale Mental Health Development ProjectUnit 11, Williams CourtTrade StreetCardiff, CF10 5DQ

Telephone: 029 2022 2000Fax: 029 2023 8258Email: [email protected]

Registered Charity No. 1081806

DisclaimerTo the best of out knowledge, the information contained in ‘Directions’ is correct at the time ofpublication. The information has been supplied by the agencies contained within the publication.

Directions

Cardiff & The Vale Mental Health Development Project


Introduction

I have been asked to write an introduction to this book.

Why me?Because I am the wife of a man who had Dementia. Dementia is easy to say and easy

to write but not so easy to understand.‘Why me?’ is a very good question.

When Chris was first diagnosed there was no magical clap of thunder that turned him

from one sort of person in to another. There was no particular moment telling me that

this day or that week was the start of the disease. But like the constant ebb and flow

of sea on rocks it had continued to erode his memory.

In the early years, there were things he gradually became incapable of doing but on

the other hand there was still plenty he could do, so life, while being rather strange,

was still fairly normal. His changes were so gradual I found I was learning how to deal

with them as they came along.What I didn’t have, for a long time, was any real back up. It was only after coming

across a support group called ‘Solace’ that I found real help and advice. I found

kindred spirits and fantastic volunteer helpers who had already made this journey and

knew exactly what I was trying to cope with.

Solace is described further on this book along with other excellent support groups.

I do recommend you make use of them for no matter how supportive friends and

family may be, there is nothing like the relief and reassurance you feel when you are in

the company of people who know just how things are – even when you haven’t told

them.

It may not be necessary for you to turn the pages of this book for a long time but

when you do please try to make full use of it as there is so much here that will help

you on your way. There was nothing like this for me so I really want to sing out the

praises of Jane Patreane from the Mental Health Development Project and her helpers

who have worked so hard to put ‘Directions’ together.

Jill Grey, Cardiff

P.S. You can now also get support online from the ‘Dementia Carers Problems Shared’

website, visit www.dementiacarers.com

Introduction:by a carer...


Pages 4 & 5

Contents:

1.1. Local Services: At A Glance p6

1.2. Local Services (Cardiff & the Vale of Glamorgan) p8

Section1:Local Services Directory p6

2. National Services p28

Section2:National Services Directory p28

3. Carer Support Groups (Cardiff & the Vale of Glamorgan) p36

Section3:Carer Support Groups p36

4. Carer Assessments p40

Section4:Carer Assessments p40

5.1. Community Care—Paying for Services p455.2. Financial Help for Those Caring at Home p465.3. Care in a Residential or Nursing Home p485.4. Financial Requirements for the Cared for Person p495.5 When Caring Ceases p50

Section5:Financal Aspects of Caring p44


Contents

6.1. Mental Health Act 1983 p53

6.2 Guardianship p55

6.3 Healthcare Inspectorate Wales (HIW) p55

6.4 Mental Health Act 1983: Code of Practice p55

6.5 Mental Capacity Act 2005 p55

6.6 Protection of Vunerable Adults from Abuse and Inappropriate Care p58

Section6:Legal/Protection Issues p52

7.1. What is Dementia? p61

7.2. Young Onset Dementia p627.3. Other Late-Life Mental Illness p63

Section7:Understanding the Condition p60

8.1. Practical Guidelines for Caring for the Person with Dementia p68

8.2. Dealing with Common Problems p71

8.3. Ten Helpful Hints for Caring for Someone with a Dementia p78

Section8:Caring for a Person with Dementia p66

9.1. Depression in Later Life p81

9.2. Practical Guidelines for Caring for Someone with Paraphrenia (Late Onset Psychosis) p83

Section9:Caring for a Person with Late-Life Mental Illness p80

10. Information in Another Language p84

Section10: Information in Another Language p84

11. Are you ‘Involved’? p85

Section11:Are you ‘Involved’? p85

Booklist: Useful Reading p86

Index for Local & National Services Directories p88

Notes:Appendix p86


Pages 6 & 7

Age Concern

Alzheimer’s Society

Applied Psychologists

Awetu

British Red Cross

Care & Repair

Care & Social Services Insp. Wales

Carers’ UK

Citizens Advice

Community Advice Listening Line

Community Alarm Centre

Community Health Council

Community Mental Health Teams

Consultant Psychiatrists

Continence Advice

Crossroads Cardiff & Vale

Crossroads in the Vale

Cruse Bereavement Care

Day Hospitals

Emergency Social Workers

Holidays – Glamorgan Hotel

In-Patient Services

Journeys

Manic Depression Fellowship (MDF)

Memory Team

Mental Health Development Project

MIND

OP Liaison Psychiatric Team

PRT Carers Centre

Parkinson’s Disease Society

Practice Development Unit

Red Sea House

Solace

Stroke Association

VEST

Younger People with Dementia

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1.1 Local Services at a Glance:

Cardiff & the Vale

Cardiff & Eastern Vale only

Cardiff only

Vale only

National

Services not shown here but listed in the Local Services Directory pages include:• Dental Services • Dieticians • Equipment • GPs • Homecare (private) • Speech, Language & Communication

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Local Services Directory

The Icons:Advocacy

Assessment

Campaigning

Carers Assessment

Carers Drop-In Centre

Carer Support Groups

Counselling

Day Care Services

Diagnosis

Good Neighbours Scheme

Home, Residential & Nursing Care

Home Maintenance

Hospital Discharge

Information

Involvement

Legal Advice

Personal Security

Respite

Service User Support Group

Telephone Befriending

Telephone Helpline

Training

Transport

Vale Outreach

Welfare & Benefits Information

Young Onset Dementia

Your Key to the Iconsin Section 1:


Pages 8 & 9

LOC

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A

Please Note: from 1st October 2009 the Cardiffand Vale NHS Trust will merge with the Cardiffand Vale Local Health Boards to become‘Cardiff and Vale University Local Health Board’

Abertawe Bro Morgannwg University NHS Trustwill become ‘Abertawe Bro MorgannwgUniversity Local Health Board’

The Services as described in this handbook willnot be affected.

ADVOCACYAdvocacy services offer active support in arguingyour case e.g. issues around paying for care orhousing. See entries for:

Age ConcernAlzheimer’s Society Cardiff & Vale BranchCommunity Health CouncilsPRT Carers CentreRed Sea House

AGE CONCERN (Cardiff and Vale)

91 – 93 Caerphilly Road, Birchgrove, Cardiff CF14 4AEGeneral Enquiries: 029 2052 1052Email: [email protected]

www.age-concern-cardiff.org.ukVisit the site for further contact details andinformation including links to other sites of interest.

We promote the well being and independence ofolder people in the local area and help to securelasting improvements in the quality of their lives. Weprovide direct services, information, support andadvocacy.

Age Concern provide the following services locally:Good Neighbours Schemes: offer volunteer supportand practical help to older people in their own homes(9 schemes throughout Cardiff and the Vale). Contactthe Cardiff office on 029 2052 1052 and the Valeoffice on 01446 795632.

Hospital Discharge Service: provides short-termintensive support to older people in their own homesfollowing discharge from hospital. The serviceoperates over a 7 day period. Practical andemotional support is offered by trained supportworkers, who also provide a liaison service withstatutory, private and voluntary organisations.Contact the service on 029 2043 6699.

Advocacy Services: offer a free advocacy service topeople over sixty years of age in Cardiff and the Vale.This can include assisting people with issues aroundpaying for care, community care, health or housing.Contact the Team Leader for Cardiff and the Vale on029 2068 3683.

Ageing Well and Engagement Programme: Thisprogramme creates opportunities for people to meetand socialise.

1.2 Local Services DirectoryIn this section you will find information and contact details for organisations thatprovide services in Cardiff and the Vale of Glamorgan. Do not hesitate to give them a call if you would like to use their service or find out more information.

Section1:

This entry is continued overleaf...



Pages 10 & 11

Age Concern continued...

They are based in community settings and includephysical, recreational and educational activities. TheProgramme presents a range of large and small scaleevents providing information, demonstrations andaccess to services. Through the EngagementProgramme we aim to consult with local people agedfifty and over and to provide opportunities for themto contribute their views and opinions. Quarterlynewsletter is also distributed to members. Telephone029 2068 3693.

Counselling Service: The service aims to provide

support for people aged 50 and over who areexperiencing emotional difficulties such asdepression, anxiety and grief. The service is mobileand is offered primarily in the individual’s home.Telephone the service on 029 2052 1125. TheCounselling Service also has funding from ComicRelif until July 2010 to provide a dedicatedcounselling service to older people who are or whohave experienced abuse as an older person.

Welfare Rights Service: offers advice andassistance to claim benefits such as pension credit,council tax/housing benefit and AttendanceAllowance. The team can arrange officeappointments or home visits throughout Cardiff andthe Vale of Glamorgan. Telephone 029 2056 7883.

ALZHEIMER’S SOCIETY(Cardiff and the Vale Branch)

Oldwell Court Tygwyn Rd, Penylan,Cardiff, CF23 5DAContact: Branch Manager, Dawn John Telephone Helpline: 029 20 434 960 Fax: 029 20 49 56 56 Email: [email protected]

The Cardiff and the Vale Branch of the Alzheimer'sSociety exists to champion the rights of everyonewith dementia and those who care for them. Thebranch provides a range of services that offerinformation, support, signposting and training.

Telephone Helpline Service: Staff are available to answer questions from carers, families orprofessionals either before or after a diagnosis ofdementia. We provide emotional and practicalsupport and information on all aspects of caring. Wecan also act on behalf of carers to help them gain

access to entitled services. The helpline is open fromMonday to Thursday, 9am - 5pm and 9am to 4.30pmon Friday.

Information: We have a range of information andadvice sheets, books and DVDs ideal for both carersand professionals.

Family support sessions: Staff are available to talkto people with dementia and their relatives at theoffice base. Just ring and make an appointment andwe will be pleased to see you.

Carers' Support Groups: The Branch organises arange of carers' support groups which providesopportunities for carers to talk freely within aconfidential setting. Staff members are present ateach group and available for carers to talk to on anindividual basis. Supported carers' social events arealso held throughout the year.

Carers Welfare Grant: Limited funds are madeavailable for carers in crisis situations or to help easethe burden of caring. If you would benefit from sucha grant and funds are not available elsewhere, pleasewrite to the office giving details of how the grantwould be used and what other options have beenexplored.

Newsletter: A quarterly newsletter is produced bythe branch, which includes articles about currentissues facing both carers and professionals. If youwould like to receive our newsletter or would like tocontribute an article, please contact the office.

Training courses: We offer a range of trainingcourses and information sessions to community staff, volunteers, care home workers and any otherorganisations supporting people with dementia. Thistraining can range from a half day basic awarenesssession to a more in depth two day course for carehome staff. We are also able to tailor make coursesto meet the specific needs of your organisation. Thecourses cover a wide range of issues affecting caringfor people with dementia.

Carers Information Programme: We run aprogramme of six information sessions aimed atfamily carers of someone living with dementia. Ouraim is to provide you with an opportunity to learnmore about dementia in a relaxed and friendlyatmosphere where you will be able to discuss your experiences and ask questions.

Public Talks: Members of staff are available to talkto groups about dementia and the services weprovide. If you would like someone to come and talkto you, please ring the office for an appointment.


BLocal Services Directory

Younger People with Dementia Project (under 65years): The branch has an information and supportOfficer who works with younger people withdementia and their families offering a variety ofsupport services.

Younger People with Dementia Respite Project:This service works directly with younger people with dementia helping them access and maintaincommunity activities and hobbies e.g. visits tomuseums, shopping, swimming etc.

Cardiff Carers' Information, Support andWellbeing Bus: The Bus visits 16 local communitiesin Cardiff on a once a month rota offering practicalhelp, information and signposting to all other supportservices. Carers can call on to the Bus for a cup oftea and a chat and also enjoy an hour of reflexologyor Indian Head massage to promote relaxation andwellbeing.

Specialist day Care Service: Open Mon - Fri, 9 -5pm (4.30pm on Fri) and offers 22 places per day.A limited transport service is available.The serviceoffers people with dementia personalised care basedon their individual needs where their rights andchoices are respected. A full range of activities,bathing facilities and a two course meal are offered by fully trained staff.

APPLIED PSYCHOLOGISTS(Clinical/Counselling)

Whitchurch Hospital, Cardiff CF14 7XB Contact: Dr. Jenny McBride, Head of Psychology &Counselling ServicesTelephone: 029 2033 6114

Psychologists offer help in the assessment andtreatment of a variety of conditions, such as memory,emotional or behavioural problems and also providesupport to multidisciplinary teams, for example, intraining and staff support. Psychologists can alsoprovide specialist Counselling support to carers andare often involved in Carers’ Support Groups.Referrals are taken from any agency but usuallycome from a GP or the Community Mental HealthTeam (see entry). There is a Psychologist at each ofthe Community Mental Health Teams.

Structured Counselling Service—Every GP practice in Cardiff and the Eastern Vale of Glamorgan has acounsellor who works at the practice and seespeople with common mental health needs, normally up to six sessions.

AWETU

120-122 Broadway, Roath, Cardiff CF24 1NJTelephone: 029 2048 8002www.awetu.org.uk

Awetu strives to support all Black and Minority Ethnic(BME) people confronted by mental illness, throughthe delivery of its own services and by influencing the services provided by others in order that they areeffective and sensitive to the needs of their users. Atpresent Awetu provides home visits to those clientsthat need emotional and practical support in thehome, eg tenancy issues, accompanying clients onhospital visits, assistance with form filling etc., toenable clients to sustain independent lives byincreasing their confidence and self-esteem andsupporting them to pursue interests which willimprove their health, well-being and independence.Awetu visit individuals who have been re-admitted tohospital and have formed relationships with the majorpsychiatric hospitals and clinics in Cardiff; Awetustaff make regular ward rounds to assess the needsof BME patients, to build a relationship with peoplebefore they are discharged and to act as a resourceregarding cultural issues for the staff. Awetu providesBME Mental Health Awareness Raising Sessions.Awetu has carried out research into the mental healthneeds and access to services for BME people livingin Cardiff. People can access our services throughreferral by GP, Social Worker, Community PsychiatricNurse or Psychiatrist. If a friend or family memberdoes refer a person to Awetu they would still need tohave background details of the client via a referralform.

BRITISH RED CROSS(Vale of Glamorgan)

Breaksea Drive, Barry Island, Vale of GlamorganCF62 5TNContact: Service Co-ordinator, Joanne NielsenTelephone/Fax: 01446 745800



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British Red Cross continued...

The British Red Cross Glamorgan Branch offers adedicated day care service for older people withmental health problems in the Vale of Glamorgan.The service, located on Barry Island, which is run by NVQ Care qualified staff, is open from 9.30am-3.30pm. Monday to Friday. Transport and 2-courselunch available. Referrals to the service are currentlyvia the ‘Community Mental Health Services for OlderPeople Team’ in the Vale of Glamorgan (see entry).

They also provide a specialist Day Care service 2 days a week in the Western Vale of Glamorgan atThe Gathering Place, St Athan Community Centre,Flemington Road, St. Athan CF62 4JH. Contact MrsSusan John, Project Manager on 01446 750 893.

The British Red Cross are always looking to furtherdevelop their services in response to identified localneeds, so please give them a call to hear about thelatest developments.

The British Red Cross is the World’s largesthumanitarian organization and we are always lookingto recruit new volunteers. Check out our websitewww.redcross.org.uk or telephone 01633 245750 tosee how you could volunteer.

CARE & REPAIR CYMRU

Cardiff Office, 20 Splott Road, Cardiff CF24 4BZ Telephone: 029 2047 3337

Vale of Glamorgan Office Newydd Housing Association, 121 Broad Street,Barry, CF62 7AL Telephone: 01446 704308

The Care & Repair Service involves listening to whatthe older person wants and needs and puttingtogether a package of information and repair; withsupport to make it happen. This includes:

A Healthy Homes Check: identifying the need forrepairs, maintenance, or adaptations to preventaccidents or the worsening of existing healthconditions.

Financial information: welfare benefit check andinformation giving, help with applying for grants foridentified works to be carried out.

Administration: practical help with form filling, or obtaining builders' estimates and co-ordination of work.

Technical Assistance: information about approvedcontractors, technical surveys, plans andspecifications.

Monitoring: monitoring the quality of repairs and any building work.

CARE AND SOCIAL SERVICSINSPECTORATE WALES (CSSIW) The Care and Social Services Inspectorate Wales(CSSIW) encourages the improvement of social care,early years and social services by:

• Regulating, inspecting, reviewing

• Providing professional advice

Through our work we aim to raise standards, improvequality, promote best practice and inform peopleabout social care.

Our National teams lead on managing and analysinginformation to deliver all-Wales reviews and provideprofessional advice to improve services. The fourregions (North, South-East, Mid and South, South-West) are the focus for professional assessment andjudgement about services and organizations. Theyinspect and review local authority social services,and regulate and inspect care settings and agencies.

The Chief Inspector and our national teams can becontacted at: Cathays Park, Cardiff CF10 3NQ or bytelephone on 01443 848450 or via e mail [email protected]

The Mid and South Wales Regional Office can becontacted at: 4/5 Charnwood Court, Heol Billingsley,Parc Nantgarw, Nantgarw CF15 7QZ or by telephoneon 01443 848527/8/9 or via e mail atcssiw@mid&[email protected]

CARERS’ WALES (including Cardiff and ValeBranches)

River House, Ynysbridge Court, Gwaelod y Garth,Cardiff CF15 9SS. Telephone: 029 2081 1370Fax: 029 2022 1368Email: [email protected]

Carers’ Wales is the Wales office of Carers UK andworks with and on behalf of carers to help them

Pages 12 & 13


recognise their role and status in society. Theycampaign on behalf of carers, raising awareness ofcarers’ issues with all levels of government, serviceproviders and the wider public. They encouragesupport for carers through a network of branchesand carers’ centres. Carers Wales provides bi-lingualinformation through a series of booklets, leaflets andthe Website, and gives advice via the Carers UKCarersLine (Tel: 0808 808 7777). They also providesome training to local authorities on, for examplecarers' assessments and carer legislation.

The Cardiff and the Vale of Glamorgan branches ofCarers UK are groups of carers meeting together forinformation sharing, social events and to present theunited voice of carers at a local level. They do nothave a permanent base, but meet once a month atvenues in Cardiff and Barry. For details of the eventsand meeting times, ring Carers Wales and we will putyou in touch with the carer contact for the branch.

CITIZENS ADVICE BUREAUX

The CAB provides information and advice on a widerange of problems (including Welfare Benefit queries).The service is completely confidential and is free ofcharge. The address of your local bureau can befound below, but telephone for opening times or tomake an appointment.

Butetown - Cardiff OfficeLoudoun Square, Butetown, Cardiff CF1 5UZTelephone: 029 2034 6499

Barry - Vale of Glamorgan Office119 Broad Street, Barry, Vale of Glamorgan, CF62 7TZ Telephone: 0845 120 3756

Central Cardiff Office1st Floor, Castle House, 1-7 Castle Street, CardiffCF10 1BSTelephone: 029 2034 6490 www.cardiffcab.org

Ely - Cardiff Office91 Grand Avenue, Ely, Cardiff CF5 4BL Telephone: 029 2034 6499

Splott - Cardiff OfficeSplott Clinic, South Park Road, Splott, Cardiff CF2 2LU Telephone: 029 2034 6499

Grangetown - Cardiff OfficeGrangetown Health Centre, Cambridge Street,

Grangetown, Cardiff CF17 7DJ Telephone: 029 2034 6499

Llanedeyrn - Cardiff OfficeLlanedeyrn Community Education Centre, Power House, Roundwood, Llanedeyrn, Cardiff, CF23 9PN Telephone: 029 2034 6499

Llanrumney - Cardiff OfficeMedical Centre, Ball Road, Llanrumney, Cardiff CF3 9DP Telephone: 029 2034 6499

Trowbridge - Cardiff OfficeAbergele Road, Trowbridge, Cardiff CF3 8YH Telephone: 029 2034 6499

COMMUNITY ADVICE LISTENINGLINE

Freephone: 0800 132 737

Mental Health Telephone Helpline for anyone in needof information and support.

COMMUNITY ALARM SERVICE—CARDIFF

Cardiff Control Centre, Radyr Place, Mynachdy,Cardiff CF14 3HP Telephone: 029 2061 4852 Vale Control Centre, Brecon Court, Cornwall Road,Barry CF62 9AUTelephone: 01446 749819

The Community Alarm Service is a 24-houremergency response service provided by the localCouncil. This service offers peace of mind to allthose connected to the alarm 24 hours a day, 365days a year and enables people to call instantly forhelp. The calls are received at the Control Centrewhich is staffed by a team of experienced operatorsand mobile wardens (wardens in Cardiff only). Formore details contact the relevant telephone numberabove.



Pages 14 & 15

COMMUNITY ALARM SERVICE—VALE OF GLAMORGAN(TeleV Alarm Service)

Contact One Vale, Greenwood Street, Barry, CF63 4JJTelephone: 01446 700111

TeleV is a responsive and sensitive emergency alarmservice provided 24 hours a day, 365 days a year by the local council. It offers peace of mind andimproved personal safety and security to anymember of the community who wishes to continueliving independently.

The recently enhanced service allows you to connectinstantly to our monitoring centre in Barry, which isstaffed with a fully trained team who will tailor theirresponse to your individual needs and situation.

COMMUNITY HEALTH COUNCILS

Cardiff CHC, Ground Floor, Park House, GreyfriarsRoad, Cardiff CF10 3AFTelephone: 029 2037 7407 www.patienthelp.wales.nhs.uk/cardiffEmail: [email protected]

Vale of Glamorgan CHC, 2 Stanwell Road, Penarth,Vale of Glamorgan CF64 3EATelephone: 029 2035 0611www.patienthelp.wales.nhs.uk/valeEmail: [email protected]

The Community Health Council (CHC) is a statutoryorganisation; the independent voice of the public andthe consumers of health services. They monitor thequality of the NHS services provided in Cardiff andthe Vale of Glamorgan. This is achieved bymonitoring, consultation with the public, promotingnew developments, enabling people’s view to beheard, assisting those who wish to complain aboutlocal NHS services and through surveys on patientviews. The CHC also provides a free andindependent Advocacy Service. Please contact them for more information and assistance.

COMMUNITY MENTAL HEALTHSERVICES FOR OLDER PEOPLE(MHSOP) TEAMS—CARDIFF ANDTHE EASTERN VALE OFGLAMORGAN

Cardiff South and East Community TeamSt. David’s Hospital, Cowbridge Road East, CardiffCF11 9BXTelephone: 029 2053 6868Fax: 029 2053 6870Covers Grangetown, Butetown, Riverside, Canton,Llanrumney, Trowbridge, Rumney, Splott,Adamsdown, Cathays, Plasnewydd, Tremorfa

Cardiff West Community TeamHighfields Centre, Allensbank Road, Cardiff CF14 3RBTelephone: 029 2076 6531Fax: 029 2076 2295Covers Tongwynlais, Whitchurch, Rhiwbina, Llandaff,Llandaff North, Gabalfa, Fairwater, Radyr & St.Fagans, Ely, Caerau (Creigau & Pentyrch – LocalAuthority only, Nantgarw & Taff’s Well – Cardiff & ValeNHS Trust only)

Cardiff North Community TeamHighfields Centre, Allensbank Road, Cardiff CF14 3RBTelephone: 029 2076 6531Fax: 029 2076 2295Covers Lisvane, Llanederyn, St. Mellons, Llanishen,Heath, Cyncoed, Roath (excluding Plasnewydd),Pentwyn, Rhiwbina

Vale of Glamorgan Community TeamGardenhurst Resource Centre, Holmesdale Place,Penarth CF64 3BBTelephone: 029 2071 3770Fax: 029 2070 5933Covers Penarth, Barry, Rural Vale to River Thaw

There are four ‘Community Mental Health Servicesfor Older People Teams’ covering Cardiff and theEastern Vale of Glamorgan. These joint Health andSocial Services multi-professional teams serve thegeographical areas covered by the four Consultantsin Old Age Psychiatry (see entry) for the area servedby Cardiff and Vale of Glamorgan NHS Trust, withSenior Social Services Officers acting as TeamManagers.

Health and Social Services staff in the multi-disciplinary teams are able to draw on their specialist



skills and training in order to address a wide range ofspecific needs and treatment approaches.

The teams will assess the needs of people withdementia (any age) and older people with mentalhealth problems (over 65) and work with them andtheir carers to develop a package of care for eachsituation (which can include the purchase ofindependent services from voluntary or privateorganisations where appropriate). The process muststart with an assessment which can be done by asingle team member or a combination of teammembers where appropriate (for example, a SocialWorker and a Community Psychiatric Nurse). This isusually followed by the formation of an agreed'Community Care Plan' which describes the tasksthat need to be undertaken, when and by whom.Appropriate services are arranged as part of the CarePlan, which is monitored by the allocated 'CaseManager/Care Co-ordinator', who will keep in closecontact with the client and carer to ensure that theplan is meeting their needs.

As part of the ‘Carers (Recognition and Services) Act,1996’, carers are entitled to request that their LocalAuthority’s Social Services Department undertake anassessment of their own ability or willingness toprovide or continue to provide care when anassessment is being made of the older person’sneeds. The Act states that this Carer’s NeedsAssessment should be taken into account by SocialServices when it is planning services to supportcontinued care in the community.

Referrals from any agency, carers or self-referrals toeach of the four Community Mental Health Servicesfor Older People Teams can be made in writing or bytelephone and an initial response will be made within5 working days (non-urgent), or 72 hours (urgent).

For an emergency ‘Out of Hours’ Social Workertelephone: 029 2044 8360

COMMUNITY EMI (NURSING)TEAM—MENTAL HEALTHSERVICES FOR OLDER PEOPLE —WESTERN VALE OFGLAMORGAN

3rd .Floor, Brackla House, Brackla Street, BridgendCF31 4SZTelephone: 01656 645678

Two nurses (one full-time, the other part-time) arebased in Bridgend and the Community EMI Teamprovides care to those people over the age of 65years, with a diagnosis of a mental healthproblem/dementia. The service is provided Mondayto Friday 9.00am–5.00pm. Referrals can be madefrom Consultant Psychiatrists and GeneralPractitioners although other statutory and voluntaryagencies are able to access for advice. Carersshould make enquiries through the GP.

CONSULTANTS IN OLD AGEPSYCHIATRY

Cardiff South & East - Dr. Rhiannon Callaghan &Dr Marion GraySt. David’s Hospital, Cowbridge Road East, Cardiff,CF11 9BXContact: Medical Secretary, Dolha McLoughlin Telephone: 029 2053 6880Fax: 029 2053 6882Covers Grangetown, Butetown, Riverside, Canton,Llanrumney, Trowbridge, Rumney, Splott,Adamsdown, Cathays, Plasnewydd, Tremorfa

Cardiff West - Dr. Martin AndrewWhitchurch Hospital, Park Road, Cardiff CF14 7XBContact: Medical Secretary, Helen DaviesTelephone: 029 2033 6479Fax: 029 2062 1023Covers Tongwynlais, Whitchurch, Rhiwbina, Llandaff,Llandaff North, Gabalfa, Fairwater, Radyr & St.Fagans, Ely, Caerau (Creigau & Pentyrch - LocalAuthority only, Nantgarw & Taff’s Well - Health only)

Cardiff North - Dr. Angela OwenWhitchurch Hospital, Park Road, Cardiff CF14 7XBContact: Medical Secretary - Yvonne GordonTelephone: 029 2033 6477Fax: 029 2062 1023Covers Lisvane, Llanederyn, St. Mellons, Llanishen,Heath, Cyncoed, Roath (excluding Plasnewydd),Pentwyn, Rhiwbina

Vale of Glamorgan - Dr Ceri EvansBarry Hospital, Colcott Road, Barry CF62 8YHContact: Medical Secretary - Marilyn RobertsTelephone: 01446 704110Fax: 01446 704038Covers Penarth, Barry, Rural Vale to River Thaw



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Consultants continued...

Liaison Old Age Psychiatry – Dr Giselle MartinezMonmouth House, University Hospital of Wales,Cardiff CF14 4XWContact: Medical Secretary, Emma WilliamsTelephone: 029 2074 2093 Fax: 029 2074 2105Covers UHW, Llandough Hospital and CommunityGeneral Hospitals

Clinical Director – Dr Simon O’DonovanDirectorate Manager – Ian WileSenior Nurse Manager – Tim GooseyLlewelyn Suite, Whitchurch Hospital, Park Road,Whitchurch, Cardiff CF14 7XBTelephone: 029 2033 6347

Consultants in Old Age Psychiatry are senior doctorsspecialising in the diagnosis, treatment and care ofolder people with mental health problems. EachConsultant is part of a specialist team representing(usually) the professions of Psychiatric Nursing,Psychology, Physiotherapy and OccupationalTherapy.

In Cardiff and the Eastern Vale of Glamorgan Healthand Social Services work more closely together thanin other areas, and so health care professionals workalongside Social Workers in Community MentalHealth Teams (see entry). Other professionals, suchas Speech and Language Therapists and Dieticianscan also be called upon when needed.

Consultants in Old Age Psychiatry, work with peoplein hospital, residential or nursing homes, and peoplewho are still living in their own homes. They areresponsible for arranging admissions to DayHospitals (see entry) and Mental Health Services for Older People In-patient Services (see entry).

It is often possible to discuss referrals with one ormore members of the multi-professional team, andMedical Secretaries will be able to advise on this.Referrals often come from GPs or other MedicalDoctors, for example a Neurologist or Adult MentalHealth Psychiatrist, but referrals from any source willbe considered.

Following a referral for a psychiatric opinion, anappointment will be made to see the older person inan ‘Out-patient Clinic’ or, if the person is refusing toaccept they have problems or is too ill to attend, viaa ‘Domiciliary Visit’ to the person’s own home.

Consultants in Old Age Psychiatry also becomeinvolved in cases of urgent referral where emergencyadmission to hospital is required. They sometimeshave to use the powers of the Mental Health Act,

2007 to forcibly admit someone to hospital if theyhave very severe mental health problems and are atrisk or causing a risk to others. However, familymembers are always kept informed of decisionswhich have been made and actions which have beenneeded to be taken, and wherever possible they aredirectly involved in making those decisions.

CONTINENCE ADVICE (CARDIFF & VALE)

Cardiff & Vale Continence Service, CommunityDirectorate, Lansdowne Hospital, Sanatorium Road, Canton, Cardiff, CF11 8PL Telephone: 029 2093 2647

Urinary and faecal continence problems arefrequently associated with psychiatric illness in olderpeople. In many cases this is not inevitable and inevery case a thorough investigation of the reasonsfor incontinence should take place and anappropriate and workable plan for management ofthe condition should be applied. GPs and DistrictNurses can help, as can the CommunityPsychiatric Nurses. More specialised services arealso accessible for advice and further clinicalassessment, investigation and treatment throughoutCardiff and Vale.

The advisory service is for the promotion ofcontinence and the management of incontinence.Information will be sent to anyone on request andtelephone enquiries are accepted.

COUNSELLINGCounselling can offer emotional and psychologicalsupport to those feeling unable to cope with eventsin their lives. Many relatives and carers of olderpeople with mental health needs can benefit fromappropriate counselling, both during their period ofcaring and when it is over.

Several organisations provide counselling as part oftheir services—see entries for:

Age Concern

Applied Psychologists

Community MHSOP Teams

Consultant Psychiatrists


Crossroads Cardiff & Vale

Crossroads in the Vale of Glamorgan

Cruse Bereavement Care

Memory Team

Red Sea House

Solace

CROSSROADS CARDIFF & VALE

Contact : Claire Wood – Scheme ManagerUnit 5, 9–15 Norbury House, Norbury Road,Fairwater, Cardiff CF5 3ASTelephone: 029 2057 7300Email: [email protected]

Cardiff and Vale Crossroads provides ‘Carers’ ofpersons enduring mental ill health with essentialrespite breaks from their caring role, whilst aprofessional support worker supports the cared forperson. Crossroads ‘Lean on Me’ Mental HealthProject offers support to the person enduring mentalhealth issues by introducing them to additionalhealth, social care and well being activities which arechosen by the individual, maximizing theirindependance. All referrals must have a “CarersAssessment” from their local Community MentalHealth Team in order to access the “RespiteService”. The Community Mental Health Team willliaise with Crossroads regarding services required.

CROSSROADS IN THE VALE (EMI) LIMITED

West House, Stanwell Road, Penarth CF64 2YGContact: Scheme Manager - Fiona GuthrieTelephone: 029 2070 0057Email: [email protected]: [email protected]

Crossroads provides support to the family Carers ofthose whose loved ones have developed a late on-set mental illness such as dementia ordepression. Trained Care Workers provide individualcare at home, covering all aspects of care that wouldnormally be undertaken by the family Carer. Theorganisation is willing to discuss referrals andrequests for help from all sources. Particularlyhelpful is the support available at the time of

diagnosis when a Carer often feels particularlystressed and confused about the future.

In addition to the specialist domiciliary service,Crossroads in the Vale provides;

For the Carer’s loved one:Specialist Day Care:

• Bryneithin Day Centre in Dinas Powys. 7 days per week.

• Gardenhurst Resource Centre in Penarth. 1 day per week.

Luncheon Clubs (for ladies & gentlemen):

• Penarth twice per week

• Barry once per week

Afternoon clubs (for ladies & gentlemen):

• Penarth once per week

• Barry once per week

Men's Social Groups:

• Mainly Penarth and Barry once a week

For Carers and their loved ones:Social groups in Penarth, Barry and Western Vale:

• each once per month

For the Carers only:Carers' Support Group in Barry

• once a month

CAMEO (Come And Meet Each Other) Group:Time-limited Group for Carers whose caring role has ceased

• once a month

Counselling: Individual counselling for Carers isavailable throughout the Vale.

There may be a charge for the domiciliary care andDay Centres, however everything else is providedfree of charge at the moment.

CRUSE BEREAVEMENT CARE(CARDIFF AND THE VALE OFGLAMORGAN)

Telephone: 029 2022 6166

Support for bereaved people of all ages offering one-to-one counselling and bereavement support.




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Cruse Bereavement Care continued...

Bereavement and friendship groups. Gateway Centre(every Tuesday morning) and a counselling helpline.Open Monday, Wednesday and Friday mornings from10.00am-12.00 midday. Answerphone at other times.

DAY HOSPITALS - MENTALHEALTH SERVICES FOR OLDERPEOPLE—CARDIFF AND EASTERNVALE OF GLAMORGAN

Cardiff South – Turnbull Day HospitalSt. David’s Hospital, Cowbridge Road East, CardiffCF11 9BXTelephone: 029 2053 6854

Cardiff North & West – Hafan Day HospitalWhitchurch Hospital, Park Road, Whitchurch, CardiffCF14 7XBTelephone: 029 2033 6533

Vale of Glamorgan – Morfa Day UnitBarry Hospital, Colcott Road, Barry CF62 8YHTelephone: 01446 704099There are three Day Hospitals in Cardiff and theEastern Vale of Glamorgan especially for olderpeople with mental health problems, staffed byspecialist psychiatric nurses and therapists. Eachprovides an assessment and diagnostic function forpatients referred for an assessment of their mentalhealth (usually short-term attendance only isrequired) and therapeutic intervention and socialstimulation for patients attending regularly (one orseveral times a week) to provide a ‘Respite HealthBreak’ for those who usually care for them.

Each Day Hospital is open 5 days a week (Monday to Friday) and provides ambulance transport to andfrom the patient’s home. Attendance at Day Hospitalis usually arranged by the Case Manager/Care Co-ordinator (see Community Mental Health ServicesTeams entry) in conjunction with the Consultant inOld Age Psychiatry (see entry).

DAY HOSPITALS - MENTALHEALTH SERVICES FOR OLDERPEOPLE—WESTERN VALE OFGLAMORGAN

Contact: Ward 12, Glanrhyd Hospital, Bridgend CF31 4LNTel: 01656 753862 Assessment and Continuing Care is available forthose elderly clients diagnosed with an organicillness such as dementia. Respite Care / Day Placesare provided on Ward 12, Glanrhyd Hospital,Bridgend. Places are limited. Referral is via theConsultant Psychiatrist or Community PsychiatricNurse.

DENTAL SERVICE—COMMUNITYThe Community Dental Service provides a service atcommunity clinics and a domiciliary service for olderpeople or people with disabilities who have difficultyobtaining dental care. Referrals are accepted from allhealth care professions and from service users ortheir carers. For further advice on the CommunityDental Service, or to make a referral, contact:

Riverside Health Centre, Wellington Street, Canton,Cardiff CF11 9SHTelephone: 029 2064 0384 Monday to Friday 9.00am to 12.30pm and 1.30pm to 4.30pm.

DENTAL SERVICES—HOSPITAL Cardiff has the benefits of the only Dental TeachingHospital in Wales. In addition to specialist dentalservices, the Examination and EmergencyDepartment provides a service for urgent oral anddental problems and pain relief.

The PERIPHERAL HOSPITALS DENTAL SERVICE,based in the University Dental Hospital NHS Trust,provides an emergency dental service to in-patientsand routine dental care for patients in rehabilitationand continuing care. The service also providesadvice and sometimes treatment for Day Therapies.The service liases with the Community Dental Serviceto ensure access to dental services in thecommunity. The service also provides training in oralhealth care for a range of health professionals andcarers.


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For further information or advice, contact: UniversityDental Hospital NHS Trust Heath Park, Cardiff, CF14 4XW Telephone: 029 2074 7747

DEPARTMENT OF NUTRITION AND DIETETICSDepartment of Nutrition and Dietetics, Whitchurch Hospital, Park Road, Whitchurch, Cardiff, CF14 7XBTelephone: 029 2033 6576

The role of the dietician is to help assess thenutritional status of individuals and formulate anutritional care plan to help address any underlyingnutritional deficiencies and improve physical status.This is usually undertaken in conjunction with othermembers of the multidisciplinary team.

The aim of nutritional therapy is to help supportindividuals in achieving a good nutritional statusthrough making positive food choices therebyreducing the risk of nutrition-related complications.Dieticians also play an integral role in the managementof individuals suffering with swallowing difficulties.

If you are interested in learning more about ourservices please contact a member of the team on thecontact number above.

EMERGENCY SOCIAL WORK TEAM(Cardiff and Vale of Glamorgan)

Emergency telephone number: 029 2044 8360

There is a Social Worker on duty to coveremergencies which may occur out of office hours.This line is open from 5.00pm to 8.30am, Monday toThursday and from 4.30 pm Friday to 8.30 pmMonday.

EQUIPMENTEquipment to aid caring at home such ascommodes, walking frames etc may be obtainedthrough contacting the Community Mental HealthTeam (see entry).

GENERAL PRACTITIONERS The family doctor or GP is the person who usuallyarranges for a person to see a specialist ConsultantOld Age Psychiatrist or be referred to a CommunityMental Health Team for Older People. GPs will onlydo this if they are reasonably sure that the person issuffering from a psychiatric condition and, becauseearly symptoms can vary so much, it is often difficultto be certain of this. It is therefore very important togive the GP an accurate account of exactly whatsymptoms or behaviour patterns are causingproblems and to what extent and how often theyoccur. Some conditions can develop and then clearup with simple medication and the GP will try toeliminate these possibilities first.

However, if the symptoms or behaviour continue, orbecome worse, then further contact with the GP anda referral to specialist services is needed.

Referrals for Psychological and Counselling Servicesmay be made as an alternative to the prescription ofmedicines.

A small minority of GPs may sometimes appear to bereluctant to refer older people with memory problems,confusion, depression or anxiety to specialist MentalHealth services. If this is the case, and the carer isconcerned, a 'self-referral' can be made to severalorganisations, including the Cardiff Memory Teamand Community Mental Health Team for Older People(see entries) who specialise in the assessment anddiagnosis of mental health problems in old age.

Note: GP surgeries are closed on Saturday’s andSunday’s. If you need to contact a GP on a Saturday,Sunday or out of normal working hours you will needto call the ‘Out Of Hours Service’. To do thistelephone your GP surgery as normal and a recordedmessage will give you the Out Of Hours telephonenumber to ring.

HOLIDAYS—GLAMORGANHOLIDAY HOTEL

The Square, Porthcawl, Mid Glamorgan, CF36 3BW Contact: Mrs P Lloyd, Manager Telephone: 01656 785375

Situated on the sea front near Porthcawl shoppingcentre with panoramic views of the Bristol Channeland the hills of Mid Glamorgan, the GlamorganHoliday Hotel combines all the amenities of a firstclass hotel with the care needed to accommodate



I

people with care needs, carers and older personswho just require a break.

The Hotel, which is registered with the Care andSocial Service Inspectorate for Wales, can now offerthose people who wish to book an IndependentHoliday the choice of family suites, twin bedded orsingle accommodation. It offers an excellentstandard of accommodation designed to cater forelderly and disabled people who are in need of aholiday but who because of age, infirmity ordisability, are in need of the facilities of the Hotel,which is ideally suited for those who need the use ofa wheelchair. A varied and interesting range ofentertainment, indoor sports, bus trips and othersocial events are provided.

The carer can make private arrangements to pay forthe holiday with the Glamorgan Holiday Hoteldirectly, or, according to the Local Authority coveringyour area, a subsidy for the holiday may be given bythe Local Authority or a means-tested contributionmay be made on the basis of a Community CareAssessment.

HOMECARE SERVICESThere are a large number of Private Domiciliary HomeCare Agencies that provide Home Care services andhave been accredited by the Social ServicesDepartments. The Social Services Departments alsohave their own Home Care Services which areusually used for more specialist tasks or service usergroups. Following an assessment of all risks toindependent living, a financial assessment will bedone to determine whether the service user meetsthe critieria for a fully funded service by socialservices, has to pay a contribution to the costs orhas to pay the full cost themselves. There is a list ofall the agencies accredited by social services toprovide home care in your area. For a current listeither speak to your Social Worker or contact yourSocial Services Department for a free copy of 'TheCare Directory'.

For the City of Cardiff contact: Telephone: 029 2087 2087

For the Vale of Glamorgan contact: Telephone: 029 2071 1555

Charges for these services vary according to theLocal Authority covering your area. However,following a 'Financial Assessment' as part of a'Community Care Assessment', a means-testedcontribution towards the cost of care is usually made

by the Local Authority (unless the service user hassufficient finances). (See Section 5: Financial Aspectsof Caring).

HOSPITAL DISCHARGE SERVICE—AGE CONCERNTy^ John Pathy, 13-14 Neptune Court, Vanguard Way,Cardiff, CF24 5PJTelephone: 029 2043 6699

The Hospital Discharge Service provides short-term intensive support to older people in theirown homes following discharge from hospital. Theservice operates over a 7 day period. Practical andemotional support is offered by trained supportworkers, who also provide a liaison service withstatutory, private and voluntary organisations.

IN-PATIENT SERVICES - MENTALHEALTH SERVICES FOR OLDERPEOPLE—CARDIFF AND EASTERNVALE OF GLAMORGAN

In-patient Services for Older People with MentalHealth Problems are to be found on three hospitalsites in Cardiff and the Eastern Vale of Glamorgan -Whitchurch Hospital, St. David’s Hospital and BarryHospital.

Three wards: Owain Glyndwr (East 5) in WhitchurchHospital, Morfydd (West 1) in Whitchurch Hospitaland St. Barruc’s Unit in Barry Hospital, provideassessment and treatment for people with dementiaor suspected dementia. These wards usually provideshort-stay care until the person’s condition hasstabilised and the assessment of their condition hasbeen completed and decisions about the bestplacement for their future care have been made inconjunction with their carer and family.

Two wards: Caradog (West 4) in Whitchurch Hospitaland Morgannwg Unit in Barry Hospital, provideassessment and treatment for people with a severelate onset mental illness. These wards provide short-stay care until the person’s condition has stabilisedand they can be discharged home with follow-upsupport from a Community PsychiatricNurse/Psychologist/Other Specialist.

The Iorwerth Jones Centre, Llanishen, and St.Barruc’s Unit in Barry Hospital, provide continuing

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care assessment and inpatient services for people(who meet Continuing Health Care criteria) withmoderate to severe dementia and behavioural orother management problems requiring specialistpsychiatric nursing care.

The Hamadryad and Glan Ely wards in St. David’sHospital provide continuing care assessment andinpatient services for people (who meet ContinuingHealth Care criteria) with moderate to severedementia whose presentation is frail.

Cardiff and the Vale of Glamorgan Local HealthBoards have produced ‘NHS Continuing CareCriteria’ for admission to NHS continuing care bedsand these are applied locally, with placement decisionsbeing made in ‘Ward Round/Case Conferences’ or‘Family Meetings’. Carers and family members arealways involved in decision making about the best caresetting to manage their relative’s needs.

Often it is decided that a Private Nursing orResidential Home would be the best placement forthe person, and if this is the case then great care willbe taken to ensure the home can deal with olderpeople who have dementia/late life mental illness andfinancial assistance will be given from SocialServices if the person’s means fall below a certainlevel (above £21,000 savings the person meets thefull cost; £14,750-£21,000 the person makes ameans-tested contribution to costs; below £14,750savings Social Services meets the full costs*). TheCase Manager/Care Co-ordinator will always beavailable to support the patient and carer in decisionmaking and assess the person’s financial assetsusing an agreed formula. For more information onfinances see the Financial Aspects of Care section.*amounts correct at time of printing

Cardiff South – St. David’s Hospital (Respite Health Care and Continuing Assessment Care)Cowbridge Road East, Cardiff CF11 9BXTelephone: 029 2053 6666

Cardiff North & West - Whitchurch Hospital(Dementia Assessment, Assessment and Treatmentfor Serious Mental Illness, Respite Health Care, andContinuing Assessment Care)Whitchurch Hospital, Park Road, Whitchurch, CardiffCF14 7XBTelephone: 029 2069 3191

Eastern Vale of Glamorgan – Barry Hospital(Dementia Assessment, Assessment and Treatmentfor Serious Mental Illness, Respite Health Care, andContinuing Assessment Care)Colcott Road, Barry CF62 8YHTelephone: 01633 704 000

IN-PATIENT SERVICES—MENTALHEALTH SERVICES FOR OLDERPEOPLE—WESTERN VALE OFGLAMORGAN

Ward 15 Coity Clinic Princess of Wales Hospital,Coity Road, Bridgend, CF31 1RQTelephone: [Ward 15] 01656 752250 (ext 2250)

Inpatient services are provided at the Coity Clinic,Princess of Wales Hospital, on Ward 15, which haseighteen beds. All beds are outlined for use byelderly clients with an organic illness such asdementia. Referrals to the unit can be made byConsultant Psychiatrist, GPs, Accident andEmergency Department, medical wards, CommunityMental Health Teams, or self/carers.

INVOLVEMENTMost organisations encourage and directly look forCarers and Service Users’ experience andknowledge in the services they are developing oroffering. Listed below are some specificorganisations that do this, if you are interested inparticipating in this important area please contactthem directly.

See entries for:

(Cardiff & Vale) Mental Health Development Project

Carers Centre

Carers Wales

MIND

JOURNEYS“Towards recovery fromDepression”

120-122 Broadway, Roath, Cardiff CF24 1NJContact: Helen RobinsonTelephone: 029 2069 2891Email: [email protected]

Journeys work to relieve and prevent depression, atreatable condition, by providing information andunderstanding to those who are affected by it.




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Journeys continued...

They also campaign to raise awareness amongst thegeneral public about the realities of depression.

They offer publications to the general public whichgive advice and information on depression andrelated topics. They have support groups throughoutWales (details are available [email protected]).

For our members we offer additional services, e.g.pen-friend scheme and an internet group. No referralis necessary to access either membership or the self-help groups

MANIC DEPRESSION FELLOWSHIP(MDF) - The Bi-Polar OrganisationCymru

22-29 Mill Street, Newport South Wales, NP20 5HAHelpline: 08456 340 080 E-mail: [email protected]

MDF enables people affected by bipolar to takecontrol of their lives. Educates the public and caringprofessions about bipolar disorder and mental healthissues. Encourages and assists research into bettermethods of treatment. Challenges the stigma,misinformation and ignorance surrounding mentalillness.

Promotes effective self-management techniques ofdepression and mania. MDF offers a membership.Referrals are open to anybody.

Services include:

• Quarterly magazine - ‘Pendulum’.

• Regular Wales newsletter - ‘Pendil’.

• Training, talks and presentations.

• Books and specialist publications.

• Self Management Training Courses.

• 24 Hour Legal Advice Line (Employment, law, statebenefits, debt).

• 24 Hour Support Line

• Travel Insurance & Life Assurance Schemes.

• Self help groups (MDF BiPolar Self-Help Groups are a network of groups throughout Wales, which subscribe to the general principles of the MDF the BiPolar Organisation).

We also offer Spectrum Training. All of our presenters

have Bipolar Disorder and relate their experiences toemployers and employees of organisations.

MEMORY TEAM

Academic Centre, Llandough Hospital, Penarth CF64 2XXContact: Team Secretary, Janet MorseTelephone: 029 2071 6961Fax: 029 2070 4244E-mail: [email protected]

Cardiff Memory Team consists of:

• Dr. Tony Bayer, Dr. Rachel Brewer, Dr Sugandha Kumar (Medical Doctors).

• Dr. Jennie Powell, Speech and Language Therapist.

• Judith Ryan, Clinical Nurse Specialist.

• Jayne Davies Ellis and Nick Speller Specialist Liaison Nurses.

• Olga Below, Natalie Smith (Nursing Assistants).

• Dr Rosslyn Offord, Clinical Psychologist.

• James Feeney, Tara Seed (Psychology Assistants).

Cardiff Memory Team is a multi-professional teamthat specialises in the identification, assessment andmanagement of people with memory problems,dementia and related conditions. They will arrangefor a person with memory problems or othercognitive problems to have a full medical andpsychological assessment in order to arrive at adiagnosis. Once this has been achieved appropriatecare, treatment and support for both the person andfamily/carers are planned, including regular clinicfollow-up. Referrals often come from GPs, but theteam is always ready to discuss situations withSocial Workers or carers. Self referrals are alsoaccepted with the GPs agreement.

Cardiff Memory Team also runs educative/informativePatient/Carer groups. These are ‘Closed Groups’, i.e.for selected groups of newly identified anddiagnosed patients and/or carers, which usually meetonce a week for up to 6-8 sessions. Group meetingsprovide an educational/informational element, as wellas providing emotional support and an opportunity tomeet others in similar circumstances. The venue forthese meetings varies according to the needs ofparticipants.


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MENTAL HEALTH DEVELOPMENTPROJECT (Cardiff and the Vale)

Unit 11, Williams Court, Trade Street, Cardiff CF10 5DQTelephone: 029 2022 2000www.cvmhdp.org.uk

The work of Cardiff & Vale Mental HealthDevelopment Project includes support to thevoluntary sector, service user and carer groups inrelation to training and development, informationsharing, co-ordination of joint working andinvolvement in planning and provision of mentalhealth services.

Carer & Service User Involvement in OlderPeople’s Mental Health Services:

Carers and Service Users views are important in thedevelopment and delivery of all mental healthservices in the Cardiff and Vale of Glamorgan area. Ifyou would like further information on becominginvolved (see Involvement Section) or the work of theProject, please contact:

Jane Patreane, Development Worker (Cardiff) or Matthew Salisbury, Development Worker (Vale ofGlamorgan)Telephone: 029 2022 2000 Email: [email protected]

MIND

Cardiff Mind 166 Newport Road, Cardiff CF24 1DLTelephone: 029 2040 2040E-mail: [email protected]

Mind in the Vale of Glamorgan29 Ty Newydd Road, Barry, Vale of Glamorgan CF62 8HBTelephone: 01446 730792E-mail: [email protected]

Mind’s vision is of a society that promotes andprotects good mental health for all, and that treatspeople with experience of mental distress fairly,positively, and with respect. The needs andexperiences of people with mental distress driveMind’s work and they make sure their voice is heardby those who influence change. Mind’sindependence gives them the freedom to stand up

and speak out on the real issues that affect dailylives. They provide information and support,campaign to improve policy and attitudes anddevelop local services. They do all this to make itpossible for people who experience mental distressto live full lives, and play their full part in society.

Cardiff Mind offers a variety of services including:A range of community based services for people withmental health problems. The services currentlyprovided include supported accommodation, tenantsupport in their own homes, day services includingcounselling, personal planning, alternative therapies,women only and men only groups together with avariety of mixed groups and social events.Information and signposting also provided.

Mind in the Vale offers a variety of services and runsfour projects. Contact their office for moreinformation on the following:

• Doves Centre (Mental Health Resource Centre), Penarth.

• Rainbow Project (Mental Health Resource Centre with outreach sessions and groups) West (rural) Vale.

• Travellers in Mind (café and catering based work experience project and art gallery).

• Skillshare Project (matching vocational and artistic skills to community needs).

OLDER PEOPLES’ LIAISONPSYCHIATRY TEAM

Older people who are admitted to general hospitalwith physical health problems may also be sufferingfrom depression, delirium and/or dementia. It hasbeen estimated that between 10-20% of olderpeople admitted to medical wards suffer withdelirium (acute/sudden onset confusion), 53% withdepression and 35% with dementia. Evidencesuggests that the mental health needs of olderpeople are often poorly recognised, managed andtreated within the general hospital setting, and to thisend the Mental Health Services for Older PeopleDirectorate of Cardiff and Vale NHS Trust is workingto develop a Mental Health Hospital Liaison Team(Older People).

At present the team consists of a Locum Consultantin Old Age Liaison Psychiatry, two Specialist LiaisonNurses, and a Medical Secretary/ Administrator. Theteam can undertake mental health assessments,



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Liaison Psychiatry Team continued...

advise on care management, recommend treatmentand advise on appropriate placements. They can alsofacilitate transfers of people with severe mentalhealth problems to acute assessment wards, oncetheir physical health has improved and their conditionis stable.

The Consultant in Old Age Liaison Psychiatry can becontacted via secretary on 02920 336022

Specialist Liaison Nurses can be contacted directlyon 02920 336198

Or via Julie Harrison on 07966 059276 Team Fax 029 2033 6473

PRT CARERS’ CENTRE (Cardiff and the Vale)

Victoria House, 250 Cowbridge Road East, Cardiff CF5 1GZContact: Sue Hutton, Chief ExecutiveTelephone: 029 2022 1439 Email: [email protected]

The Carers’ Centre exists to provide information,support, advice and advocacy for the carers of allclient groups, including those with mental healthproblems of any age. A Helpline is also available -Telephone: 029 2022 1421, open Monday to Friday10.00 a.m. to 4.00 p.m. Carers can also drop-in tothe Centre during these times. Languages spoken:English, Urdu, Bengali, Punjabi, Hindi, Sylhety &Somali. Loop system available.

PARKINSON'S DISEASE SOCIETY

There is a Cardiff Branch of the Parkinson's DiseaseSociety (see National Organisations). Meetings areheld at the United Reform Church/Communal Hall,Llangranog Road (off Templeton Avenue), Llanishen,Cardiff, on the second Tuesday of the month at7:30pm. Home visits can also be arranged forinformation and advice.

For more information and meeting times contact: Telephone: 0844 2253784

PRACTICE DEVELOPMENT UNIT(MENTAL HEALTH SERVICES FOROLDER PEOPLE)

Whitchurch Hospital, Park Road, Whitchurch, CardiffCF14 7XB Contact: Administrator, Glyn ScottTel: 029 2033 6073 Fax: 029 2033 6385 E-mail: [email protected]

Members: Dr. Christina Maciejewski, Team Leader & Consultant Clinical Psychologist, Janet LynnMorgan, Clinical Governance Support Nurse, ElaineNewman (Project Manager, New Build Projects), andGlyn Scott, PA.

The Practice Development Unit (MHSOP) is managedby Cardiff and Vale NHS Trust. The team exists tosupport and develop high quality services for peoplewith dementia, older people with severe late lifemental health problems and the carers of these clientgroups. They are involved in service evaluation,strategic planning, research and development,specialist training and consultancy and produce a tri-annual specialist journal, entitled 'Signpost to OlderPeople and Mental Health Matters' (see websitewww.signpostjournal.org.uk). (Subscriptions priced at£15 for carers).

The team acts as a resource and information centrefor staff and carers by providing a specialist journal,book library and therapeutic materials library, whichcan be used free of charge. Good links also existwith the national network of Dementia ServicesDevelopment Centres, and the Practice DevelopmentUnit (MHSOP) in Cardiff acts as the South Wales partof DSDC Wales. The DSDC Wales is located atBangor University.

Specialist training courses are also organised by theUnit, including FOCUS—Fundamentals of Care andUs—7 day certificated learning course (£175). Formore information about the Practice DevelopmentUnit and their training courses, or to receive a freesample copy of the Signpost journal, please call theabove number.


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RED SEA HOUSE

Taff Housing Association LtdAlexandra House, 307-315, Cowbridge Rd East,Cardiff, South Glamorgan CF5 1JDTelephone: 029 2025 9100 Telephone Abdi Sugulle: 029 2048 0078

Red Sea House provides help and support in variousways to anyone over 50 with a Black and MinorityEthnic background (male/female). They also providesheltered accommodation and support through theTaff Housing Association.

RESIDENTIAL AND NURSINGHOMESThere may come a time when the carers of an elderlyperson who has mental health needs agree that aplace in a care home will be in the best interests ofthe person needing the care. Such decisions areoften difficult but are usually arrived at afterconsultation between the professionals involved, theservice user where possible and the service user’sfamily and/or carers. Family members who are carersoften find this an anxious time as they strive to act intheir relative's best interests, whilst starting with verylittle information on Homes that can cater for theirrelative's needs.

General advice in the form of a booklet is publishedby the Social Services Department ‘The CareDirectory’, which lists all the Private Residential andNursing Homes in the area, can be obtained fromyour Social Services Department.

For the City of Cardiff contact: Telephone: 029 2087 2087 or visitwww.cardiff.gov.uk/c2c (navigation required)

For the Vale of Glamorgan contact: Telephone: 029 2071 3770

The payment of fees for care home placements maybe the responsibility of Social Services, the LocalHealth Board or the Service User. Two kinds ofassessment are conducted, first there is anassessment of the service user’s needs andsecondly, a financial assessment to determinewhether the service user is entitled to have their carefully funded by the Local Health Board, partly fundedby Social Services or fully funded by the service userthemselves (see 'Financial Aspects of Caring'chapter).

The Alzheimer's Society has produced a useful set ofGuidelines on 'What To Look For In A Home'. Theyare as follows:

1. Does the Head of the Home understand the problems of people with Alzheimer's?

2. Is the building homely and welcoming, secure and safe, with plenty of space for residents to wander?

3. Can you get there easily?

4. Is there provision for introductory visits and short stays?

5. Can all residents have their own rooms, personal clothing and possessions, including furniture and photographs?

6. Are there activities provided?

7. Is the food palatable and tailored to individual needs?

8. Are some of the staff trained nurses and are enough staff available in relation to the number ofpatients?

9. Is there regular input from other professionals, including occupational therapists, chiropodists, hairdressers etc.?

10. Will the person be able to stay permanently in thehome even if ill/confused?

('What to look for in Residential Care', Alzheimer'sSociety. Available from the national organisation—seeentry).

Age Concern through their Advocacy Service (seeAge Concern entry) have Placement Advisors whocan help in area. This may include enablingindividuals to write letters or make phone callsand/or representing their wishes or negotiating withan outside agency.

Additionally you can ask to see reports on quality ofcare provided in various Homes by telephoning theCSSIW (Care & Social Services Inspectorate forWales)—see entry.

RESPITE CARE Respite Care is the name given to the help providedin order to give a short or longer term break to thecarers/relatives of older people with mental healthneeds in the community. Following an assessment,this can range from a sitting service for a few hoursin a person’s own home or in a care home placementfor a week or longer.



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Respite Care continued...

This can be provided within a Residential NursingHome, or within a specialist Older People’s MentalHealth Hospital ward if the service user meet theContinuing Health Care criteria.

Access to Respite Care is usually negotiated with a'Case Manager/Care Co-ordinator'—see CommunityMental Health Teams for Older People, and afinancial assessment may be necessary if theplacement is within a Residential or Nursing Home(though private arrangements for Respite Care cansometimes be made).

SOLACE—CARDIFF & VALE NHS TRUST

1 Park Road, Whitchurch, Cardiff CF14 7BPContact: Carer's Support WorkerCarers Support Nurse/Solace Manager Janice Becquer-MorenoTelephone: 029 2052 9848 (helpline)

029 2052 9832 (office)

Solace exists to support people whose lives have insome way been affected through providing care for arelative or friend with memory problems, diagnosis ofa dementia, depression or any other mental illness.Solace has a charitable status although service isunder Mental Health services for Older People withinCardiff and Vale NHS Trust. The service is providedto those who live within the geographical area ofCardiff and the Vale of Glamorgan, although thesupport line can be accessed by any carer.

Solace provides carers with the following services:

Carer Support Groups (see entry in Section 3): Anumber of different carer groups are run from thehomely Solace base, for carers to either come ontheir own or with those they care for. Pleasetelephone Solace for dates and times of these groups.

One-to-one support: By appointment only, one toone support sessions can be arranged with the carersupport nurse by contacting Solace.

Confidential Telephone Support Line: The SupportLine is open from 9am until 5pm Monday to Fridaywith a call back service operating out of hours.Trained staff and volunteers man the support line togive emotional support and information to carers ofthose with mental health needs. All calls areconfidential and callers are able to remainanonymous.

Information and Signposting: Solace has access toa wealth of literature that is relevant for those in acaring capacity, as well as information about otherorganisations that may be helpful.

For more information on any of these services thenplease contact Solace on 029 2052 9832.

SPEECH, LANGUAGE ANDCOMMUNICATION Communication and swallowing difficulties are oftenexperienced by people with memory difficulties,dementia and related conditions. The importance ofadequately addressing these problems is increasinglybeing recognised. Speech and Language Therapistsare able to offer specialist assessment and giveadvice on management. Within Cardiff and the Valeof Glamorgan the Speech and Language Therapistswork within the Memory Team based at LlandoughHospital and also at Whitchurch Hospital, BarryHospital, St David’s Hospital and Iorwerth Jones.

For further information contact: Dr. Jennie Powell, Strategic and Consultative LeadSpeech & Language Therapist, Memory Team,Academic Centre, Llandough Hospital, Penarth,CF64 2XX Telephone: 029 2071 6975

THE STROKE ASSOCIATION

Unit 8, Greenmeadow Business Park, Cae Gwyrdd,Tongwynlais, Cardiff CF15 7AB Director for Wales: Wendy DaviesDeputy Director: Trish HughesTel: 029 2052 4400Email: [email protected]

The Stroke Association is the only national charitysolely concerned with helping everyone affected bystroke. Our vision is to have a world where there arefewer strokes and all those touched by stroke get thehelp they need. We provide local support services forthose affected by stroke. To find out more, pleasespeak to our Stroke Helpline.

For more information on what is available locally,publications or a listening ear please contact theStroke Helpline: Telephone: 0845 3033 100 Email: [email protected]


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VOLUNTARY EMERGENCYSERVICE TRANSPORT (VEST)

Unit 45, Portmanmoor Road Industrial Estate,CARDIFF CF24 5HB

VEST run a Dial-a-Bus service for people in Cardiffand the Vale of Glamorgan providing door-to-doortransport for people with restricted mobility forwhatever reason. Prices depend on where you wantto go to but all are at a very reasonable price.

For information and prices Telephone: 029 2049 0335 / 2049 0325www.vestcardiff.talktalk.net

YOUNGER PEOPLE WITHDEMENTIA (CARDIFF & THE VALE)

Younger People with Dementia (YPD) Project,Alzheimer’s Society, Oldwell Court, Ty Gwyn Road,Penylan, Cardiff, CF23 5OAContact: Karen CollinsTelephone: 029 2052 1872Email: [email protected]

It is estimated that there are about 18,500 youngerpeople (under 65yrs) with dementia in the UK andover 125 of these are living in Cardiff and the Vale ofGlamorgan.

Currently there are no specialist services locally,however the Alzheimer's Society (Cardiff and Valebranch) has a Development Officer Post working inthis area. The officer’s main aim is to work with otherorganisations and to jointly develop and improvesupport services offered to younger people withdementia throughout Cardiff and the Vale ofGlamorgan.

The Development Officer is able to provide specialistinformation and support to younger people withdementia and their families and can be accessed viathe details above. A support group has also beenestablished for carers of younger people withdementia (see Section 3).

USEFUL WEBSITESThese websites may be useful.

www.cardiff.gov.ukThe official website for Cardiff Council providing allthe information you may need and contact details.

www.valeofglamorgan.gov.ukThe official website for Vale of Glamorgan Councilproviding all the information you may need andcontact details.

www.cardiffandvale.wales.nhs.ukA comprehensive website providing information on services provided by the Cardiff and Vale ofGlamorgan NHS Trust. Cardiff and Vale NHS Trust isthe largest NHS Trust in Wales and one of the largestin the UK.It provides day to day health services to apopulation of around 500,000 people living in Cardiffand the Eastern Vale of Glamorgan.

www.abm.university-trust.wales.nhs.ukAbertawe Bro Morgannwg University Trust is on eofthe largest NHS Trusts in Wales, employing over16,000 staff and coversing a population of 600,000across Swansea, Neath Port Talbot, Bridgend andthe Western Vale of Glamorgan.


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National Services Directory

These are the main organisations which provide services relevant to older people withmental health needs and/or their carers in the UK. Their websites provide a lot moreinformation on who they are and what they can offer.

Section2:National Services Directory

ACTION ON ELDER ABUSEAstral House, 1268 London Road, London SW16 4ER Contact: Zee Asif, lnformation Resources Officer Telephone: 020 8765 7000 'Elder Abuse Response Line' ConfidentialTelephone Helpline: 0808 808 8141www.elderabuse.org.uk

As a multi-disciplinary membership organisationAction on Elder Abuse aim to prevent the abuse ofolder people by raising awareness; encouragingeducation; promoting research; and collecting anddisseminating information. They do this throughproviding up to date information for its members;running conferences on elder abuse and relatedissues; giving presentations to a wide range oforganisations; producing leaflets, resource materialsand reports for practitioners and the public; andacting as a resource for television, radio and thepress.

AGE CONCERN CYMRU AND HELPTHE AGED IN WALESTy John Pathy, 13/14 Neptune Court, Vanguard Way,Cardiff, CF24 5PJContact: Claire BottomleyTelephone: 029 2043 1555www.agecymru.org.uk

On 1 April 2009 Age Concern Cymru and Help theAged in Wales came together as a single charity

dedicated to improving the lives of all older peoplethroughout Wales and internationally.

In the past much of what we have done has been thesame or complementary, so by joining together andbuilding on our strengths we will avoid duplication,achieve scale and dispel the confusion that hassurrounded the two organisations. We believe thathaving combined our expertise, knowledge, skillsand resources we will now better achieve our sharedcommitment to create a better world for older people

Our goals are also evident in our strong policy andcampaigning commitments. Our groundbreakingelder abuse awareness project and our Just EqualTreatment campaign for age equality are fineexamples of this.

Together we value your continued support and as anew organisation we look forward to working withyou to achieve our vision of improving the lives of allolder people in Wales.

ALZHEIMER'S SOCIETYDevon House, 58 St Katharine’s Way, London E1W 1JXTelephone: 020 7423 3500National Helpline: 0845 300 0336, 08.30am- 6.30pm Monday to Fridaywww.alzheimers.org.uk

The Alzheimer's Society is the leading care andresearch charity for people with dementia and thosethat care for them.



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Alzheimer’s Society continued...

It is a national membership organisation and worksthrough nearly 300 branches and support groups.The Society has expertise in information andeducation for carers and professionals. It provideshelplines and support for carers, runs quality day andhome care services through its Care Consortium,funds medical and scientific research and givesfinancial help to families in need. It campaigns forimproved health and social services and greaterpublic understanding of all aspects of dementia.

In addition, the Society provides a comprehensiveset of Information and Advice Sheets (also availablefrom their website) which can be obtained free ofcharge upon membership.

Membership is open to everyone and there is nofixed subscription just please give as generously asyou can (for carers and people with dementia whoare unable to contribute financially, membership isfree). An excellent quarterly newsletter is alsodistributed to all members, with a very useful'Questions & Answers' page written for carers.

The Society offers a legal and welfare helpline whichprovides legal information to callers. They can alsoprovide callers with names and contact details ofsolicitors who specialise in the law as it relates toolder people.

ALZHEIMER’S SOCIETY – WALESOFFICEAlzheimer’s Society, 4th Floor, Baltic House, MountStuart Square, Cardiff CF10 5FHTelephone: 029 2048 0593

The Alzheimer’s Society Wales Office provides helpand support to people with Dementia, carers’ andprofessionals. They provide support to branchesacross Wales (see Local Services section), give talksand presentations to carers’ and professionals. Theyalso campaign to improve services. Advice andinformation leaflets are available and they can alsoprovide details about local branches and servicesacross Wales. English and Welsh speakers.

ARTHRITIS CARE 18 Stephenson Way, London NW1 2HD Telephone: 020 7380 6500Freephone Helpline Monday to Friday 10.00 – 4pm

on 0808 800 4050 Email: [email protected]

Arthritis Care is the UK’s largest voluntaryorganisation working with and for all people witharthritis. It provides information and support on arange of issues related to living with arthritis. ArthritisCare campaigns locally and nationally to make surepeople with arthritis have access to the treatmentsand services they deserve. Contact them as above.Arthritis Care also have a Welsh Office, please call01239 712 988 for information about services inWales.

ARTHRITIS RESEARCH CAMPAIGN(ARC) Copeman House, St Mary’s Court, St Mary’s Gate,Chesterfield, S41 7TD Telephone: 0870 850 5000www.arc.org.uk

The Arthritis Research Campaign founded in 1936,raises funds to promote medical research into thecause, treatment and cure of arthritic conditions: toeducate medical students, doctors and alliedhealthcare professionals about arthritis and toprovide information to people affected by arthritisand to the general public. More than seven millionpeople in the UK have long-term health problemsdue to arthritis or a related condition. Arthritis is thesecond most common cause of time off work amongboth men and women. It is the only major medicalresearch charity in the UK investigating arthritis in allits forms. Millions of pounds are provided every yearfor grants funding research, education and training.They spend approximately £1 million each year onproviding information about arthritis and relatedconditions, to members of the public and the medicalprofession. Information can be downloaded fromtheir website.

BLADDER AND BOWELFOUNDATION SATRA Innovation Park, Rockingham Road,Kettering, Northants, NN16 9JHNurse helpline: 0845 345 0165Counsellor helpline: 0870 770 3246General enquiries: 01536 533255 email: [email protected]


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www.bladderandbowelfoundation.org Registered Charity Number 1085095

The Bladder and Bowel Foundation is the UK charityfor people with bladder and bowel disorders.Officially formed in June 2008 and launched on 15September 2008, it replaces Incontact (formed in1989) and the Continence Foundation (closed May2008). B&BF is now the UK’s largest advocacycharity providing information and support for alltypes of bladder and bowel related problems,including incontinence, prostate problems,constipation and Diverticular Disease, for patients,their families, carers and healthcare professionals.

CARERS UK32-36 Loman Street, Southwark, London SE1 0EETelephone: 020 7922 8000www.carersuk.org

Carers UK is the only national association thatprovides a single voice for carers across clientgroups, including the carers of older people withmental health needs. Carers UK offers informationand support, either nationally through their carersadvisor and leaflets, or locally through local branchesand officers. They also mount general awarenesscampaigns highlighting and voicing the needs ofcarers nationally, as well as actively campaigning forgovernment and policy making bodies to improveservices and benefits for carers. (The 'CarersRecognition and Services Act 1996' largely cameabout through their campaigning).

Membership is available on a ‘pay as much as you can’basis (carers join for free if they are on a low income).

In addition, the Carers UK operates a national'CARERSLINE' (Telephone: 0808 808 7777), whichprovides information, advice and support on a rangeof issues, including legal, financial and welfare rights.Carersline is staffed on Wednesdays and Thursdaysfrom 10am–12noon and 2–4pm; at other times callerscan leave their details to receive an information pack.

Carers Wales information is available in LocalServices section.

CENTRE FOR POLICY ON AGEING 25-31 Ironmonger Row, London EC1V 3QP Telephone: 020 7553 6500www.cpa.org.uk

Centre for Policy on Ageing is an independent charitywhich aims to raise issues of public importance onmatters to do with ageing and old age, to promotedebate and influence policy in ways which further theinterests of older people, and to promote goodpractice in enabling older people to lead fulfilled andindependent lives.

The Centre has three departments: the Policy andResearch Department, the Library and InformationServices, and CPA Publishing, the publishing arm ofCPA.

Of particular use are CPA's reference library, a postaland telephone enquiry service and a range ofreference publications, including New Literature onOld Age, priced £30 for six issues a year.

THE CINNAMON TRUST 10 Market Square, Hayle, Cornwall TR27 4HE Telephone: 01736 757900 www.cinnamon.org.uk

The Cinnamon Trust is a national charity involved inthe provision of short-term care/fostering for pets ofelderly or terminally ill people who are ill at home orneeding to spend time in hospital. They can alsoarrange for a volunteer to undertake dog walking forolder people who cannot manage it.

CITIZENS ADVICEwww.citzensadvice.org.uk (for information on services etc.)www.adviceguide.org.uk (for on-line interactive advice)

The Citizens Advice service helps people resolvetheir legal, money and other problems by providingfree, independent and confidential advice, and byinfluencing policymakers. Every Citizens AdviceBureau is a registered charity reliant on trainedvolunteers and funds to provide these vital servicesfor local communities. Advice is available face-to-face and by telephone. Most bureaux offer homevisits and some also provide email advice. For yourlocal office details please see ‘Local Services’section.


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COUNSEL AND CARE FOR THEELDERLYLower Ground Floor, Twyman House, 16 BonnyStreet, London NW1 9PGTelephone: 020 7241 8555, Monday to Friday, 9:00am–5:00pm

Counsel and Care for the Elderly is a nationalcharitable organisation that offers a free informationand advice service about private and voluntaryhomes; fees; sheltered housing; and charitable helpfor elderly people and their carers. The organisationhas produced a series of fact-sheets that areavailable free of charge. They also answer enquiriesby letter from anywhere in the country.

They can also advise on ways to access money fromother charitable funds and provide information onwelfare rights.

CROSSROADS CARING FORCARERS10 Regent Place, Rugby, Warwickshire CV21 2PN Telephone: 0845 450 0350www.crossroads.org.uk

Crossroads Caring for Carers exists to provide homecare services to relieve carers and to enable disabledpeople to stay in the community. There are some 120schemes operating throughout England and Wales.Between them they provide 4.5 million hours of carea year to more than 37,000 families. All schemeshave been developed in conjunction with localvoluntary and statutory organisations. Schemessupport elderly people, disabled people, youngcarers, people with specific health conditions.

CROSSROADS WALES DIVISIONALOFFICE 3rd Floor, 49 Charles Street, Cardiff CF10 2GD Telephone: 029 2022 2282

Crossroads Wales, part of Crossroads Caring forCarers, provides help and support to the 24 schemesin Wales who provide services to carers. Servicesavailable include respite, where a trained CarerSupport Worker goes into the home to take over thecaring tasks, allowing the carer time for themselves.Crossroads in the Vale of Glamorgan (see entry in

Local Services) are exclusively Older People’s MentalHealth, but all Crossroads schemes offer services tothe carers of people with mental health needs.

CRUSE (BEREAVEMENT CARE) PO Box 800, Richmond, Surrey TW9 1RGTelephone helpline: 0844 477 9400 9:30am–5:00pm Monday to Fridaywww.cruse.org.uk

Cruse CymruTelephone: 029 2088 6913Email: [email protected]

Cruse is the national organisation for all bereavedpeople, including the widowed and their children.Cruse offers practical advice, support, counsellingand the opportunity to share experiences with otherswho have been bereaved. The personal help that isprovided is free and confidential and is backed up bya wide range of specialist publications.

Cruse also provides a website for bereaved childrenand young people—www.rd4u.co.uk—which isbacked up by a young people’s helpline:Telephone 0808 808 1677

DISABLED LIVING FOUNDATION 380-384 Harrow Road, London W9 2HU Telephone: 020 7289 6111Helpline: 0845 130 9177, 10:00am–4:00pm Monday to Fridaywww.dlf.org.uk

The Disabled Living Foundation is the nationalinformation service on disability equipment. Theyprovide health care professionals and the generalpublic with advice on over 18,000 products thatenable disabled people to increase theirindependence in activities of daily living.

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HUNTINGTON DISEASEASSOCIATIONCentral Information, Advice & Support ServiceNeurosupport Centre, Norton Street, Liverpool L3 8LRTel: 0151 298 3298 Fax: 0151 298 9440Email: [email protected]

The Huntington's Disease Association providesleaflets and fact sheets on various aspects ofHuntington's disease. The objective of theassociation is to provide care, advice, support andeducation to both families and professionals who arecaring for people affected by Huntington's disease.

The Association has a team of regional care adviserswho provide family support, develop awarenessthrough education and promote increased serviceprovision with the overall aim of improving people'squality of life.

MINDGranta House, 15-19 Broadway, Stratford, LondonEl5 4BQ Main switchboard: 020 8519 2122www.mind.org.uk

Mind is the leading mental health charity in the UKand they provide a wide range of services, includingsome which are appropriate for carers of people withdementia. For example, a number of publications areavailable, such as 'Understanding Dementia' and'Understanding Caring'. A number of advice andfactsheets are also available on similar themes. Youcan telephone the above number for a productcatalogue to be sent to you (there may be a charge)or download information from their website.

Alternatively, the 'MindinfoLine' is a telephoneinformation and support service which offers vitalconfidential information on a range of mental healthissues and can also give access to specialist legaladvice.

The 'MindinfoLine' can be reached by telephoning0845 766 0163 and is open from 9.00am–5.00pm,Monday to Friday. Calls from a landline are chargedat a local rate.

The 'Legal Advice Line' can be reached bytelephoning 0845 225 9393 and is open from 9am to5pm Monday to Friday. Calls from a landline arecharged at a local rate.

MIND CYMRU3rd Floor, Quebec House, Castlebridge, 5-19Cowbridge Road East, Cardiff CF11 9AB Telephone: 029 2039 5123

Mind Cymru is the Wales-based office of Mind.Services include:

• Raising public awareness of mental health issues; campaigning, conferences

• Mind Link a national network of mental health service users and survivors

• Mind Out Cymru—A lesbian, gay and bisexual mental health network

• Diverse Minds a network of Black and minority ethnic service users User involvement

Mind Cymru supports over 20 Local MindAssociations in Wales, which provide direct servicesto their communities (see Local Services section). Afull description of these services is available fromMind Cymru.

PARKINSON'S DISEASE SOCIETY215 Vauxhall Bridge Road, London SW1V 1EJTelephone: 020 7931 8080 Freephone Helpline 0808 800 0303 available 9.30am–9:00pm, Monday to Friday & 9:30am–5:30pm Saturday www.parkinsons.org.uk

Serious memory problems, confusion, depressionand sleep problems may be associated with the latestages of Parkinson's disease. In addition, someParkinson’s medication may cause the symptoms ofmemory loss and confusion.

The Parkinson’s Disease Society (PDS) produces arange of literature and resources for people withParkinson's, their families,carers and healthprofessionals on all aspects of living with thedisease.

The Parkinson’s Disease Society (PDS) is the leadingauthority in the UK on the condition and a worldleader in research. We campaign for a better qualityof life for people with Parkinson’s wherever they live.We provide expert information on all aspects ofParkinson’s and a local support network for peoplewith Parkinson’s, their carers, families and friends.We are the UK’s leading non-commercial funder ofresearch into the cause, prevention and improvedmanagement of Parkinson’s and are confident thatour work will help lead to a cure. We are a




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Parkinson’s Disease Society continued...

membership organisation but support all peopleaffected by Parkinson’s. We currently have 29,000members from across the UK.

PICKS DISEASE SUPPORT GROUPTelephone: 01792 883684Regional Contact: Pat Coulsonwww.pdsg.org.uk

For information and support on caring for peoplewith frontotemporal dementia. Their onlineinformation is excellent and a newsletter is available.

RADAR12 City Forum, 250 City Road, London EC1V 8AF Telephone: 020 7250 3222www.radar.org.uk

RADAR is a national campaigning body for disability rights.

They provide a range of useful resource booklets,including ‘Doing Work Differently’, ‘Doing MoneyDifferently’, ‘If Only I’d Known that a Year Ago’ and aguide on 'Holidays for the Disabled in the BritishIsles' (send for a Publications List or see theirwebsite). RADAR works with other groups to lobbyfor disability rights and they produce a bi-monthlybulletin for members and affiliated groups.

They also manage the 'National Key Scheme forDisabled Toilets', which can be accessed bytelephone or writing to the above address.Membership of the scheme costs £3.50, which isvery cheap when you consider that the key gives freeaccess to thousands of disabled toilets across thecountry. RADAR also publishes a guide to thelocations of National Key Scheme toilets.

THE RELATIVES & RESIDENTSASSOCIATION 24 The Ivories, 6-18 Northampton Street, London N1 2HYTelephone: 020 7359 8148www.relres.org.uk

The Relatives Association is an organisation ofrelatives and friends of older people in homes andlong-stay hospitals. They can offer support and

advice on the practical, financial and emotionalaspects of caring for someone in a Home, as well asguidelines on what to look for in a Home. TheRelatives Association runs an 'Advice Line', which isopen from 9.30am to 4.30pm Monday to Friday.Telephone: 020 7359 8136.

The Association has several paid staff, but thecharitable organisation relies heavily on the work ofvolunteers. There is a newsletter and a list ofpublications. Yearly membership is available for adonation for both individuals and organisations, butthis can be waived if it cannot be afforded.

THE ROYAL BRITISH LEGION48 Pall Mall, London SW1 5JYFor general enquiries telephone Legionline on 08457 725 725 10am-4pm Monday-Fridaywww.britishlegion.org.uk

The Royal British Legion provides financial, socialand emotional support to all those who have servedand are currently serving in the Armed Forces, aswell as their dependants. Anyone who has served inthe forces for 7 days or more is eligible for their help.From grant-making to disablement pensions advice;from counselling and job retraining to organisingpilgrimages; and from home and hospital visits to theprovision of full nursing care.

SAMARITANSPO Box 9090, Stirling, FK8 2SATelephone: 08457 909090Email: [email protected]

The Samaritans provide continuous support forpeople who are distressed, lonely or feel they needto talk to someone in confidence. The nationaltelephone helpline number—charged at a local rate—is available 24 hours a day.

All local branches—there is one in most main townsacross the UK—also provide face-to-face supportbetween the hours of 8.00 a.m. to 10.00 p.m., andalso will enter into written correspondence withanyone who finds it difficult to talk on the phone. Forbranch details call the main number.


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STROKE ASSOCIATION240 City Road, London EC1V 2PRStroke helpline 0845 3033 100 (open Monday toFriday, 9am to 5pm)E-mail [email protected]

The Stroke Association is the only national charitysolely concerned with combating stroke in people ofall ages. It funds research into prevention, treatmentand better methods of rehabilitation, and helpsstroke patients and their families directly through itscommunity services. These include communicationsupport, family support, information services andwelfare grants. They also campaign, educate andinform to increase knowledge of stroke at all levels ofsociety and act as a voice for everyone affected bystroke.

The Stroke Association produces patient leaflets andfactsheets and Stroke News (a free quarterlymagazine). If you would like further information oradvice about stroke, or have any questions aboutThe Stroke Association, you can contact the strokehelpline.

VITALISE 12 City Forum, 250 City Road, London EC1V 8AFTelephone: 0845 345 1972www.vitalise.org.uk

Vitalise is a national charity providing breaks forpeople with disabilities and their carers. There arefive holiday centres across the UK—in Essex,Cornwall, Nottingham, Southampton and Southportin Merseyside. All the centres are fully equipped toaccommodate disabled users.

During the one or two week breaks at the centres, 24hour care on-call is provided for disabled people bytrained care attendants and nurses so that carers canhave a well deserved break, as well as enjoying aholiday with their loved one. In addition to the careelement, volunteers provide companionship withsocial evenings and trips throughout each week andgenerally enhance the holiday atmosphere. There arespecial Multiple Sclerosis and Alzheimer's Weeks infive centres.

Details of the holidays, costs and a copy of theHoliday Brochure can be obtained by calling theabove telephone number.

OTHER USEFUL WEBSITESThere are other websites for organisations not listedin this booklet which may be useful.

www.direct.gov.ukDirectgov is the place to turn for the widest range ofgovernment information and services. As well asgovernment departments, the site links through torelevant third parties which can offer additionaltrusted advice and support.

www.carers.gov.ukThis web-site is part of making good theGovernment's commitment in ‘Caring about Carers’to ensure that Government Departments provide onthe Internet details of the services or benefitsaffecting carers. They provide all the facts as well aslinks to related web-sites.

www.acecarers.org.ukThe ACE National partnership, led by Carers UK, isworking to support the inclusion of carers in trainingand work, funded by the European Social Fund'sEqual programme.

www.nhsdirect.nhs.ukGet health information and advice on any matter.

www.carers.orgThe Princess Royal Trust for Carers is the largestprovider of comprehensive carers’ support servicesin the UK. Through its unique network of 122independently managed Carers' Centres andinteractive websites the Trust currently providesquality information, advice and support services toalmost a quarter of a million carers, including 13,000young carers.


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Carer’s Support Groups

Section3:Carer’s Support Groups in Cardiff andthe Vale of Glamorgan

There are many organisations in Cardiff and the Valeof Glamorgan which arrange regular group meetingsfor those caring for people served by Mental HealthServices for Older People. Such 'Carers SupportGroups' provide carers with information as well aspractical, social and emotional support. The followinglist represents most of the Carers’ Support Groups inthe area and gives details on the lead organisation(though many groups are arranged jointly), thegroup’s format and how carers can gain access tothis form of support. Please contact the group tocheck meeting times (as these are subject to change)and to enquire about availability of transport andsitting services.

ALZHEIMER’S SOCIETY CARERS’SUPPORT GROUPSContact person for all groups: Kim Pena, SupportServices Manager Telephone: 029 2043 4960• Younger People with Dementia – this group is

specifically for carers who are currently caring for someone with dementia under the age of 65.

• Current Carers Group – for people who are currently in a caring role.

• Sons & Daughters – group especially for children/grandchildren.

• Afternoon Tea – For all carers to have a chat over a cup of tea.

All the groups are held monthly and provide anopportunity for carers to talk freely within a

confidential setting. Staff members are present ateach group and are available to carers to talk on anindividual basis.

BRACKLA HOUSE BRIDGENDCARERS’ SUPPORT GROUPSFor carers of older people with mental health needsin the Western Vale of Glamorgan, Abertawe BroMorgannwg University NHS Trust run carer supportgroups at Brackla House in Bridgend.

• Monthly Open Carers’ Support Group.

• Carers Group run by the Alzheimer’s Society.

For more information on any of these groups pleasecontact: Kath Evans on 01656 645647

CARDIFF COMMUNITYHEALTHCOUNCIL CARER’S MEETINGAny carer of a person who is receiving care from theCardiff & Vale NHS Trust in a Cardiff hospital areinvited to attend Community Health Council (CHC)meetings held at Turnbull Day Hospital (St. David’sHospital and Iorweth Jones Centre). These meetingsare held approximately every three months for carersto meet the local CHC (see entry for CommunityHealth Council). To find out more about thesemeetings please contact the CHC on 029 2037 7407.


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CARERS’ WALES (CARDIFF ANDTHE VALE) GROUPSTelephone: 029 2081 1370Email: [email protected]

The Cardiff and the Vale of Glamorgan branches ofCarers UK, are groups of carers meeting together forinformation sharing, social events and to present theunited voice of carers at a local level. They do nothave a permanent base, but meet once a month atvenues in Cardiff and Barry. For details of the eventsand meeting times, enquirers can ring Carers’ Walesand they will put individual carers in touch with thecarer contact for the branch.

CROSSROADS IN THE VALECARERS’ GROUPSAll carers of people with dementia living in the Vale ofGlamorgan area are welcome to attend any of theCrossroads Carers' Support Group meetingsarranged by Crossroads. Here is a list of the groupsprovided:

• Carer & Service User Social Group, Penarth.

• Carer & Service User Social Group, Barry.

• Carer & Service User Social Group, Western Vale.

• Carer Support Group, Barry.

• CAMEO Group (after full time care has ceased), Various venues.

The groups are held monthly in the location shown.To find out more please contact Joanna Hendry on029 2070 0057.

MORFA DAY HOSPITAL (BARRYHOSPITAL) CARERS’ SUPPORTGROUP Morfa Day Hospital is situated at Barry Hospital. Stafforganise a monthly 'Open Carers' Group' for carersof older people with mental health needs who receiveday care or respite care from Barry Hospital or theBritish Red Cross in Barry. They meet on the lastFriday afternoon of every month at 2pm. However,carers who are not yet receiving services arewelcome to attend. A sitting service and transportcan be made available. For more information contact:Day Hospital Manager on 01446 704004.

SOLACE CARER SUPPORTGROUPS Solace offers a range of carer support groupscovering Cardiff and the Vale of Glamorgan.

• Carers Group - Husbands and Wives caring at home

• Carers Group – Wives caring at home

• Carers Group - Husbands caring at home

• Carers Group – Sons and Daughters

• Men’s Lunch Group

• Carers Group – Husbands only

• Iorwerth Jones Carers Group

• Carers Group for those with depression

For more information on these groups please contact,the Solace office on 029 2052 9832.


Good News for Relatives of People with Dementia!

Here is an online place where you can exchange experiences and get support and

information. Curious? Go to... www.dementiacarers.com

"Dementia is easy to say and easy to write but not so easy to understand"

Dementia CARERSProblems Shared...

This is not a forum for professional carers, but a place, a refuge, an escape for those who find themselves caring

for a loved one suffering from dementia in any form.

• Do you feel somewhat isolated, out on a limb?

• As time goes by are you finding the situation becoming harder to cope with?

• Are you finding it difficult to find local support but would like to share your thoughts with people who

are on a similar journey and really understand what you are talking about?

• Do you live away from parents, one of whom is turning from a wife or a husband into a ‘carer’ and

wonder what the heck is going on?

If your answer is ‘Yes’ to any of these questions, then you can exchange experiences through the message board,

with others who are, or have been, in similar situations.There are a lot of us out there and sometimes a problem

shared can be a problem halved.


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Carer’s Assessments

Section4:Carer’s Assessments

Most carers are aware that the person they care forcan get support. However, they often don’t realisethat they can also get support for themselves. It isthe duty of statutory services (now enshrined in lawin the 'Carers and Disabled Children Act 2000’), toensure that carers needs are assessed. Additionallythere is the Carers (Equal Opportunities) Act 2004,which strengthens the duty of statutory serviceproviders in relation to Carers.

The Carer's Act entitles carers to request that theirown ability to provide care for the person should beassessed by the local authority and the results ofsuch an assessment should be taken into accountwhen the local authority is making a decision aboutthe provision of community care services.

A Carers Assessment looks at your needs andwhether you are able to receive support. All carersneeds are different, however the kind of services youcould receive include a break from caring, help athome, information and emotional support.

The assessment will also look at your ability andwillingness to continue caring. You can get a CarersAssessment even if the person you care for doesn’thave an assessment of their own needs and even ifthe cared for person says they don’t want you tohave your own assessment. If you were assessed inthe past and your needs have changed you can get are-assessment. The assessment is normally carriedout by a social worker, but can also be carried out byany health or social care professional through theCommunity Mental Health Team.

If you look after a partner, relative or friend and caring has a major impact in your lifethen a Carer’s Assesment could help you.


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Preparing for the assessmentA Carers Assessment is your opportunity to highlightyour needs and what would make caring easier foryou. To get the most out of it you may wish to thinkabout, or make some notes on the following:

• Do you and the person you care for live together, and is this working out?

• What you do? This could include: cooking, cleaning, helping with bathing, collecting benefits, shopping and assisting with mobility.

• Do you get enough sleep?

• Do you care during the day and night?

• Is your physical or mental health being affected bycaring?

• Can you leave the person you care for by themselves?

• Are you their only carer?

• Will you, or have you had to give up work?Would you benefit from more flexible working arrangements?

• How often do you get a break from caring?

• Would you welcome the opportunity for further education or training?

• Does the person you care for need more help thanyou can provide?

• What would happen to you and the person you care for in an emergency?

You may wish to talk about these questions with theperson you care for.

What happens after the Carers Assessment?The person completing the assessment with you willdiscuss what you feel would help you to continue tocare (if you choose to continue to care). If there is aneed to provide a service either to you, or the personyou care for this would result in a Care Plan. If it wasdecided that services were not needed at the time ofthe assessment you would be given appropriateadvice and information and signposted toorganisations that may be able to help.

This can include services provided by independent,voluntary and private organisations. You can accessmany of the services mentioned throughout thispublication directly.

If you would like to talk to someone about theCarers’ Assessment before asking for one to bearranged from Social Services you can call theCarers Centre on 029 2022 1439 for information andadvice.

To get a Carer’s Assessment contact either:Cardiff County Council on 029 2053 6444Vale of Glamorgan Council on 01446 731100

You are entitled to a Carers Assessmentby law and it is free of charge.


Carer’s Assessments


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Financial Aspects of Caring

Section5:Financial Aspects of Caring

5.1 Community Care: Paying forservicesHelp with caring is available from both SocialServices and Health Services, and from somevoluntary bodies. If someone is assessed as meetingthe NHS funded Continuing Health Care criteria, thenthe cost of care is funded fully by the Local HealthBoard. If the assessed person does not meet thiscriteria, a financial assessment will determinewhether the care is partially funded by SocialServices or fully funded by the Service User. SocialService charging policies can differ depending on theLocal Authority in which you live.

The first step to getting some help with caring is tobe put in touch with either a Social Worker or aCommunity MentaI Health Team for Older People.The Community Mental Health Team (see entry inLocal Services) is responsible for providing anassessment and care management service. Based onthe referral information, a team member may directthe referrer to a more appropriate service, may offeradvice or arrange to begin a risk assessment of thereferred person’s situation and circumstances. Theresult of the assessment will be shared with thereferred person and their carer and if a care plan isnecessary, they will be involved in the developmentof a care package to meet the risks identified in theassessment. Each package of care should embracethe following aspects of service provision:

• Early identification, assessment and diagnosis of the person’s illness and the provision of a 'named Case Manager' or 'Care Co-ordinator' who will be responsible for co-ordinating a care package of

appropriate services throughout the course of the person’s illness.

• If there are risks to the person related to washing, dressing and bathing, being left alone while a carergoes out for an hour or two, relieving the carer at night, shopping or domestic work, then accessmay be available to practical help in the home from appropriately trained and supervised care staff.

• Access to local specialist day care services for people with dementia in order to give the carer regular breaks from caring, for between 1–5 days per week according to need and availability. Flexible day care services to provide early morning, late evening and weekend cover, along with reliable transport services to and from the daycare setting should also ideally be available.

• Periods of planned respite care for one or two weeks at a time throughout the year within specialist residential or hospital care settings in order that the carer has a longer term break from caring and is relieved of their stress and responsibility for a time. In this way the carer is enabled to continue in their caring role for longer.

• Access to permanent care within specialist residential or nursing homes with care provided bya team of dedicated, suitably trained and experienced staff. The service user and carer/s choice of care setting will depend upon whether the environment is able to manage the risks identified in the assessment and care plan, the availability of care beds in homes and how the care home fees are to be met.

Note: These financial information pages are general guidelines only and information islikely to change. Please check with the appropriate departments provided withregards to your personal situation.


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• Access to information, advice and emotional support for the carer throughout their years of care- giving, with the availability of individual counselling, carer support groups, telephonehelplines, and on-going befriending contact.

Many of the above components of care are now inplace within Cardiff and the Vale of Glamorgan area(although some areas are better served than others).

Services may be provided by Social Services directlyor by contract with private domiciliary care agenciesfrom an approved provider list. You should be able todiscuss the care package with the Social Worker andbe given a written copy. Depending on the localcharging policy the social worker may then have tocomplete a financial assessment with the person ortheir representative to find out what contribution theperson will have to make to the cost of the carepackage arranged by Social Services. If you areconcerned about completing a financial assessment,discuss this with the Social Worker who should beable to explain how the assessment is used and helpyou complete the assessment if you wish. If youchoose not to complete the financial assessment youcan still have the arranged services, but you will becharged the full cost for them. It is possible toarrange some care privately by contacting domiciliarycare agencies directly. However, by doing this you donot get the benefit of a needs assessment by aprofessional and information on the range of helpavailable locally and may find that you are payingunnecessarily for care.

5.2 Financial Help for People Caringat HomeAttendance Allowance (AA)Attendance Allowance is a weekly benefit for peoplewho are aged 65 or over and who need help withpersonal care because of an illness or disability.There are two rates of Attendance Allowance:

• a lower rate of £47.10 for people needing help by day or night

• a higher rate of £70.35 for people who need help by day and night

This benefit is not means tested or taxable and doesnot depend on national insurance contributions,savings or income. Normally applicants must haveneeded help for six months prior to the application,but people with a terminal illness can claimAttendance Allowance immediately, (a Special RulesForm DS1500 must be included with the claim whichis normally obtained from the GP or Hospital doctor).

Note: If the person being cared for is in receipt ofAttendance Allowance, their carer is then entitled toapply for Carers Allowance (CA) (formerly Invalid CareAllowance). See later section.

How to claim Attendance Allowance: Get form AA1 from The Disability & Carers Service(Telephone: 029 2058 6002) or ring the BenefitEnquiry Line (0800 882200). You can also downloada form from the Department of Work & Pensionswebsite at www.dwp.gov.uk or complete the formonline.

Disability Living Allowance (DLA) If the person you are looking after is younger than65, needing help with personal care, or findingwalking difficult, they can apply for this benefit whichincludes a 'care component' and a 'mobilitycomponent'.

The 'care component' has three rates. To get themiddle or highest rate care component a disabledperson must need help with problems such aswashing, dressing, and using the toilet because theyare ill or disabled, or need continual supervisionthroughout the day or night in order to avoidsubstantial danger to themselves or others. Thelowest rate is for people needing a lesser amount ofcare, for example help with preparing a main meal.

This benefit is not means tested or taxable and doesnot depend on national insurance contributions,savings or income. Normally applicants must haveneeded help for three months prior to the application,but people with a terminal illness can claim DLAimmediately, (a Special Rules Form DS1500 must beincluded with the claim which is normally obtainedfrom the GP or Hospital doctor).

Current amounts are (weekly):

• highest rate – £70.35

• middle rate – £47.10

• lowest rate – £18.65

DLA can also provide help via its 'mobilitycomponent' for people who have difficulty gettingaround. There are two rates. One for people who areunable to walk at all or have difficulty in walkingbecause they are ill or disabled, and one for peoplewho can walk but need someone with them to makesure they are safe, or to help them find their wayaround most of the time.



Current amounts are (weekly):

• higher rate - £49.10

• lower rate - £18.65

Note: If a person is in receipt of either the middle orhigher rate of the care component their carer iseligible to apply for Carers Allowance (CA). See latersection.

How to claim Disability Living Allowance: Get claim pack DLA1 from The Disability & CarersService (Telephone: 029 2058 6002) or ring theBenefit Enquiry Line (0800 882200). You can alsodownload a form from the Department of Work &Pensions website at www.dwp.gov.uk or completethe form online.

The Blue Badge Scheme (formerly Orange BadgeScheme)The higher rate mobility component qualifies peoplefor this scheme which extends your car parkingrights. People receiving the higher rate mobilitycomponent can also apply for exemption from RoadTax (officially known as Vehicle Excise Duty).However, carers should note that technically the carshould then only be used "by or for the purposes ofthe disabled person."

How to claim: For information contact Cardiff CityCouncil on 029 2087 2087 or Vale of GlamorganCouncil on 01446 730402

Carers Allowance (formerly Invalid CarersAllowance)This is a benefit paid only to carers and is intendedto help those who are unable to work full-timebecause they look after a severely disabled person.To qualify, you must:

• Be looking after someone who is getting the middle or highest rate care component of Disability Living Allowance or Attendance Allowance and;

• Spend at least 35 hours a week looking after your relative or friend.

The basic rate of CA is £53.10 a week, but you mayget more if you have children, a spouse, or someonelooking after your children living with you. You areallowed to earn up to £95 (after tax) a week aftertaking off allowable expenses without it affectingyour benefit.

CA does count as taxable income, and is taken intoaccount for assessing Income Support. It also cannotbe claimed at the same time as certain other SocialSecurity benefits.

How to claim Carers Allowance: Obtain the CA claim pack DS700 from The Disability& Carers Service (Telephone: 029 2058 6002) or ringthe Benefits Enquiry Line on (0800) 882200. You canalso download a form from the Department of Work& Pensions website at www.dwp.gov.uk or completethe form online.

Income Support This benefit is for people under 60 years* who do nothave enough money to meet their weekly needs. Theperson claiming, or the person and their partner,usually must not have over £16,000 in savings andnot be working or not working more than 16 hoursper week. Savings between £6,000 and £16,000usually affect the amount of benefit you get. Incomesupport qualifies you for free prescriptions, eye tests,and dental treatment, help towards the cost ofglasses and any travel to hospital for NHS treatmentand help with rent and Council Tax. Exceptionalexpenses are dealt with through the Social Fundwhich consists of loans, and through CommunityCare grants. These grants are to help elderly ordisabled people lead independent lives in thecommunity.

If the person with dementia is living alone and inreceipt of Income Support and DLA and no-one is inreceipt of Carers Allowance for looking after them,the person may be entitled to a Severe DisabilityPremium.

If you qualify for Income Support and CarersAllowance you can apply for the Carers' Premium, anextra amount paid with Income Support. You canapply for this even if you do not actually receive CAbecause it overlaps with other benefits.

*People over 60 years may be eligible for the PensionCredit. Contact DWP on free phone 0800 99 1234 orvisit www.thepensionservice.gov.uk

How to claim Income Support:You must register your claim by phone. Pleasetelephone 0800 055 6688. A textphone service isavailable if you have a speech or hearing impairment0800 023 4888.

Council Tax Exemptions and Discounts Council Tax is a tax on property, but also takes intoconsideration the people who live there. Someproperties can be exempt, for example if the residentis in hospital or residential care, or where a carer hasgone to a relative's home to care for them. There arealso certain discounts. People living alone can claima discount and so can people living with people whoare 'discounted'. This list includes people who are'severely mentally impaired' (this can include people


Pages 48 & 49

suffering from dementia), and carers looking afteranyone other than their husband/wife or child under18. There are also reductions for homes occupied by a disabled person where alterations have been madeto the property to make it more suitable.

How to claim: By letter to your local Council. If youare on a low income you may be able to get helpfrom the Council Tax Benefit Scheme. If you claimIncome Support you can claim Council Tax Benefit atthe same time. If you are not claiming IncomeSupport you can get a Council Tax Benefit claim formfrom your council.

Housing Benefit Housing Benefit is paid by local Councils to assistpeople who need help to pay their rent. Help isavailable for Council or Housing Association tenantsand tenants of private landlords.

How to claim: If you claim Income Support you willget forms to claim Housing Benefit with the IncomeSupport claim form. Otherwise apply to your localCouncil offices and get the Housing Benefit Form.Housing Benefit is awarded for limited periods andyou will have to make a fresh claim at the end ofeach benefit period.

Information on benefits and allowances can befound at www.direct.gov.uk

5.3 Care in a Residential or NursingHomeFrom the 1st April 1993 Local Authorities took overthe responsibility for arranging Residential andNursing Home Care and if help is needed to fundtheir placement you will first need to make contactwith Social Services in your area. If you do notalready have a Social Worker they will arrange forsomeone to visit you who will carry out anassessment of need. If it is agreed that your relativeneeds residential or nursing care the next step will bea financial assessment to see how much he/she willhave to contribute to the cost.

A national charging system (which means serviceusers and carers are financially assessed in order tomake a contribution) applies to people whom theLocal Authority agrees to support in a home of anytype. The Local Authority pays part of the fees set bythe care home and the person needing the care paystheir assessed contribution to the fees.

A financial assessment will be completed on ALLservice users going into a residential or nursingplacement where funding from the Local Authority issought. Where a service user has more than £22,000

they will be expected to pay the full cost until theirsavings fall below this level.

Savings between £20,750 and £22,000 are countedas part of your weekly income—£1 for every £250above the lower savings limit, whilst savings below£20,750 are not included when calculating yourcontribution. The Local Authority will take intoaccount any benefits a service user is entitled towhen carrying out the financial assessment so willexpect people to make up their income by claimingas much social security benefit as they are entitledto. The Local Authority then uses the nationalcharging rules to assess how much of a resident'sincome must be paid towards the fees, after allowinga certain sum for personal expenses. Most income,including state and occupational pensions, is takeninto account, although the mobility component ofDisability Living Allowance is ignored.

Some people are eligible for the full cost of their carein a care home to be funded by the NHS under theirContinuing NHS Health Care criteria. The NHS isresponsible for meeting the cost of all nursing careprovided by registered nurses to all eligible residentsin homes that provide nursing care—at a standardrate of £119.66 per week (in Wales)—irrespective of aperson's savings. This is subject to an assessmentcarried out by the Local Health Board. Other careprovided within the setting e.g. meals, laundryfacilities etc., are excluded from this and must bepaid for in accordance with any financialassessments that are undertaken. Please note thatthe residential care element in a nursing home will besubject to a charge based on the resident’s financialassessment. Where disputes arise individuals shouldcontact the Local Health Board who may convene anindependent review panel. If they do not get asatisfactory resolution they can approach the HealthService Ombudsman.

People paying for themselves can, as before, claimAttendance Allowance or the care component ofDisability Living Allowance (the latter if they are under65). If their savings fall below £22,000 they can turnto the Local Authority for help. If financiallysupported by the Local Authority on a permanentbasis, they will stop receiving Attendance Allowanceor the care component of Disability Living Allowanceafter four weeks. The system is slightly different forpeople in homes for a temporary stay. If problemsarise with benefits for carers because of a relativesadmission, the relative should see a social worker orcontact the Department of Works and Pensions foradvice.

It is worth noting that although the Disability Living



Allowance is mainly applicable to people under 65, itwill continue to be paid after the age of 65 if it haspreviously been received before that age.

If someone living alone in their own house goes intoa Residential or Nursing Home permanently then thevalue of the house is disregarded for up to 12 weeks,thereafter it is taken into account when theircontribution to the charge is calculated. Where theresident no longer occupies a dwelling as his home,its value should still be disregarded where it isoccupied in whole or in part by:

• the resident’s partner/or former partner (except where the resident is estranged or divorced from the partner/former partner)

• a lone parent with the dependent child who is the resident’s estranged or divorced partner

• a relative of the resident or member of his family who- is aged 60 or over, or - is aged under 16 and is a child whom the

resident is liable to maintain, or- is incapacitated

If you live with someone who may need to go intoresidential or nursing care and you are unsure aboutwhether your home will be taken into considerationyou may wish to consult a solicitor for advice. You can also get advice and information on legal,financial, and welfare rights by ringing Carers Waleson 029 2081 1370 or the Carers Centre on 029 2022 1421.

People can receive a written explanation of how theirmeans tested charge for care has been calculated ineach individual case.

It is also important for you to have all the relevant upto date information that will help you and yourrelative when making this decision. More detailedleaflets on charging for residential care and payingfor more expensive care can be obtained from yoursocial worker (or from the Carers Centre). *Please note all figures quoted are for 2009/10 only and may besubject to change.

Choosing a HomeYou have the right to choose a care home but findingone that is right might take some time. You shouldmake sure the care home you choose has thefacilities, equipment and staff with the right trainingto meet your needs. Each local Council sets amountsthat they normally pay for someone with yourassessed needs. If you want to move into a carehome that is more expensive, you may need to find away to pay the difference.

You should also be given a list of registeredResidential and Nursing Homes in your locality byyour Social Worker. Arrange to visit any homes whichyou are considering. It is useful to draw up a list ofquestions beforehand and to describe the needs ofthe person needing care to the manager of the hometo ensure that the home will be able to provide thenecessary care. (A useful list of questions producedby the Alzheimer's Society can be found in the LocalServices - Residential Care section. Telephone 0292052 1872.) You can also visitwww.direct.gov.uk/DisabledPeople for moreinformation.

Moving to a care home in another Local AuthorityLocal authority funded care in the care home remainswith the local authority area the individual is movingfrom. Residents who want to move to a home inanother area should be allowed to do so. There maybe problems if homes in the new area are moreexpensive than your social services will normally pay.Some authorities will only pay the fee levels thatapply in their own area. However, there might becircumstances where moving to another area couldbe an integral part of an individual’s assessed needs,e.g. being close to relatives. If a local authority willnot pay above their own area’s fee levels, theyshould be challenged, as it implies that they are notprepared to look at an individual’s assessed needs.

Regarding the nursing contribution, if a personmoves from one care home to another in a differentcountry (e.g. from Wales to England), it is the level ofnursing care funding applicable in the destinationthat applies.

5.4 Financial Arrangements for theCared For PersonThere may come a time when the person you carefor is no longer able to make decisions about theirown financial affairs. In order to take over theresponsibility for handling their affairs there are anumber of things you will need to know about.

Collecting Benefit or Pension If it is difficult for the person you care for to get tothe Post Office because of a physical disability orillness, you can become their "Agent”. The Agentreceives a card which they show to the Post Officeeach time they cash a benefit cheque. (Note: Benefitand Pensions normally now have to be paid directinto a bank/building society account or a Post Officecard account—arrangements to collect on a personsbehalf need to be arranged with the bank/buildingsociety/post office).


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Appointing an agent can only be done by somebodywho is still capable of understanding what thisinvolves.

Appointeeship If the person you care for can't deal with their ownSocial Security benefits or pension because of theirmental incapacity, Appointeeship is put in place bythe Department of Work and Pensions. They maymake a home visit or ask for medical evidence tosatisfy themselves that the person is no longer ableto handle their own affairs. They will then visit you tocheck that you understand what is involved and aresuitable to be an Appointee. As an Appointee you will have to:

• Find out what benefits the person could be entitled to.

• Fill in their claim forms.

• Receive their payments in your name.

• Use their money carefully to pay their bills, buy their food and personal items.

• Receive and reply to any Social Services letters.

• Let Social Services know at once if there are any changes in the circumstances of the person you care for.

Appointeeship can be cancelled by the Appointee, orit can be terminated if the Court of Protectionappoints a Deputy or the person recovers or dies.They can also terminate the arrangement if they thinkmoney is not being handled properly, so it isimportant to keep records and receipts to show howthe money has been used.

5.5 When Caring CeasesWhen the person you care for dies you may need toarrange the funeral, return equipment, sort throughpersonal belongings, contact the bank, benefitsagency, local authority etc. It is important to giveyourself time to deal with your emotions, as you willmost probably be in shock, even if you wereprepared for the person’s death.

Everyone reacts differently to the death of someoneclose. Not being a carer anymore may bring a lot ofunexpected emotions. You may feel relief at nothaving to spend time caring, guilt that you feelrelieved as well as experiencing regret or sadness.Don’t ignore these feelings and changes to your life.Friends and relatives are often reluctant to talk aboutthe person who has died out of fear of upsetting you.You may be a private person and not want to shareintimate feelings and memories. You need to behonest with those around you about how you want to

deal with your feelings. If you would like to talk tosomeone contact Cruse, a national charity offeringfree, confidential help to bereaved people.Telephone: 0844 477 9400 email [email protected] or go towww.crusebereavementcare.org.uk.

Medical CertificateIf the person you care for dies at home you will needto contact the GP. The doctor will give you a MedicalCertificate and a Formal Notice, which explains howyou register the death. If the person dies at night orat the weekend you will need to contact the GP Outof Hours service. To do this call your GP surgerynumber, an answer phone message will give you theOut of Hours number to call. If the person you carefor dies in hospital or a nursing home the staff willsort out the Medical Certificate. You can request tosee the person’s body before they are taken to thefuneral home. If the death is sudden or the cause ofdeath is uncertain, the doctor will refer the death to acoroner—this is perfectly normal.

When you have a medical certificate you can contacta funeral director. The funeral director will be able tosupport and advise you through this process.

Registering the deathOnce you have the Medical Certificate the death willneed to be registered. A death must be registeredby the Registrar in the district in which the deathoccurred. However, if it is inconvenient for you toattend the Register Office for the area where deathtook place you may be able to attend your localregister office. The death should be registered within5 days although this may be extended by theRegistrar if necessary. Contact details for your localregistrar are given below.

In certain circumstances the death will have to bereferred to the Coroner by the doctor or by theRegistrar and the death cannot be registered until theCoroner has decided what action to take. TheCoroner may do one of three things:

1. Decide to take no action and inform the Registrar accordingly

2. Hold a Post Mortem examination and issue a Form 100B which takes the place of the Medical Certificate from the doctor.

3. Hold an Inquest. The Coroner’s office will advise you what to do in these circumstances.

The death should be registered by a relative,someone who was present at their death or by theperson arranging the funeral. It will take about 30minutes. You will need to take:



• Medical Certificate of cause of death.

• NHS number/medical card (if you have them).

• Birth and Marriage Certificates (if you have them).

You will also need to be able to tell the Registrartheir:

• Full name (and maiden name if appropriate).

• Address.

• Date and place of birth (town, county and country).

• Occupation.

• Date and place of death.

• Marital status—if they were married, the name, address, date of birth and occupation of their spouse.

• Whether they had a pension or allowance from public funds e.g. Civil Service or Army pension.

The Registrar will give you:

• A Certificate for Burial or Cremation for the funeral director, which is known as the “green form”. This is free of charge.

• A Certificate of Registration of Death for social security purposes.

• If you wish to purchase it, a Death Certificate. Youmay need several copies for the will, banks/building societies, insurance companies etc.It is cheaper to buy copies within a month of someone’s death.

• Leaflets about benefits and tax.

It is important to check the register carefully beforesigning. It is a legal record which is difficult to correctat a later date.

Cardiff Register Office, City Hall, Cathays Park,Cardiff, CF10 3ND. Telephone: 029 2087 1684 or 029 2087 1690. Opening hours are 9.00am to 4.30pm

Barry Register Office, Civic Offices, Holton Road,Barry CF63 4RU. Email: [email protected] Telephone: 01446 709490.Open Mon-Fri, 9.00-13.00, 14.00-16.00

Penarth Register Office, West House, Stanwell Road,Penarth CF64 2YGTelephone: 029 2070 7862.Open Mon-Fri, 9.00-13.00, 14.00-16.00

Paying for the funeralBefore paying for the funeral find out if the personyou cared for had:

• Prepayment funeral plan.

• Pension scheme/insurance plan which included funeral costs.

• National Savings (these can be released to pay for costs).

• Membership to an association that pays money when a member dies.

Funerals can be expensive, so work out how muchyou can spend before you start the arrangements.The funeral can be paid out of the estate—this is themoney, property and possessions of the person whohas died. If it takes a while for their estate to besorted out, banks and building societies will oftenrelease money to pay for funeral expenses.

Funeral PaymentDepending on your circumstances, you may be ableto get help to pay for the funeral costs. You can gethelp if you get certain benefits including IncomeSupport, Income-based Jobseeker's Allowance,Pension Credit, Housing Benefit, Council Tax Benefit,Child Tax Credit or Working Tax Credit. You can applyup to 3 months after the date of the funeral. For moreinformation contact Job Centre Plus on 0845 6000 345.

If you can’t get help with paying for the funeral, youcan ask the Funeral Director if it is possible to pay ininstallments.

Cremation and Burial ServicesIn Cardiff there is management and maintenance of aCrematorium and 9 Cemeteries throughout the city.For advice on and options for internments orcremation for Cardiff City contact the departmentbelow.

Thornhill ReceptionBereavement Services DivisionCardiff County CouncilThornhill RoadLlanishenCardiff CF14 9UATelephone: 029 2062 3294/029 2062 3295 Email: [email protected]

Alternatively, for both Cardiff and the Vale ofGlamorgan, contact a Funeral Director for advice andservices. The Yellow Pages have plenty listed.


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Legal /Protection Aspects of Caring

Section6:These pages are designed to explain some of the legal and protection issues that mayarise while you are caring for someone. To the best of our knowledge the informationcontained is correct. If you have any queries or questions about these issues, it wouldbe advisable to contact your named social worker.

6.1 Mental Health Act 1983A brief summaryThe principal legislation which governs the formaldetention and care of “mentally disordered” people inhospital in England and Wales, is the Mental HealthAct 1983.

On 3rd November 2008, a number of changes weremade to the 1983 Act by the Mental Health Act 2007:these are reflected in what follows.

The 8 guiding principles of the 1983 Act are groupedunder the following headings: empowerment, equity,effectiveness and efficiency. Further details can befound in the Mental Health Act 1983 Code ofPractice for Wales.

The Language used in the Mental Health ActThe term “mental disorder” which is used throughoutthe Act means “any disorder or disability of themind”. An “Approved Mental Health Professional” isa professional who has undertaken training and actson behalf of the local authority, for the purposes ofthe Mental Health Act. A “Responsible Clinician” is aprofessional who has undertaken training and beenapproved to act as such, who is in charge of the careand treatment of a person detained under the Act.

Admission to HospitalIt is the intention of the Act that, wherever possible,people are admitted to hospital “informally”, i.e.without using the formal powers of the Act [Section131]. In the event of a person being unwilling to gointo hospital it may be possible to compulsorilydetain them for assessment and/or treatment in theinterests of their own health or safety, or for the

protection of others. The grounds for compulsoryadmission, assessment or treatment are that theperson is suffering from a mental disorder of a natureor degree that warrants his/her detention in hospitalfor assessment and/or treatment and that suchadmission is necessary in the interests of the healthand safety of the person and/or the protection ofother people. Where the detention in hospital is fortreatment, there must be appropriate medicaltreatment available.

The Approved Mental Health Professional hasresponsibility for co-ordinating the process of MentalHealth Act assessment and must be satisfied thatcompulsory detention is the most appropriate way ofproviding care and medical treatment. In reachingthis decision they will interview the patient in a‘suitable manner’, which should take into accountlanguage and cultural needs of the individual,consider the social circumstances of the case, takeaccount of any previous psychiatric history andconsider alternative resources to detention inhospital. The application by the Approved MentalHealth Professional must be supported by twomedical recommendations.

The patient in hospitalIn principle, the informal psychiatric patient is in asimilar legal position to the patient in a generalhospital. However, in an emergency, if it becomesnecessary to undertake a Mental Health Actassessment on an informal inpatient, the Act allowsfor a doctor to hold the patient for a period of up to72 hours to give time for completion of Section 2 or3. It is also possible for a nurse of the “prescribed

Legal/Protection Aspects of Caring


class” to hold a patient for a period of up to 6 hoursto enable a patient to be examined by a doctor.

It is the responsibility of the Hospital Managers tomake sure that a detained patient receivesinformation about the powers of detention, their rightof appeal to the Hospital Managers, and to theMental Health Review Tribunal, their right to accessan Independent Mental Health Advocate and theirright to refuse certain types of treatment.

Consent to treatmentFor patients detained under the Mental Health Act1983, Part IV of the Act goes to some lengths toensure that patients comprehend the nature ofplanned treatment programmes. Drug treatment formental disorder may be given to a patient with orwithout the patient’s consent during the first threemonths of detention in hospital. (This does not applyto medical treatment for physical illness—this isgoverned by the Mental Capacity Act 2005.) At theend of the 3 month period, the patient’s consent or asecond opinion will be required to continue withfurther administration of treatment. A patient who hascapacity cannot be given ECT [Electro ConvulsiveTherapy] if s/he does not want it, even if s/he isdetained under the Mental Health Act. Thesesafeguards can be set aside where the need fortreatment is both serious and urgent—for example,to save a patient’s life.

Mental Health Review TribunalsThe Mental Health Review Tribunal is a part of theCourt system and is responsible for hearing patientappeals against detention.

Tribunal panel members consist of a legal member, a medical member, and a lay member. All haveexperience considered suitable by the LordChancellor.

Patients detained under Section 2, 3, 7[Guardianship] and 17 [Supervised CommunityTreatment] have the right of appeal to a Tribunal asdo patients detained under hospital orders. Appealscan be made by the patient or their nearest relative.Information on how this can be done may beobtained from the Hospital Managers, or from staffon the hospital ward where the patient is detained.

All detained patients who appeal to the Tribunal areentitled to free legal representation. The Law Societyissues a list of solicitors and their employees who arecompetent to represent patients at a Mental HealthReview Tribunal.

Discharge from HospitalInformal patients may discharge themselves at anytime. Patients detained under compulsory ordersmay be discharged when their ‘Section’ expires, orprior to this at the discretion of the ResponsibleClinician. The patient’s nearest relative may apply todischarge a detained patient by giving 72 hoursnotice in writing to the Hospital Managers. Thisnotice can be overruled by the Responsible Clinician,if, in their opinion the patient, if discharged, would belikely to act in a manner dangerous to themselves orothers.

Supervised Community TreatmentPatients who have been detained in hospital fortreatment (mainly under Section 3) can, if theirResponsible Clinician and Approved Mental HealthProfessional agree, be placed on a CommunityTreatment Order. This allows the patient to live in thecommunity subject to certain conditions. If theResponsible Clinician thinks that the patient’s mentalhealth is deteriorating and that they need treatmentin hospital, then the Responsible Clinician can recallthe patient to hospital for up to 72 hours. Patients onSupervised Community Treatment can ask theirResponsible Clinician, the Hospital Managers and theMental Health Review Tribunal to discharge themfrom this section. The patient’s nearest relative mayalso ask for the patient’s discharge. Patients alsohave a right to access the Independent MentalHealth Advocacy service, if they wish.

After Care [S.117]It is the joint responsibility of both the Health Serviceand the Local Authority to provide aftercare fordischarged patients previously detained under atreatment [not assessment] order. The form andextent of this aftercare is not defined by thelegislation, but should be based on the patient’sneeds. The patient and/or their family cannot becharged for aftercare given under Section 117.Aftercare should continue to be provided for as longas the patient needs it and can only end with thejoint agreement of both the Health and the LocalAuthority.

Though not a legal requirement, where some careinput from a voluntary organisation [e.g. voluntaryhousing agency] is an element of the S.117 dischargeplan, that organisation should be included indiscussions of an individual’s aftercare needs.

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6.2 GuardianshipThe purpose of guardianship is to enable patients toreceive community care within an authoritativeframework. That framework should provide aminimum of constraint to allow the patient to achieveas independent a life as possible within thecommunity, and lessen the risk of hospital re-admission. As such, with the exception of the powerto take and retake a patient, the powers of theguardian are not capable of enforcement but rely onthe co-operation of the patient and can be seen asan effective community resource and form ofaftercare.

Guardianship can be applied to persons over sixteenyears old who have a mental disorder, and where it isnecessary in the interests of the welfare of theperson and for the protection of others.

The guardian can be a local authority or a nominatedprivate person. Application is made by the nearestrelative or an Approved Mental Health Professionalwith the support of two medical recommendations.The guardian has the power to require the personsubject to the order to reside at a specified place, toattend specific places at specific times for thepurpose of medical treatment, occupation, educationor training, and to give access to the place wherethat person resides to any medical practitioner,Approved Mental Health Professional or other personspecified by the guardian.

6.3 Healthcare Inspectorate Wales(HIW) [s.120-121]HIW is independent of the Hospital. It carries outfunctions on behalf of the National Assembly forWales. HIW uses a variety of people to carry out itswork, including doctors, lawyers, nurses, socialworkers, psychologists and other specialists as wellas interested lay persons. HIW reviews the operationof the Act and the way its powers of detention andconsent to treatment provisions are exercised, andalso ensures the rights of detained patients are beingupheld. HIW visits all hospitals and units wherepatients are detained under the Act. They caninterview patients, examine legal documentation andmonitor deaths of detained patients.

6.4 Mental Health Act 1983 Code ofPractice for WalesFrom 3rd November 2008, there is a new Code ofPractice for Wales. This provides guidance to thosepeople who operate the Mental Health Act andshould be followed unless there are good reasonsnot to do so.

The Code can be viewed on hospital wards andMental Health Teams also have copies.

For further information, guidance, etc about theMental Health Act, please visitwww.wales.nhs.uk/mentalhealthact1983

6.5 Mental Capacity Act 2005The Mental Capacity Act 2005 provides the legalframework for acting and making decisions on behalfof individuals who lack the mental capacity to makeparticular decisions for themselves. Everyoneworking with and/or caring for an adult who may lackcapacity to make specific decisions must complywith this Act when making decisions or acting forthat person. The same rules apply whether thedecisions are life-changing events or everydaymatters.

Before making an application under the MentalHealth Act (MHA), doctors and Approved MentalHealth Professionals should consider whether theycould achieve their aims safely and effectively byusing the Mental Capacity Act (MCA) instead. If adoctor believes that they can safely assess or treat aperson under the MCA, they do not need to considerusing the MHA.

Sometimes it will be necessary to consider using theMHA rather than the MCA because it is not possibleto give the person the care or treatment they needunder the MCA but it is important to remember that aperson cannot be treated under the MHA unless theymeet the relevant criteria for being detained. Forexample, compulsory treatment under the MHA isnot an option if the patient’s mental disorder doesnot justify detention in hospital, or the patient needstreatment only for a physical illness or disability.

There is no reason to assume a person lackscapacity to make their own decisions just becausethey are subject (under the MHA) to detention,guardianship or supervised community treatment butpeople who lack capacity to make specific decisionsare still protected by the MCA even if they aresubject to the MHA (this includes people who aresubject to the MHA as a result of court proceedings).



Subject to certain conditions, the MHA allowsdoctors to give patients who are liable to be detainedtreatment for mental disorders without their consent—whether or not they have the capacity to give thatconsent. But doctors treating people for mentaldisorder under the MHA cannot simply ignore aperson’s capacity to consent to treatment. As amatter of good practice (and in some cases in orderto comply with the MHA) they will always need toassess and record whether patients have capacity toconsent to treatment, and if so, whether they haveconsented to or refused that treatment.

Power of AttorneySometimes one person will want to give anotherperson authority to make a decision on their behalf.A power of attorney is a legal document that allowsthem to do so. Under a power of attorney, thechosen person (the attorney or donee) can makedecisions that are as valid as one made by theperson (the donor).

Before the Enduring Powers of Attorney Act 1985,every power of attorney automatically became invalidas soon as the donor lacked the capacity to maketheir own decision. But that Act introduced theEnduring Power of Attorney (EPA). An EPA allows anattorney to make decisions about property andfinancial affairs even if the donor lacks capacity tomanage their own affairs.

The Mental Capacity Act replaced the EPA with theLasting Power of Attorney (LPA). It also increased therange of different types of decisions that people canauthorise others to make on their behalf. As well asproperty and affairs (including financial matters),LPAs can also cover personal welfare (includinghealthcare and consent to medical treatment) forpeople who lack capacity to make such decisions forthemselves. The donor can choose one person orseveral to make different kinds of decisions.

Since the Mental Capacity Act came into force in2007, it is not possible to make new EPAs. Somedonors will have created EPAs before the Act cameinto force with the expectation that their chosenattorneys will manage their property and affairs in thefuture, whether or not they have capacity to do sothemselves. If donors still have capacity, they cancancel the EPA and make an LPA covering theirproperty and affairs. They should also notifyattorneys and anyone else aware of the EPA (forexample, a bank) that they have cancelled it.

Some donors will choose not to cancel their EPA orthey may already lack the capacity to do so. In suchcases, the Act allows existing EPAs, whether

registered or not, to continue to be valid so thatattorneys can meet the donor’s expectations. An EPAmust be registered with the Office of the PublicGuardian when the attorney thinks the donor lackscapacity to manage their own affairs, or is beginningto lack capacity to do so.

Lasting Power of Attorney (LPA)Only adults aged 18 or over can make an LPA, andthey can only make an LPA if they have the capacityto do so.

1. Personal welfare LPAsLPAs can be used to appoint attorneys to makedecisions about personal welfare, which can includehealthcare and medical treatment decisions. Thestandard form for personal welfare LPAs allowsattorneys to make decisions about anything thatrelates to the donor’s personal welfare. But donorscan add restrictions or conditions to areas wherethey would not wish the attorney to have the powerto act. A personal welfare LPA can only be used at atime when the donor lacks capacity to make aspecific welfare decision.

A personal welfare LPA allows attorneys to makedecisions to accept or refuse healthcare or treatmentunless the donor has stated clearly in the LPA thatthey do not want the attorney to make thesedecisions. An attorney can only consent to or refuselife-sustaining treatment on behalf of the donor if,when making the LPA, the donor has specificallystated in the LPA document that they want theattorney to have this authority.

2. Property and affairs LPAsA donor can make an LPA giving an attorney theright to make decisions about property and affairs(including financial matters). Unless the donor statesotherwise, once the LPA is registered, the attorney isallowed to make all decisions about the donor’sproperty and affairs even if the donor still hascapacity to make the decisions for themselves. Inthis situation, the LPA will continue to apply when thedonor no longer has capacity.

Alternatively a donor can state in the LPA documentthat the LPA should only apply when they lackcapacity to make a relevant decision. The fact thatsomeone has made a property and affairs LPA doesnot mean that they cannot continue to carry outfinancial transactions for themselves. The donor mayhave full capacity, but perhaps anticipates that theymay lack capacity at some future time. Or they mayhave fluctuating or partial capacity and therefore beable to make some decisions (or at some times), butneed an attorney to make others (or at other times).

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The attorney should allow and encourage the donorto do as much as possible, and should only act whenthe donor asks them to or to make those decisionsthe donor lacks capacity to make. However, in othercases, the donor may wish to hand overresponsibility for all decisions to the attorney, eventhose they still have capacity to make.

If a donor does not restrict decisions the attorneycan make, the attorney will be able to decide on anyor all of the person’s property and financial affairs.

Court of ProtectionThe Court of Protection is a specialist court to dealwith decision-making for adults (and children in a fewcases) who may lack capacity to make specificdecisions for themselves. The new Court ofProtection replaces the old court of the same name,which only dealt with decisions about the propertyand financial affairs of people lacking capacity tomanage their own affairs. As well as property andaffairs, the new court also deals with seriousdecisions affecting healthcare and personal welfarematters. These were previously dealt with by theHigh Court under its inherent jurisdiction.

The new Court of Protection is a superior court ofrecord and is able to establish precedent (it can setexamples for future cases) and build up expertise inall issues related to lack of capacity. It has the samepowers, rights, privileges and authority as the HighCourt. There will usually be a fee for applications tothe court.

In cases of serious dispute, where there is no otherway of finding a solution or when the authority of thecourt is needed in order to make a particular decisionor take a particular action, the court can be asked tomake a decision to settle the matter using itspowers. However, if there is a need for ongoingdecision-making powers and there is no relevantpower of attorney, the court may appoint a deputy tomake future decisions. It will also state whatdecisions the deputy has the authority to make onthe person’s behalf.

It is for the court to decide who to appoint as adeputy. Different skills may be required depending onwhether the deputy’s decisions will be about aperson’s welfare (including healthcare), their financesor both. The court will decide whether the proposeddeputy is reliable and trustworthy and has anappropriate level of skill and competence to carry outthe necessary tasks.

Receivers appointed by the court before the MentalCapacity Act are treated as deputies and keep theirexisting powers and duties.

AppointeeshipAppointeeship is where a person acts on behalf ofanother to receive their benefits and use the moneyto pay household expenses such as bills, food andpersonal items.

The Department for Work and Pensions acting onbehalf of the Secretary of State can authorisesomeone else to act on a person’s behalf if theperson is over 18 and incapable of managing theirown affairs. This is called an appointment to act andthe person or organisation appointed to act is calledan appointee. An appointment to act is made underRegulation 33 of the Claims and PaymentsRegulations 1987.

An appointment to act can only be made in favour ofa person aged 18 or over and at any one time, theremust only be one appointee acting on the person’s/customer’s behalf for all benefits administered by theDepartment for Work and Pensions.

An appointee can be an individual such as a relativeor friend or an organisation such as a local authorityor a firm of solicitors. An appointee would beresponsible for everything to do with benefits such as completing and signing forms or reportingchanges of circumstances.

An appointee is only able to manage benefits suchas state pension, pension credit, housing and counciltax benefit. An appointee is not able to manage bankaccounts or private pensions.

Deprivation of Liberty Safeguards (DoLS)On 1st April 2009, a new part of the Mental CapacityAct came into force—DoLS. These provide a lawfulmeans of depriving a person of 18 years or over, whohas a mental disorder and lacks capacity to makedecisions about how they are to be cared for, of theirliberty, if this is in the best interests of the person inorder to keep them safe. DoLS only applies to peoplein hospitals or care homes.

It is envisaged that most of the people who will beaffected by these provisions will be those who havelearning disabilities, dementia or brain damage.

For further information about the Mental CapacityAct, including DoLS, please visitwww.mentalcapacityact.wales.nhs.uk



Pages 58 & 59

6.6 Protection of Vulnerable Adultsfrom Abuse and Inappropriate Care For several years, since the implementation of theWelsh Assembly Government guidance document 'InSafe Hands (2000)' and the development of the'South Wales Policy and Procedures for theProtection of Vulnerable Adults from Abuse andInappropriate Care (2001)' Cardiff and Vale LocalAuthorities, in association with the NHS Trust, Policeand Care and Social Services Inspectorate for Walespartners have responded to cases of allegedabuse/inappropriate care in a systematic way.

The aim of the joint Policy is to ensure that anyabuse or inappropriate care when identified orreported is thoroughly investigated and plansdeveloped to assure the vulnerable adult's safety.Following a referral, partner agencies will worktogether to consider the nature of the allegedabuse/inappropriate care and decide the bestresponse to reduce or eliminate the risk of furthersignificant harm from occurring. As well asaddressing more serious cases of abuse via thecriminal justice system, the POVA Policy aims tosupport care-giving situations which are underpressure and where stress or exhaustion may play afactor in 'end of tether' abuse. It is also intended tobe used to help eliminate poor practice from withinservice settings, and to this end staff across theagencies are receiving training to become more'POVA aware'.

If you are concerned that a vulnerable adult is beingabused or subjected to inappropriate care, it isimportant that you act quickly in order that they canbe protected from further significant harm. You canmake a referral in several ways. Firstly, by accessinga VA1 referral form from the South Wales AdultProtection Forum website (www.swapforum.org) andsending this to your nearest Local Authority SocialServices Mental Health Services for Older PeopleCommunity Team (see entry) and/or by discussingyour concern with the lead officer within that teamwith POVA Designated Lead Manager responsibility.Next, the following personnel can be contacted foradvice and support and to discuss your referral.

Cardiff City Council Protection of Vulnerable Adults,Co-ordinators (Lynda Gallagher, Steve Hicks, Steve Bartley) Telephone: 029 2053 6436

Vale of Glamorgan Protection of Vulnerable, AdultsCo-ordinator Telephone: 01446 704740

Cardiff and Vale NHS Trust POVA Team, SimonO'Donovan and Denise Shanahan (Consultant Nursesfor Older Vulnerable Adults)/Simon Williams (NamedNurse Vulnerable Adult Protection), Telephone: 029 2033 6343/6342

Note: If you think a vulnerable adult is beingseriously harmed or that a criminal act has beencommitted you should call the Police withoutdelay. Telephone: 029 2022 2111.




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Understanding the Condition

Section7:Understanding the Condition

Mental Health Services for Older People providespecialised services for:

• Older people (65 years and over) experiencing mental health difficulties such as anxiety or depression. These people are sometimes referred to by another term; Service Users.

• Adults of any age with a dementia related illness—these people are also referred to as Service Users.

• Carers who support them—these people are the unpaid carers who are usually a partner, a relative or friend.

Depression affects proportionately more older peoplethan any other demographic group. This is becauseolder people face more events and situations thatmay trigger depression: physical illness anddebilitating physical conditions, loss andbereavement, poverty and isolation. Approximately15% of older people living in the community showsigns of mild to moderate depression but fortunatelysevere depression is less common at less than 5%.

Dementia currently affects over 700,000 people in theUK and this figure is expected to rise to one millionby 2025. Dementia affects one person in twenty overthe age of 65 and one person in five over the age of80. The number of people estimated with dementia inWales in 2007 was 36,532 (rising to 47,995 in 2025).

Dementia in people under the age of 65 iscomparatively rare but there are more than 18,000younger people with dementia in the UK. It isestimated that around 150 live in the Cardiff and Valeof Glamorgan area.

These two groups of mental health problems(dementia and other late life mental illness), whichcommonly affect older people, make up the definition‘Older People’s Mental Health'; a term which is oftenused to describe the special needs of this group ofvulnerable people in our society, and the serviceswhich are available to support them and their carers.

There is in fact a wide range of specialised servicesin the Cardiff and Vale of Glamorgan area providingsupport to older people with mental health problemsand their carers in the community. This publicationhas been designed with the express aim of informingthose caring for older people with mental healthproblems about the network of specialist serviceswhich exist in their locality to support them in theircare-giving role. Perhaps more importantly, however,it aims to help them gain access to appropriatesupport services to meet their needs and theindividual needs of the person being cared for.

7.1 What is Dementia?Dementia is a term used to describe the symptomsthat occur when the brain is affected by a specificillness, such as Alzheimer’s Disease, vasculardementia and many other rarer conditions.Symptoms of dementia include loss of memory,confusion and problems with speech andunderstanding. The word 'Dementia' simply means aloss or impairment of mental functioning and comesfrom two Latin words meaning 'away' and 'mind'.Alzheimer's Disease is by far the most common formof dementia, accounting for approximately 55% of allcases, and Vascular Dementia is the second most

These pages are designed to explain what is meant by “Older People’s Mental HealthServices”. They also provide some information about the main conditions which comeunder this term.


common form, accounting for about 20% of cases. A further 20% of cases are a mix of Alzheimer'sDisease and Vascular Dementia and the remaining10% are made up of the rarer dementias, includingDementia with Lewy Bodies, Fronto-temporalDementia/Pick's Disease and Huntington’s Disease.The main conditions are described in detail below.

ALZHEIMER’S DISEASE is a gradually worseningillness which increasingly affects the sufferer's brainand results in a gradual decline in their ability toremember, to learn, to think and to reason. The mostusual early symptoms are a gradual loss of short-term memory; increasing confusion andforgetfulness; communication difficulties; andproblems in performing everyday tasks, such asdriving, managing money, cooking meals, or evenwashing and dressing oneself. In the early stages ofthe illness the personality of the person withdementia may change and their behaviour maybecome unfamiliar or strange, sometimes beingdifficult for the carer to understand and manage.

Over a period of several years, as the person withdementia becomes more increasingly affected by theillness, their symptoms usually become more obviousand disabling and their confused and sometimesrisky behaviour may become far more difficult for thecarer to manage, especially if they are coping alone.At this stage behavioural problems, such aswandering, restlessness, or frustration and angryoutbursts may be experienced, often during the nightas well as in daylight hours. Similarly, physicalproblems may arise, such as difficulty with walkingand postural problems; problems with eating ordrinking and subsequent weight loss; or continenceproblems. Eventually the person with dementia maybecome so severely mentally impaired and physicallyfrail that they are totally dependent on others to meettheir needs.

In the later stages of the illness the multitude of care-giving problems may become so many that the lonecarer simply cannot continue to care for the personat home alone and specialist community support, orplacement within a specialist residential or hospitalcare setting may be required. It is the duty ofspecialist services to help support people withdementia and their carers in such a way as to enablethem to remain at home for as long as is possibleand desirable and, if and when care-giving becomestoo difficult, to facilitate a gradual and plannedadmission to the most appropriate continuing caresetting.

The symptoms of VASCULAR DEMENTIA may bealmost indistinguishable from those described above.However, unlike Alzheimer's Disease, VascularDementia usually has a more abrupt onset and aperson with dementia will have good and bad days,with a fluctuation in their level of confusion and self-care skills. Vascular Dementia is often caused by aseries of 'mini strokes’ (also known as infarcts),which destroy small areas of the brain, therebyproducing the symptoms of dementia. As furtherdamage occurs the level of confusion and memoryloss in the person with dementia will increase, oftensuddenly and dramatically. Similarly, their level ofself-care skills may deteriorate, sometimes overnight,and the carer has to adjust their coping and caringstrategies to compensate for their changing needs.Slight improvements in the condition of the personwith dementia may be apparent for a time, but sadlyonce the damage has taken place it is permanentand irreversible. Similarly, after each mini stroke thelevel of skills and abilities of the person withdementia, and the carer's roles and responsibilities,may level off and appear to reach a plateau for sometime before the next infarct occurs. Eventually overseveral years, through this process of 'stepwisedecline’, the person with dementia will reach a levelof moderate to severe dementia which isindistinguishable from advanced Alzheimer'sDisease.

7.2 Young Onset DementiaWhile dementia is generally regarded as an illness ofold age it can affect younger people in their 40s and50s and very rarely at an even younger age. Youngerpeople are more likely to suffer from one of the rarerforms of dementia and Alzheimer’s Disease is onlydiagnosed in one out of three cases of young onsetdementia. Hence it is important that they and theirfamilies receive an accurate diagnosis of theircondition.

While the younger person with dementia will havemany of the same problems as an older person theyand their families may also need specialist help andadvice. Younger people are more likely to be in workat the time of diagnosis and may have heavyfinancial commitments. They may have a youngfamily who are dependent on them. They will bephysically stronger than an older person withdementia and may be more disturbed by their illness.It is particularly distressing for a younger person toreceive a diagnosis of dementia and very difficult forthem and their family to come to terms with thediagnosis.

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Individual DifferencesIt should be noted that every person with dementia isan individual and will be affected in different ways.Some people with dementia may never experience allof the symptoms described above, whilst others mayexperience problems that have not been mentioned.Similarly, the pattern and course of the illness willvary from one person to the next, according to suchfactors as the type of dementing illness diagnosed,the age of onset of memory loss and confusion, andthe physical health of the person with dementia.Even though conditions, such as Alzheimer's Diseaseand Vascular Dementia cannot be 'cured', there ismuch that can be done to lessen the severity ofsymptoms and to improve the quality of life of thosesuffering from these illnesses. There is also muchthat can be done to improve the quality of life forcarers and this publication is intended to help explainwhich specialist services exist to support the carer ata practical, social and emotional level.

7.3 Other Late Life Mental IllnessIn addition to dementia a number of severe mentalhealth problems can occur in old age and peoplesuffering from them may need support and treatmentfrom specialist Mental Health Services for OlderPeople. These include:

PARAPHRENIA (or LATE ONSET PSYCHOSIS)—anillness occurring in old age which is characterised byfixed paranoid delusions, anxiety as a result of thesebeliefs and irrational or disruptive behaviour arisingfrom the individual's response to them. For examplea person may believe that their neighbours arelistening to them through the walls and plottingagainst them. They may try to prevent this by puttingtape round doors and windows and be extremelysuspicious of visitors. It affects approximately 1% ofolder people and is more likely to affect women andthose who live alone. It can be difficult to convincethe person that they have an illness but it is possibleto successfully treat this condition with medicationand support e.g. from a community psychiatricnurse.

DEPRESSIONUndoubtedly the kinds of things which we mightexpect to make us feel depressed do become morecommon as we grow older - having to stop work,probably less income, perhaps the start of arthritis orother physical problems. There are also theemotional losses—the death of a partner, or friends,or even of a dearly loved pet.

Feeling low or sad is not the only sign of depression.Other common symptoms include:

• A feeling of sadness, depression or being 'down' which is worse than normal sadness.

• A loss of interest in life—not being able to enjoy the things that usually give pleasure.

• A sense of fatigue or tiredness which is there evenwhen the person is not doing much—making even the simplest task a major effort.

• A loss of appetite and weight, or weight gain.

• An inner feeling of restlessness, making it hard to rest or relax properly.

• A feeling of wanting to avoid other people. If people are around they may become snappy or irritable.

• Poor sleep. This may include waking early in the morning (at least an hour or two earlier than usual) and then being unable to get back to sleep again.

• Loss of self confidence—feeling useless or a burden to others.

• Feelings of being bad or guilty—dwelling on thingsfrom the past and possibly getting things out of proportion, perhaps even wondering whether God is punishing them.

• Thoughts of suicide—most people with severe depression feel at some point like ending it all.

These feelings should be taken seriously. They meanthat help is definitely needed. Sometimes theybecome so strong that a person will work out waysof harming themselves, and even make preparations.This is a sign that help is urgently required.

Depression can make a person feel terribly worriedand anxious. Some people have always worried morethan others but, if this is unusual in the person youlive with or support , then it may be a sign ofdepression.

In fact, worry and agitation may be so great that aperson can feel and appear quite confused becausethey don't seem to be able to remember things. Thisitself can cause further anxiety because many olderpeople worry about becoming 'senile'. Justoccasionally, severe depression can be mistaken fordementia. Very depressed people are only too awareof not being able to remember things, whereaspeople with dementia usually are not. Dementia anddepression are completely separate conditions, sodon't put off seeking help. Having said this, peoplewho do have dementia are quite likely to getdepressed and treating this can be very helpful.



ACUTE CONFUSIONAL STATES The reason that these conditions are included is thatin their most severe forms the symptoms of memoryloss and confusion may mimic dementia and it canbe very difficult to identify which illness the person isactually suffering from. Acute confusional states arecharacterised by severe confusion, disorientation anda fluctuating level of awareness. This is usuallycaused by a medical condition, such as a chestinfection, which has a sudden onset and an acuteclinical presentation.

A significant number, perhaps one third of thoseadmitted to hospital wards, suffer from an AcuteConfusional State to some degree. This stresses theneed for a comprehensive assessment of theindividual's medical, psychological, emotional andsocial problems, which needs to take place in orderto arrive at an accurate diagnosis.

People suffering from these conditions can berestored to independent functioning with animproved quality of life, and their confusion andmemory loss can be reversed. If a person withdementia suddenly becomes much more confused itshould not be assumed that this is merely aworsening of the dementia. It may be that they aresuffering from a underlying condition such as a urineor chest infection. Once this is discovered andtreated appropriately they can become much better.

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Caring for a Person with Dementia

Section8:Caring for a Person with Dementia

The vast majority of care for people with dementiatakes place in the community. It is estimated that asmany as 80% of people with dementia are living intheir own home or the home of a close relative andonly 20% are cared for in nursing or residential caresettings. By definition, those living with a person withdementia become the primary caregiver/s and theseare most often wife or daughter carers. Caringrelatives provide an extremely valuable service andas the responsibility of care giving usually falls uponone person's shoulders, most carers experiencesome form of personal, emotional and financialhardship. Yet the strain that carers are under andtheir invaluable contribution to care may not be fullyacknowledged. Most carers cope with little or nosupport from statutory services and the burden ofcare giving gradually builds up as their relative'scondition progressively worsens over time. Carersrealise that no matter how competent or committedthey are, caring is likely to become increasingly moredifficult. They worry for the future and how they will cope.

Some carers do not recognise themselves as being a'carer'; their caring role and their relative's illnesshaving developed so gradually and insidiously. Manyhave not been identified by services that couldprovide them with practical help and support andsome have received no specialist diagnosis for theillness from which their relative is suffering or aformal assessment of their needs. For these reasonsdementia has been referred to as an 'icebergcondition', that is to say only the most severelyaffected families are known to services. The phrase'The Silent Epidemic' has been coined to describe

the hidden extent of the illness in our society(estimated to affect 750,000 people in the UnitedKingdom) and its devastating impact on people withdementia and their carers.

A great deal of support is needed to keep a personwith dementia at home in the community. Manycarers suffer from severe stress and strain as a resultof caring 24 hours a day, 7 days a week over manymonths or even years. This endless caring has beenreferred to by carers themselves as 'The 36 HourDay'; there never being enough hours in the day todo all the work that needs to be done and a feelingthat one day melts into another. Many carers have tocope with problems which arise during the night,such as wandering, incontinence or severe insomnia,as well as having to provide constant care andsupervision throughout the day. The physical andpsychological health of carers may be adverselyaffected by such endurance, for example, a backinjury may be sustained by lifting a heavy person intothe bath, severe insomnia or gastric complaints maydevelop and depressive symptoms may result.

Carers have to make many psychologicaladjustments throughout their years of care giving,such as initially having to come to terms with thediagnosis and prognosis of the person’s illness andwhat the future holds for them as individuals.

A lot can be involved in caring for someone with a dementia. These pages aim toprovide some information and practical suggestions to aid carers with day-to-daycare-giving.


They also have to come to terms with the constantadaptations which they have to make as newproblems and situations arise, as well as the losseswhich are incurred as the condition graduallyworsens, for example, when a husband or wife failsto recognise them for the first time or develops acontinence problem.

Some carers continue to receive the support offamily and friends, but for others caring can be anextremely socially isolating experience. Friends andrelatives may stop calling due to embarrassment atthe behaviour of the person with dementia, or carersmight ask friends not to call or socially isolatethemselves because they feel their situation toodistressing to share with others. Some carers mightsimply become so restricted in their own home that itbecomes impossible for them to continue withoutside interests or social contacts. For othersleaving their relative safely alone in the home is nolonger an option, as they would be at risk of falling,wandering outside or even leaving gas cookers on unlit.

However, caring for someone with dementia can alsobe a very rewarding experience. For most carers thewish to care grows out of close ties of marriage andblood, as well as out of long established patterns oflife reinforced by bonds of love and affection, oralternatively, out of a sense of duty or obligation. As the illness of the cared for person has persistedfor many years rather than months, so the carer'sskills in care-giving gradually develop and they makeconsiderable changes in their lives. Despite thetremendous emotional, psychological, physical andsocial weight of caring, most carers derive a greatdeal of satisfaction from their role and express a wishto continue caring for their relative at home for aslong as possible and up to their death. However, theycannot be expected to do so without appropriateforms of practical, social, emotional andpsychological support. Indeed, without it the care-giving situation can break down and a crisisadmission to permanent care result, with negativeconsequences for both the person with dementia and their carer.

8.1 Practical Guidelines for Caring forthe Person with DementiaA key to caring for someone with dementia isunderstanding that many or all of their problems arisefrom the illness from which they are suffering. Theirloss of memory and skills and the behaviouralproblems they may experience are as a direct result

of damage to their brain caused by the dementia.There is no control over the illness and thereforecarers should be advised not to take difficultbehaviour personally or apportion blame on theperson with dementia because they feel they are 'nottrying hard enough'.

The following practical guidelines may be of somevalue in helping carers better understand and copewith day-to-day problems in care-giving and inregaining some control over their situation.

1. Keep Things Normal A diagnosis of dementia does not mean that youmust suddenly start treating your relative like aninvalid. In fact, you should try and make a point ofkeeping things as normal as possible for as long aspossible. Carry on any pursuits which you have bothfound enjoyable, such as going to the pub, theatre orcinema, listening to music and singing or dancing,unless or until it stops being a pleasure. Introducenew activities if they seem appropriate - people withdementia often enjoy simple arts and crafts activitiesand derive great pleasure from the company of smallchildren or animals.

2. Retain The Person's Independence There are two major reasons for doing all you can tomaintain the person’s independence and self-careskills for as long as possible. Firstly, it helps them toretain some sense of dignity and self-respect, andmay avoid frustration being brought on by feelinghelpless. Secondly, it makes less work for you—themore they can do for themselves, the less you haveto do for them.

Encourage the person to carry on with things theycan manage. When something becomes too difficult,don't give up on it completely—perhaps it could beachieved if it were broken down into smaller steps.But be sure to recognise when something is reallybeyond the capability of the person you care for. Try not to highlight their loss of competence andindependence and avoid placing them in a situationwhere they will fail. Instead give them simpler taskswhich you know they can complete successfully.Praise them (but not in a way that could be perceivedas being patronising) when they complete a tasksuccessfully or for any help they can give you. In thisway they will have a sense of achievement and their self-esteem will be maintained.

Cut down on what the person does independentlyslowly and reluctantly, because once self-care skillsare not practised they are quickly lost. Brace yourselfand start to gently take over when you see that their

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ability to achieve tasks has been lost and their lossof competence is distressing them.

3. Avoid Confrontation There will be many occasions when you and theperson you care for will have disagreements. Youmight think it's time he/she changed his/her dirtyclothes, and he/she doesn't. He/she believessomeone's stolen their money from theirwallet/purse, you know they haven't. He/she insistsit's perfectly all right to go out shopping dressed intheir pyjamas, you'd rather not be with them whenthey did!

In fact, arguments won't usually get you very far.They generally lead only to frustration and upset forboth of you. It's better to avoid confrontationwhenever you can. Try not to contradict the personwith dementia if they say strange or silly things.Instead, try to divert them from their confusedbehaviour onto something more interesting orconstructive, like a favourite song or photograph.Talking about the past at times of upset can bereassuring when the present makes little sense toyou. If this fails, go along with the person's behaviouruntil diversion is possible. For example, go out for awalk with them when they insist on wanderingoutside and while walking with them talk abouthappier times or how nice a cup of tea would beafter such a long walk! If all else fails and theperson's behaviour is upsetting both of you thenwalk out of the room, having first ensured theperson's safety, and have a break, a cup of tea, oreven count to ten. This could help diffuse thesituation and after a short time the person may wellhave forgotten what all the fuss was about.

4. Avoid Crises There will be occasions when the person you care forseems suddenly to get more confused, to behaveparticularly badly or to cry for no reason and theymay be unable to explain why. This may be causedby what they perceive as a crisis in their life—anevent or sudden change that seems normal enoughto those unaffected by their illness, but alarming tosomeone who is confused.

A crisis for the person with dementia might be havingto hurry to get somewhere on time; meeting toomany people at once, even if they are people familiarto them; or going into new and unfamiliarsurroundings.

Some of these crises may be avoidable. Try alwaysto leave plenty of time to prepare for an outing, or toget a task done. Make sure that only one or twofriends or relatives visit at once. Accompany the

person to new places. If you take them away onholiday, try to go somewhere where both yourproblems and those of the person you care for willbe understood. Above all else, try to stay calmyourself.

There will be times, though, when crises cannot beavoided, for example, when you are to have a breakfor the first time and an unknown sitter comes intothe house, or when the person is to go to a new daycentre. On these occasions simply try to reduce thedisorientation the person is likely to feel byintroducing a new person in slow stages and withyou present, or by using a family friend or neighbouras a sitter. The introduction to a day centre orhospital should also be made gradually.

Don't avoid making any changes at all or stop yoursocial life just to avoid crises for the person you carefor. Sometimes they are inevitable and may have apositive outcome for him/her—or you—in the long run.

5. Establish RoutinesRoutines are vital in caring for someone withdementia. Doing the same thing at the same timeevery day helps the person to remember and to feelsafe and secure. If life is predictable and familiar,there is less chance of increasing their confusion.Maintaining a routine therefore helps you in the taskof care giving.

6. Make Things SimplerA person who is already confused will find takingstraightforward decisions, or carrying out relativelysimple tasks, over-complicated and difficult. Taking abath, for example, involves many separate actions,from putting in the plug to turning on the taps andobtaining the right temperature, getting undressed,and so on.

Try to simplify things: don't offer too many choices(two is probably enough); break tasks down intoshort, simple sections; if a task becomes too difficultask them to do only part of it, doing the more difficultbits yourself; and try to consult the person and offerthem choices, even if they don't fully understand. Allthese techniques can help preserve the person'sself-esteem and feelings of self-worth which may beadversely affected if they feel they are losing controlover their life.

Make things simple for yourself too. Don't fight lotsof battles at once, but try and solve problems one ata time. That way you stand a better chance ofsuccess.



7. Maintain a Sense of HumourDementia is a tragic illness. There may neverthelessbe times when you can see the lighter side of things,and it is important for your own mental health thatyou maintain the ability to laugh. The person youcare for may still be able to enjoy a good joke or afunny situation and it will do you both good to laughtogether.

Of course, laughing with someone is quite differentfrom laughing at them, which should be avoided atall costs.

8. Make Things Safer The risk of an accident increases in the home of aperson with dementia and you should take great careto make the home as safe as possible.

Loss of physical co-ordination increases thelikelihood of falls, so you should check the home fordanger zones like a loose banister rail, slippery floormats, awkwardly placed furniture, or carpets whichhave not been securely nailed down. You may needto have an extra stair rail fitted, along with hand railsnear the bath and toilet.

Loss of memory and thinking ability can give rise torisks from a number of everyday activities. Theperson may turn on the gas fire but forget to light it;they may drop lighted matches into a wastepaperbasket; they may scald themselves on a boilingkettle. Some of the solutions are obvious; switch offthe gas at the mains when you go out, don't leavematches around, hide kettle flexes. The list is a longone, and largely a matter of common sense. Youshould review the home for all potential accidentsand take action to avoid them.

9. Maintain General Fitness and HealthThe general state of the person’s health will affecttheir overall condition. If good general health ismaintained it will help to preserve existing physicaland mental abilities for as long as possible as well asencouraging independence and sustaining morale.The person needs someone, like their GP, to regularlycheck on their condition, a balanced diet andappropriate physical exercise.

Keeping a check on the condition: As the maincarer you are the best person to monitor anychanges in the cared for persons condition. A personwith dementia will still suffer from the common colds,coughs and minor complaints that make everyoneuncomfortable. They are also more prone to certainailments, such as chest infections, and more likely tosuffer falls. A person who is unable to move easilyand spends much time in one position may developpressure sores or hypothermia in cold weather

(especially if they live alone and are not closelysupervised). All these things need to be carefullywatched for as the person may not be able to explainto you what is wrong and may suffer pain ordiscomfort needlessly. Sometimes you may be ableto give a remedy yourself, but do remember thateven everyday medication such as aspirin mayworsen their symptoms unless given in small doses.A check with your doctor is advisable if thesymptoms are persistent, unusual, worsen suddenly,or if you are unsure what to do.

A district nurse, social worker, or communitypsychiatric nurse who makes regular home visits canalso look out for any changes and reassess theperson's needs. They can refer them to specialists or services for particular problems, such as falls. A doctor can prescribe medicines which may giverelief from problems such as sleeplessness andwandering at night, or the sudden onset ofincontinence which may result from a bladderinfection.

Diet: As the illness progresses there may beproblems with the practical side of eating and tastesfor food may alter. But it is important to try andinclude all the ingredients of a balanced dietespecially as the symptoms of dementia can beworsened by an inadequate diet. Try to providesomething the person with dementia likes eatingfrom each of these food groups every day:

• Meat, fish, eggs, pulses (lentils, beans, etc.).

• Fruit and vegetables.

• Cereals and bread.

• Dairy produce, milk, cheese, etc.

Make sure the person drinks enough liquid to preventthem becoming dehydrated or constipated. Ifconstipation becomes a problem an increase in highfibre foods, such as wholemeal bread, cereals, fruitand vegetables, may help.

Exercise: Physical activity can be pleasurable as wellas helping to preserve existing abilities. The kind ofexercise depends on the person's condition andwhat they like doing, such as walking, dancing,gardening, swimming or playing bowls—at least untilthese things become impractical. As the illnessprogresses a gentle stroll in a familiar street or thepark may be more suitable and just as enjoyable.

10. Keep Channels of Communication OpenAs the person's dementia progresses there will beincreasing problems of communication betweenthem and others. There will be difficulties for theperson in expressing him/herself and for carers

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explaining things and making him/herself understood.This will affect daily activities and the expression ofthoughts and feelings.

Talking often becomes difficult for a person withdementia. They may use the wrong words, forgetwords completely, endlessly repeat words or phrasesand lose the thread of the conversation. This can bedistressing for both the person and carer.

There are several things which can be done to helpkeep channels of communication open. At a practicallevel it is extremely important to check that theperson’s senses are not additionally impaired by, forexample, a hearing aid that does not work properly,dentures that are too loose, or glasses that are nolonger of the correct prescription.

In conversation you should remember to speakclearly, simply and slowly, and to talk about only onetopic at a time. Allow extra time for the person toreply. You may need to repeat things several times,find a simpler way of saying something, or guess thesense of what they are saying. If the person isconfused, remind them of basic information gently,perhaps by using a picture or object. Try not tocontradict or embarrass the person by correctingthem bluntly.

And of course speech is not the only way ofcommunicating. Body language—the way we look ata person, how close we move towards them, how wetouch them—can be more important than wordsalone. In the later stages of dementia looking andtouching may be the main way of expressingaffection and care for the person, and the bodylanguage of the person with dementia gives youclues as to what they mean and how they are feelingas well.

11. Use of Memory Aids In the early stages of dementia the person may behelped by using memory aids. These are thingswhich may help to jog the memory, avoid confusionand disorientation, and keep things as normal aspossible.

Here are some things that carers have found useful:

• Regularly remind the person of the time, day and where they are.

• Keep a clock with a large clear dial on view.

• Keep a calendar that can be changed by the day, month and year.

• Label the doors of rooms, such as the bedroom and toilet, with words, pictures and colours.

• Keep photos of familiar people and the family on view.

• Leave their personal possessions where they can easily find them.

• Keep furniture in the same place.

• Keep checklists of things to do that day, or lists of expected visitors etc., which can be ticked off.

• Set things out in the order in which they have to be done.

• Leave out things required, for example, one day's medication supply.

• Leave a simple clear note with an address if you are going out.

• Make a life story book together with details and pictures of the person’s life to date, family etc. to use to help reminisce.

• Don't forget textures, tastes and smells can also evoke memories.

8.2 Dealing with Common Problems1. DressingPeople with dementia may not remember whichclothes should be put on, in which order they shouldbe put on, or how to actually put them on. They mayend up wearing several skirts, and no underwear, orwith things on back-to-front or done up incorrectly.They may also have difficulty doing up buckles,laces, bras and so on.

An additional problem is that the person you care formay not recognise the need to change their clothes,for example, when they are dirty or if they are goingto bed. They may also choose to wear inappropriateclothing—going out in the daytime in their night-wear,for example.

Possible solutions: Try laying out clothes in theorder they have to be put on. Avoid clothes withcomplicated openings and fastenings. Replacebuttons with zips and Velcro, buckles and belts withelastic, lace-up shoes with slip-ons and men's 'Y'front pants with boxer shorts. Choose women's braswith a front opening.

You may need more persuasive tactics to overcomethe last two problems. The person you care for mayresent interference. Don't argue, try to encourageinstead. Set out the clean clothes saying "These arethe clothes you chose to put on", or "That dressreally suits you”. You may have to become tolerant oftheir preferences. One carer's father frequently worefour pairs of trousers at one time, another's motherliked to go to the day centre in her dressing gown.There was no harm done by either!



2. Washing and Bathing People with dementia may forget to wash and nolonger recognise the need. They may have forgottenwhat to do, or be unable to wash certain parts oftheir body because of physical impairment. Some willbe unable to climb in or out of the bath safely ormanipulate taps. They may be embarrassed byhelpers seeing parts of their body usually keptprivate, and may refuse to wash at all. Theseproblems are increased if they have continenceproblems and need to wash more frequently.

Possible solutions: Try to establish and maintain aroutine for washing. You will need a good deal oftact. If the person is reluctant to wash you canemphasise the more pleasant aspects, the comfort ofwarm water, perfumed soaps and so on. You mayhave to tell them step-by-step what to do, wash withthem, or clean your own teeth to demonstrate. Youmay have to help or supervise them because ofphysical difficulty and risk of accident or injury. Therewill be difficulties for the carer too if the person islarge or heavy and you need to lift them. You may beable to get practical help from a Home Care Workerand aids such as rails and a bath seat or hoist whichmay alleviate some of these problems. Incontinencecan be very difficult to manage, especially ifembarrassment leads to concealment. And of courseit's a problem for the carer who may be just asuncomfortable. A matter-of-fact approach mightalleviate distress or embarrassment: "Your trousersare wet, and you'll get sore if you don't wash, pleaselet me help you". However, telling them off orshowing that you are upset won't help.

3. Going to the ToiletPeople with dementia may forget to go to the toiletleading to inappropriate voiding and constipation.They may forget where the toilet is, even in their ownhome. There may be problems undoing their clothingin time. At night they may lose their way in the darkor mistake some other object, such as a waste-bin,for the toilet.

Possible solutions: At regular intervals, eitherremind the person you care for to go to the toilet ortake them to it. Label the door, or paint it brightly.Make sure clothing can be easily removed. Takethem before they go to bed. Leave on a lamp with alow wattage bulb or night light, or stick luminoustape on the wall as a guide.

A pot by the side of the bed may help—this used tobe common practice for most people when lavatorieswere outdoors and many older people may becomfortable using such an aid.

4. Cooking The problems are most severe if the person withdementia lives alone. The ability to cook even simplemeals may be lost. Just buying food and keeping itfresh may be beyond their capacity. They may eatfood that has gone off and not recognise it tastesbad. The gas cooker may be switched on and leftunlit, pots may be left to burn. Poor physical co-ordination can lead to burns and scalds or cuts fromutensils. The combination of these problems maylead to malnourishment in many people withdementia who live alone.

For the person with dementia living with others, theproblems are diminished if the carer cooks forthem—the problem in this situation may be for thecarer who is unused to buying or cooking food, forexample a husband carer who has to learn how totake over these responsibilities from his increasinglyconfused wife.

Possible solutions: There are safety devices whichcan be fitted to cookers to prevent some of theseproblems. Invest in an electric kettle that switchesitself off. Remove sharp knives and other potentiallydangerous utensils. Try to arrange for the meals-on-wheels service to call, but check to see that theperson knows how to open the container. You mayneed to put the food out on a plate for them if theydon't understand what the carton is for. Leave foodthat doesn’t need to be cooked e.g. sandwiches,cold meat, biscuits in a place that the person willeasily see. You may need to visit daily to help orsupervise.

5. EatingPeople with dementia may forget whether or not theyhave eaten. Some don't want to eat and claim theyhave just done so, others want to start on the nextmeal as soon as they have finished the previous one.They may develop strong dislikes of certain foodsand cravings for others. Some don't know how toeat. They may forget how to use cutlery and begenerally very messy. They may play with their food,not realising it is to go in their mouth. They may beconfused by different foods on one plate. Othershave physical problems, they can't chew properlyand have difficulty swallowing, which could lead tochoking. Some forget to drink and may becomedehydrated.

Possible solutions: Have regular times for eating,and eat with the person you care for. If the personoften wants to start another meal soon after the lastone, keep some washing up in the sink to show theremains of the last meal. If they will eat only certainfoods, you may have to ask your doctor about diet

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and vitamin supplements. Don't worry about tablemanners—spoons are easier than knives and forks,and fingers came first of all! Use plastic table clothsand place mats so any mess can be easily cleaned up.

You may have to remind them how to eat by talkingthem through each stage, or show them by eatingsomething yourself. Sometimes spoon-feeding maybe necessary. Try to keep food simple. Cut it upsmall or keep it to one texture—soft, thick foods areeasier to swallow. A mixture of liquid and solid at thesame time may lead them to swallow instead ofchewing and could result in choking. If chokingoccurs fluid thickeners may be required; your GPshould refer the person with dementia to a speechand language therapist for assessment. Check thatdentures fit properly and are kept clean.

Make sure that the person has several drinks a day(about a litre and a half a day is about right) and thatthe drinks are not too hot—he/she may have losthis/her judgement and could scald him/herself. If theperson forgets to drink they could easily becomedehydrated, which could lead to constipation, abladder infection or a sudden worsening of theirconfusion.

6. Going Out Alone and ShoppingThe most worrying problem for many carers is thesafety of the person they care for. Traffic presents athreat on even the quietest roads and crowded, busystreets or shopping centres can confuse and alarm.The person with dementia may not recognise evenfamiliar places and become lost and frightened.Other people are not always helpful and mayinterpret confused behaviour as drunkenness.

If they are shopping there are the additional problemsof remembering what they went out to buy andhandling money.

Possible solutions: Many carers are rightly reluctantto discourage the person with dementia from goingout alone as it is often the last thing that they can doon their own. Encourage the person to walk in a parkor other safe area away from traffic and crowds. Ifthis is not possible you may have to accompanythem—perhaps take them part of the way to a pointwhere they cannot go wrong, or meet them on thereturn journey. One carer relied on a well-trained andtrusted dog to help her husband cross the road andbring him home safely.

Persuade them to carry some form of identification—an identity bracelet or card explaining that they mightbecome confused can be useful. Don't forget to puttheir name and a contact telephone number on it for

additional reassurance. A more simple option mightbe to sew a name tape with this information on it intothe pocket of their favourite coat.

If the person is shopping, give them a clear note andonly the amount of money they will need. They willbe able to buy only one or two straightforward items.If they need clothes you will have to go with them.Don’t be embarrassed to explain the problem toshop assistants who are usually most helpful oncethey understand.

7. Driving It can be dangerous for people with dementia todrive, even in the early stages of the illness. Theybecome a hazard on the roads because theirjudgement is impaired and their reactions are slowed.Many road traffic accidents are caused by driverswho have dementia and many members of the publicas well as the actual drivers and passengers areseriously hurt each year as a result.

Possible solutions: Once you feel that the personwith dementia should stop driving, broach thesubject with them gently. Some may be pleased tobe rid of the responsibility driving brings. Others,who resent their loss of independence, may findgiving up particularly hard. If gentle persuasiondoesn't dissuade them from driving, you will have totake firmer action. In the first instance, offer to driveyourself (if you can), or suggest using a taxi or publictransport. If needs be, hide the car keys orimmobilise the car (go to a garage to discuss theeasiest way to do this). In the longer term, it may bebest to use an authority, such as your doctor, asolicitor, or police officer, to persuade the person youcare for of the danger they put themselves andothers in if they continue driving. Remember; manyinsurance companies require a medical certificate offitness before insuring older drivers and a driver whohas an accident who has not declared his/her illnesswill not be covered. Sometimes having their licencerevoked by the DVLA is the only way that a personwith dementia will be stopped from driving. Having athird party i.e. a professional make the decision toinform the DVLA takes the pressure off the carer andgives the person with dementia someone outside thecare-giving situation to blame. An assessment offactors that affect a person’s driving ability can beundertaken by the Clinical Psychologist based withthe Community Mental Health Team for Older Peopleor by the Driving Assessment Centre based atRookwood Hospital. It can be difficult for the carer toaccept that the person can no longer drive and tohave to give up the convenience of having a car.



However, this needs to be balanced against theterrible consequences that an accident could bring.

8. Alcohol and Cigarettes If the person with dementia is in the habit of drinkingalcohol in moderation, there is no reason why thisshould be stopped. Having a drink may be one oftheir remaining pleasures, and something you canenjoy together. You should take care, however, thatalcohol is not left out where the person can helpthemselves. One carer admitted to having to replacethe sherry with ginger ale to limit her husband'salcohol intake. If they are on medication, rememberto check with the doctor or pharmacist that the drugsmix safely with alcohol.

The use of cigarettes represents a greater danger.People with dementia are not safe with matches, andthey may smoke in bed, leave lighted cigarettes onthe edge of armchairs, or throw them away inwastepaper baskets.

Possible solutions: If the person you care for reallyneeds to smoke, it should only be under strictsupervision. Far better is to dissuade them fromsmoking. If persuasion fails, choose a moment whenthey are otherwise occupied to remove theircigarettes. It may be reassuring to know that manypeople with dementia forget to smoke and so don'tmiss the habit once it is broken. Others do well withnicotine replacement therapy, which can be graduallyreduced—talk to your GP if this seems like a good idea.

9. Wandering Wandering is a common and difficult problem to dealwith. People with dementia may wander aimlessly oranxiously around the home, or wander around theneighbourhood having slipped secretly out of thehouse. They may wander long distances to oldhaunts and get lost. You will be worried about theirsafety and their own bewilderment or fear, especiallyif they cannot find their way home or cross the roadsafely.

Possible solutions: If you can work out a reason forthe wandering you may find a solution. Sometimeswandering results from general restlessness andboredom and is a sign that the person needs morestimulation or physical activity. They may besearching for someone or things they think they havelost. Keeping photographs or personal possessionson view may help. Often the person feels insecureand may need both the emotional reassurance thatyou care and the concrete reassurance of thingsbeing kept in the same places and routinesmaintained. Wandering frequently starts after a visit

to a strange place—after a holiday, for example—orafter a change of habit, such as starting at a daycentre. In which case it may help if you go with thema few times until the change becomes more familiar.Moving home can be very distressing for a personwith dementia and should be avoided if at allpossible.

If you can find no apparent reason for the person'swandering behaviour, then you may have to preventthem wandering if you feel they will be at risk. Youmay be able to fix up an alarm that will alert you ifthe person goes beyond a certain point e.g. opensthe back door or you may need to install a ‘deadlock’ on a street door which needs a key to open itfrom the inside.

An identity bracelet worn by the person giving detailsof how you can be contacted is an additional safetymeasure. If they do still manage to wander off,contact the police who will then keep a look out forhim/her. Keep some recently taken photographs thatcan be used in case they do go missing.

10. Night DisturbanceMany people with dementia are restless at night anddisturb the whole household by wandering andmaking a noise. This can be one of the most wearingproblems for carers. Sometimes the person's sleeppattern is reversed and they are awake at night—thinking it is day—and asleep for long periods duringthe day.

Possible solutions: Again, if you can find a reasonfor this problem you might be able to alleviate it.Some of the more obvious reasons may be that theperson:

• Is looking for the toilet.

• Sleeps too much in the daytime.

• Goes to bed too early.

• Needs less sleep.

• Wakes up and is confused or frightened.

• Thinks it is daytime.

Make sure that they have been to the toilet beforegoing to bed. Try to discourage long sleeps duringthe day, perhaps by increasing physical activity. Tryto make them as comfortable as possible. A bedsidelamp with a low-wattage bulb left on may help if theperson wakes up frightened. Sometimes talkinggently to the person will reassure them and sendthem back to sleep. If they think it's daytime or theythink they need to get up for some reason you mighthave to go along with them as arguing could lead toupset. One carer spoke of her husband who regularlywoke at night wanting to go to the shops. She

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always said, "All right then, let's go", walked himround the room and back to bed by which time he'dforgotten where he was going.

If nothing seems to work and the disruption to yourown sleep makes you feel unable to cope, you willhave to ask your doctor about night medication for ashort time until a normal sleep pattern is re-established.

11. Repetitive Questioning and Actions This problem can be extremely irritating for carers!Usually the person is unaware of what they aredoing, although their behaviour may reflectunderlying anxiety or insecurity. Repetition may alsoarise from frustration or boredom and can be a hard-to-break habit.

Possible solutions: Try to remember that thisproblem usually stems from the person's memoryimpairment—they are forgetting what was said ordone a few minutes earlier—and is not usually adeliberate act. It could be that the person's needshave remained unmet in some way, for example theymay still be hungry or need to go to the toilet.There's no point in getting angry or saying, "I’ve justtold you ten times”. If possible try to identify theperson's underlying needs and meet them. If thetrigger was removed, like giving them some moneywhen they ask for it (their need being financialsecurity), then the repetitive behaviour might stop.Alternatively, try to distract them by talking aboutsomething else or giving them a different activity, likelistening to music or washing the dishes. Sometimeswriting down the answer helps. Reassuring them ofyour concern may reduce insecurity. If you findyourself getting very stressed take a short break fromthe situation in another room or the garden.

12. Clinging Behaviour: Some people with dementia become reluctant to lettheir carer out of their sight and follow them fromroom to room. This can be very distressing for you,as it means you're allowed no privacy, sometimeseven to go to the toilet.

The person probably behaves like this becausethey're feeling insecure in some way, and the care-giver represents security. Perhaps when they see youleave the room, they forget that you will come backand get frightened.

Possible solutions: While you're gone, give themsome simple task to do or use the clock to point outwhen you'll return. Reassure them that you'll be backwhen the task is finished or when the clock reachesa certain time.

If this is a regular problem for you, it is important thatyou use sitters or find some other way of getting abreak.

13. Losing Things and Accusation of Theft Many people with dementia really do forget wherethey have put things, others deliberately hide thingsand then forget. In either case they may accuse youor someone else of stealing the missing items. Theitems lost may seem unimportant or trivial to you, butto the person with dementia they may hold somespecial value or meaning.

Possible solutions: Try not to take the accusationstoo seriously. Don't deny the charge and get into anargument—it won't be possible to reason withhim/her and he/she will become more upset. Try tofind out if they have a regular hiding place, such asunder the mattress or in an old shoe. Keepreplacements of essential items, such as keys orglasses. Put away or lock up valuables, money ordangerous things. Get into the habit of checkingrubbish bins before emptying them. Make sure thatother people who help to care for the person areaware of the problem.

14. IncontinenceMany people with dementia may be occasionallyincontinent and wet the bed. Regular bladderincontinence and bowel incontinence is less usual.But even the occasional accident can be difficult todeal with. It is embarrassing and degrading for theperson and distasteful for the carer who has to cleanup after them.

If incontinence becomes frequent or developssuddenly always check with your doctor, as therecould be an underlying medical reason.

There could be several reasons for incontinence:

• The person forgets to go.

• They can't get to the toilet in time.

• They can't undo their clothing easily.

• They can't find their way at night.

• They have an attack of diarrhoea.

• They may be suffering from a bladder infection.

Possible Solutions: • Take the person to the toilet regularly.

• If the toilet is upstairs or some distance from where they spend most of their time try to get a commode.

• Clothing can be adapted by using Velcro instead of zips. Men's 'Y' front pants can be replaced by boxer shorts. Your district nurse can tell you aboutthe special clothing that is available. If you're not



already in touch with your district nurse ask your doctor to put you in touch with her.

• Provide a bottle or pot for night-time use.

• Use luminous tapes and plug in lights to mark the route to the toilet.

• Always take them to the toilet before they go to bed and if it prevents a wet bed take them during the night too.

• Keep a check on their diet. If they are not eating enough roughage they may develop constipation which can lead to a blocked bowel and leaking diarrhoea. Increase vegetables, fruits and whole-grain cereals.

• Try to reduce embarrassment by adopting a matter-of-fact approach, directing their attention tothe task of cleaning and washing and avoiding anyrecriminations.

• To protect your furniture use washable covers or dustbin liners. Beds can be protected by using a plastic sheet between a draw sheet (a sheet foldedin half and tucked in across the bed) or a plastic mattress cover (available from your district nurse/chemist).

• Special pads and pants are available from chemistshops or through Health Trusts (ask your district nurse).

• If the person experiences pain on passing water, or if their urine is foul smelling or cloudy take a sample to the doctor for testing to rule out a bladder infection. If treated with antibiotics it mightreduce the frequency that the person needs to urinate and stop their incontinence.

• If diarrhoea is present, ask your doctor to check for constipation as it might be overflow from an impacted bowel. Once this is cleared with an enema then the diarrhoea may stop and the urinary incontinence might also improve.

15. Delusions and HallucinationsDelusions (fixed false beliefs not open to reason) areideas that are imaginary, but that seem very real tothe person experiencing them. Someone sufferingfrom delusions may believe that there are somepeople who want to harm them, or that objectswhich are simply mislaid or hidden may have beenstolen, even by members of the family.

Someone suffering hallucinations (abnormal senseswith no external stimulus) sees or hears things thataren't actually there. They may see strange peoplesitting in the room with them, or hear dead relativestalking to them.

Possible solutions: Both delusions andhallucinations are imaginary and not real, but they arevery real to the person experiencing them and cangive rise to genuine feelings of anxiety or panic. Theyshould therefore be taken seriously.

When the person is experiencing a delusion orhallucination don’t argue with them or tell them theyare mistaken. Remember they are outside theperson's control so becoming angry or impatient withthem will not help. If the delusion concerns a missingobject, for example, try to find it, rather than deny ithas been stolen. If the person is distressed by ahallucination, explain that you understand that theyare seeing or hearing things and the feelings thesecause, but also that other people cannot see or hearwhat frightens them. Try to comfort them, perhaps byputting an arm round them or holding their hand, andtry to distract their attention onto something realnearby.

If the person you are caring for begins to suffer fromdelusions or hallucinations you should see yourdoctor. It could be that the side effects of medicationare causing the problem, or the problem itself mightrespond to medication.

16. Sexual RelationshipsThe sexual relationship is very private and personaland not something that many carers can talk abouteasily. While dementia does not necessarily affectsexual relationships, the person’s attitude tolovemaking may alter. They may not respond toaffectionate gestures that you make or they may loseinterest altogether. They may simply forget about it.

You might find that you lose interest yourselfbecause of the stresses and tiredness brought on bycaring for the person with dementia. You may alsofind it difficult to make love with a person whosepersonality has changed so much.

Occasionally, a person with dementia may becomemore sexually demanding. As the illness progresses,the person with dementia may no longer be able toconsent to a sexual relationship.

Possible solutions: There is no simple solution tosuch a complex and sensitive issue as this. If youfind that your sexual relationship is becoming aproblem, you should try and talk to an understandingperson about it. There are counsellors trained to talkto people about such problems. Your doctor shouldbe able to put you in touch with someone, or youcould call the SOLACE service (see Local Services).

17. Inappropriate Sexual BehaviourIn some cases a person suffering from dementia may

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exhibit inappropriate sexual behaviour, such asundressing in public, exposing themselves, oraimlessly fondling their genitals. In fact, suchbehaviour is unlikely to be sexual at all. Appearingnaked in the sitting room may simply be the result offorgetting that they should get dressed, or of losingtheir way to the bathroom. A man found 'exposing'himself may only be trying to urinate in an unsuitableplace. One carer's mother seen 'exposing' herself inthe street had wandered out in the cold in her night-dress and pulled it up around her shoulders to tryand keep warm.

Possible solutions: Behaviours such as these cancause severe embarrassment to carers, butunderstanding the problem—and explaining it toothers—should lessen your embarrassment. If theperson touches their genitals in public, don't make ascene, but try to discourage them gently. If theyappear naked, or start undressing themselves,remove them calmly to another room. It may beworth checking that clothing is not uncomfortablytight, or fastenings broken. In those rare cases wherepeople complain and police become involved atruthful explanation usually receives a sympatheticresponse.

18. Verbal and Physical AggressionUsually aggression in dementia is not planned orpremeditated, it is the result of confusion andfrustration, the response to which is poorly controlledbecause of the disinhibition that dementia brings.

A person who has never used bad language inhis/her life before may start to swear, or a previouslycalm and gentle person might become short-tempered and hit out in anger. When it is directed atthe carer it is especially distressing.

Possible solutions: Say you are sorry for theperson's upset and ask them to tell you what istroubling them. Gently encourage them to talk and ifthey are not too angry, hold their hand to comfortthem. Do not raise your voice as this will heightentheir aggressive feelings.

Whatever you do, do not respond to aggression withaggression. It will only make matters worse. Instead,stay calm yourself—count to 10 if need be—and tryto distract their attention. Find out what brings on thereaction—frustration at a difficult task, a certainperson’s presence, rushing to be ready on time—andavoid it in the future. Don't forget that there may alsobe a simple explanation for such a change inbehaviour, like discomfort from constipation or painfrom arthritic joints.

If episodes of violence and aggression become

frequent, you should talk to your doctor or casemanager about medication which may help.

19. Failure to Recognise PeopleA person with dementia often fails to recognisefamiliar faces. They may recognise you as someonethey know, but be unable to put a name to your faceor remember your relationship to them. This isobviously distressing for a spouse carer who hasbeen very close to his/her wife/husband. Theproblem here is that the person's long-term memoryis being affected by the dementia and they are 'livingin their past'. Perhaps if you asked them how oldthey were they would think of themselves as a youngperson—so it is not surprising they don't recogniseyou or mistake you for a dead relative (especially ifyou are a son or daughter carer who resembles theirparent!).

Possible solutions: Keeping out large photographsof family occasions through the years, so that theperson with dementia sees that he/she has alsogrown older has helped some families.Understanding what is happening can relieve thedistress carers feel in such a situation. If it is notpossible to re-orientate the person to the present—who you are and how old they are, etc., then talkabout important people from the past (their present)and about the special endearing relationships whichthey have had. They may talk about you as if youwere a much younger person and by sharingphotographs or mementos you can be brought closer together.

Look After Yourself!

Finally, it is important that you have support withyour care-giving, both from formal services and fromrelatives and friends. Even if you think you don’tneed help now, find out what is available and howlong it takes to arrange, as in some cases it may beweeks or even months. Find out about having aCarer’s Assessment (see Section 4). Then, when thetime comes when you do require help, you can startthe process in good time. Don't be afraid to ask forhelp, as some people might think you want to copesingle-handedly.

You need to take your own needs seriously. Over-doing things could result in physical illness or injury,for example high blood pressure as a result of stressor a hernia from helping the person you care for upfrom bed. Such physical problems could jeopardiseyour future caring role. If you feel you are beginningto have problems in coping ask for help fromservices in your area that are listed in thispublication.



Make sure you have regular breaks from caring—either from a home sitter or by way of day care orrespite care for longer periods.

Consider your emotional needs too. Caring is a verystressful experience. Talk about your feelings withothers who understand what you are going throughand don't keep things bottled up inside. Find out ifthere is a Carers’ Support Group (see Section 3) inyour area and go along and meet others who havesimilar problems. A great deal of mutual support cancome from these meetings and provide atremendous release of tensions which have built up.Alternatively, if you are a private sort of person, callthe SOLACE service and have a chat with volunteersand past carers who have a great understanding andempathy for your situation.

Please Note: 'Practical Guidelines for Care-giving' and'Dealing with Common Problems' have been taken from theHealth Education Council booklet 'Who Cares?' (1992) andamended for inclusion here.

8.3 TEN Helpful Hints for Caring forSomeone with Dementia1. Never ARGUE, instead AGREE.

2. Never REASON, instead DIVERT.

3. Never SHAME, instead DISTRACT.

4. Never LECTURE, instead REASSURE.

5. Never say “REMEMBER”, instead REMINISCE.

6. Never say “I TOLD YOU”, instead REPEAT.

7. Never say “YOU CAN’T”, instead say “DO WHAT YOU CAN”.

8. Never COMMAND or DEMAND, instead ASK or MODEL.

9. Never CONDESCEND, instead ENCOURAGE andPRAISE.

10. Never FORCE, instead REINFORCE.

Taken from a communication seminar by Jo Huey, GreaterNew Orleans Patient and Family Service Committee, asprinted in the Alzheimer Association of Western New YorkNewsletter, Vol. 3, 1998

The Alzheimer’s Society have a number of leafletsthat can give further information (see page 84 for alist of the leaflets).Contact The Alzheimer’s Society on 020 7423 3500or e-mail: [email protected]: www.alzheimers.org.uk

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Caring for a Person with Late Life Mental Illness

Section9:Caring for a Person with Late Life Mental Illness

9.1 Depression in Later LifeIt's often a relative or a friend who noticesdepression coming on in an older person. Gentlyencourage them to accept help. Explain thatdepression is quite common and that, with help, itgets better in the great majority of people. Be clearyourself that it's not a form of 'madness', or thatseeing a psychiatrist or a psychologist is a slur onthe family.

What to DoFirstly, you should encourage the person to speak totheir GP. They are quite used to helping people withdepression and almost all of them have had trainingin how to deal with it.

The time to get help is when feelings of depression inthe person you care for are worse than you wouldexpect, when it has gone on for several weeks, whenit is interfering with their and your life, when theycan't face being with other people or when they getto the point when life hardly seems worth living.

Mild to moderate depression is usually treated firstwith a ‘talking therapy’ with a counsellor. If problemspersist or the depression is severe the GP mayprescribe anti-depressant medication.

Psychological treatmentsThese involve the person experiencing depressiontalking to someone about the way they feel, aboutproblems in their life and about ways of helping themto feel better. They can help both in mild andmoderate depression, but also in severe depressionswhen medication has started to work. It does notnecessarily involve 'baring your soul', which many

people find off-putting, but is usually very practical. It can involve looking at ways of thinking, aboutyourself and the world, which thoughts tend to makeyou depressed—and changing them. It can help ingetting out of the trap of negative thinking that isoften part of a depressive illness.

Anxiety or worry is very common and there are veryeffective ways of helping a person to feel relaxed andworry less. These range from relaxing cassette tapesor CDs to special techniques that can be taught.Sometimes, just talking over problems with a doctor,psychologist or nurse can make a person feel better.Sometimes depression may have been triggered by a bereavement or problems in a marriage.Bereavement counselling or marriage therapy can be very helpful.

Treatment with Medication If the person you care for is so depressed that theyhave physical symptoms (such as poor sleep, poorappetite and loss of weight), your doctor may usuallythink first of prescribing an anti-depressant drug.There are several different types now available, sothere should be no difficulty in finding one to suit.But it is worth remembering that all tablets maycause side effects—your doctor will warn you of thecommon ones. Most side effects are merely anuisance and tend to get weaker or disappearcompletely after a few days—so it's worthpersevering with them. It's also worth knowing thatthese drugs will usually not start to lift a person’smood for a couple of weeks, although they mayimprove sleep quite quickly. You may find that ittakes at least 4–6 weeks for the person to start toget back to normal.

These pages give some information on caring for an older person with a mental healthneed other than a dementia. It may be useful to read Section 7.3 if you have notalready done so.


Social treatmentsThese involve help with practical aspects of dailyliving. Depression might develop because a person isliving in poor housing or a dangerous neighbourhood.If so, a social worker may be able to help the personto move. But word of warning—it is important not tomake decisions about moving when a person is stilldepressed because they may regret it when they arefeeling better. Social workers and mental healthworkers can also help with finding ways to occupypeople with depression and help them spend timewith other people. This can be very importantbecause many people become quite isolated whenthey are depressed and find it quite hard to get backinto the swing of things. There may be lunch clubs,day centres and support groups where the personmay go.

Not getting betterAlthough most people get better at home with thesetreatments, some people do not. If this happens, theGP may ask a psychiatrist to see them for someexpert advice or refer them to the Community MentalHealth Team for Older People. The GP may need asecond opinion or advice about the best treatment ina particular case.

The person may be seen in an out-patient clinic ormay be visited at home either by a psychiatrist or acommunity team member.

The first interview with a specialist psychiatrist orcommunity team member usually takes about anhour. The depressed person may find it difficult toremember some of the details of how it all began.So, the psychiatrist may ask if a friend, neighbour orclose relative can attend with them. It will help thepsychiatrist to get a complete picture of the situation.The outcome may be a change in medication and acommunity psychiatric nurse may visit to monitorthis. A referral to a clinical psychologist may also bemade and the person may be asked to attend dayhospital.

Coming into hospitalA small number of people need to have theirdepression treated in hospital. This may be becausethey cannot look after themselves properly at home,or occasionally because they want to harmthemselves. Sometimes it may be because they needa specialist treatment that is usually only given inhospital.

Staying wellGetting over a bout of depression is usuallystraightforward. But doctors are also interested inkeeping people well and stopping it happening again.

For this reason it is important not to stop any tabletsfor depression until the doctor advises. Even if theperson is feeling back to normal, there's a chance ofdepression returning if they stop their tablets tooquickly. Don't worry, unlike some tranquillisers,tablets for depression are not habit-forming oraddictive.

If the person’s general health is good and there hasbeen an obvious upset leading to their depression,they will probably need to stay on the tablets for only6 to 12 months. If they have already had a number ofperiods of depression, the GP or psychiatrist mayrecommend that they stay on an anti-depressantdrug for much longer. Psychological treatment alsohelps the person to recognize the warning signs thatthey are becoming depressed and teaches themstrategies to help manage these in the future.

Remember that older people with depression gettired easily. It's often enough to show your concernby being there - or particularly by doing somethingpractical to help, like the shopping or cleaning. It'simportant to make sure they eat properly and thismay mean you preparing the food for them as theymay ‘not be bothered’ to prepare food forthemselves.

Don't force them to talk. Don't bully them into doingthings. Although getting out and getting some gentleexercise helps, it may not help if you find yourselfhaving to nag them to do it. In fact, people will oftendig their heels in if they feel they are being put undertoo much pressure.

Be patient. Older depressed people may constantlyask for reassurance or become convinced thatthey've got something physically wrong with them.It's often because they are frightened or don'tunderstand what is happening to them. Reassure asmuch as you can and be a good listener. Especiallyreassure them that they are not going to end up'going mad’.

Don't be embarrassed to ask whether they have feltsuicidal. It's a myth that talking about it makes itmore likely that someone will attempt suicide.Suicidal thoughts are a sure sign that help is needed,and most people who feel like this are relieved whensomeone asks about it.

Finally, don't make decisions about housing oraccommodation when someone you know isdepressed. They may put pressure on you and saythat it's all to do with where they live. But things arenot usually that simple. Many older people who movewhen they are depressed wish, once they have gotbetter, that they had stayed put.

Pages 82 & 83


Looking After YourselfCaring for someone with depression can beexhausting and you may find yourself also becomingdepressed! If you are getting worn out by everything,do ask for help. Community Mental Health Teamworkers can help you by arranging for your relative togo to a day centre or day hospital to give you abreak. They can also help by being there for you totalk to.

9.2 Practical Guidelines for caring forthe Person with Paraphrenia (LateOnset Psychosis).People with late onset psychosis often developstrange ideas and delusions. For example the personmay believe that their neighbours are persecutingthem and that they can hear the neighbours talkingabout them through the walls. The ideas can be quitebizarre e.g an elderly lady may believe that there arepeople living in her loft and that they are sendingmessages down her telephone line.

The symptoms of late onset psychosis can beparticularly distressing for both the older person andthe carer. It is important to first of all check outwhether there is any truth in what the person issaying. Very often it will be very obvious that whatthey think is happening could not possibly beoccurring. However, it may be that they aremisinterpreting something or in fact the situation istrue. It is not unknown for an older person to live in aflat with very thin walls where they can hear musicbeing played by neighbours at all hours of the dayand night! Reassure the person that they are notgoing mad and that you do believe them. However,try not to get caught up in their beliefs and do notcollude with them.

Encourage them to visit their GP and if possible goalong with them to explain the situation. If they haveno insight into their illness and refuse to visit the GPit may be necessary to arrange a home visit. Peoplewith this condition are usually referred to theCommunity Mental Health Team for Older People.They will probably be prescribed medication and aCommunity Psychiatric Nurse will visit to monitor thisand to support the person and yourself.

The person may not believe that they are ill and mayrefuse to take the medication. If possible try andpersuade them to try the medication. However, ifthey adamantly refuse do not get into a battle withthem.

They may be quite socially isolated. It can help toencourage them to go out with you e.g. for a cup ofcoffee in a local café and they may benefit fromattending day hospital or day care.

People with this type of illness may believe that theirproblems will go away if they move, especially if theirdelusions relate to their neighbours. This rarely worksand very often the problems transfer with them.

If the person is very distressed by their delusionsthey may put themselves at risk at home by trying todo something to make the delusions go away e.g.refusing to have the heating on in the depth of winter.If this happens it may be necessary for the person tobe admitted to hospital to receive treatment andcareful monitoring. The person may be very relievedat the suggestion of a hospital admission. However,in some cases it is necessary for them to beadmitted to hospital under a Section of the MentalHealth Act for their own safety.

This condition can be successfully treated withmedication. However, what sometimes happens isthat the person begins to feel well and so stopstaking their medication and then the symptomsreoccur. It is very helpful if carers can keep an eyeon whether medication is being taken as prescribedand encourage the person to keep taking theirmedication.

Keeping yourself wellSeeing the person so distressed by their delusionscan be very stressful for the carer. It can also be verydifficult for the carer when the person who is clearlyvery unwell refuses to accept that there is anythingwrong with them and instead accuses the carer ofturning against them. It is important to have a breakfrom caring and you should talk with the communityteam member who visits to discuss what supportthere is available e.g. it may be possible for somecare in the home or for the person to attend day-care. You may also find it helpful to attend a carers’group or have one to one support either face to faceor over the phone.

Caring for a Person with Late Life Mental Illness


Section10: Information in Another Language

Pages 84 & 85

Mental Health and Other Useful InformationAs part of Mind's continuing commitment to make itsservices more accessible, culturally sensitive andrelevant to Black and Minority Ethnic communities,an exchange of information on mental health issuesin translation, with other organisations hascontinuously taken place.

They have an extensive resource list of informationavailable on their website. The purpose of which is tohopefully provide some useful contacts for peoplewanting to obtain information about mental health inlanguages other than English. 39 languages availableincluding Welsh. Visit:www.mind.org.uk/information/factsheets/diversity

Carers Centre The Carers Centre exists to provide information,support, advice and advocacy for all carers.Languages spoken at the Carers Centre are English,Urdu, Hindi, Punjabi, Sylhety, Bengali and Somali.Loop system available. Telephone 029 2022 1421Monday–Friday, 10am–4pm.

Interpretation ServicesFinally, the following agencies are able to access aninterpretation service where required:

• Cardiff and Vale University Local Health Board

• Vale of Glamorgan Council

• Cardiff Council

• Abertawe Bro Morgannwg University Local Health Board (covering the Western Vale of Glamorgan)

Please see the Cardiff & Vale Mental HealthDevelopment Project website for some limitedinformation on getting help in languages other thanEnglish.

Visit www.cvmhdp.org.uk

Other Organisations OfferingInformation and Advice in LanguagesOther Than English.DementiaAlzheimer's Disease International - provides accessto information on Dementia in 33 languages on it'swebsite - www.alz.co.uk - via it's links to othernational Alzheimer's Society sites. Languages includeWelsh.

Alzheimer's SocietyThe Alzheimer’s Society provides a number ofpopular factsheets (listed below) that have beentranslated into Tamil, Gujariti, Bengali, Punjabi,Somali, Urdu, Arabic, French, Polish and Chineseand will be available to download from the website.They will not be printed.

400 What is dementia? 401 What is Alzheimer's disease? 425 How the GP can help 426 Diagnosis and assessment 445 Counselling: how can it help? 458 Progression of dementia 460 Mental Capacity Act 2005 467 Financial and legal affairs 472 Enduring power of attorney and lasting

powers of attorney 500 Communicating 509 Dealing with aggressive behaviour 524 Understanding and respecting the person

with dementia

In addition the following link shows factsheets currently available in Welshhttp://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=651

Telephone 020 7423 3500 email: [email protected]


Are You Involved? Section11:Carer and Service User Involvementin Mental Health Services for OlderPeople

What is Carer & Service User Involvement?Carer and Service User Involvement is about makingsure views from such people are heard, are actedupon and are used to change and improve careservices for the better.

This would be in all areas of care, from an individual’sfirst contact and personal involvement with servicesthrough to provision of services in general.Involvement of Carers and Service Users should beseen in planning, implementation, delivery,monitoring and evaluation of services.

Involvement by Carers and Service Users meansservices become more suited to the needs of thosewho use them and therefore make them moresuccessful. It also shows their views are importantand are acted upon.

Involvement of Carers and Service Users is astatutory requirement across the health careagencies; included in this are Local Health Boards,Local Authorities, and NHS Trusts. Voluntary andIndependent care providers are also governed by thisrequirement. For Cardiff and the Vale of Glamorganthere are Development Workers who co-ordinateInvolvement of Carers and Service Users in OlderPeople’s Mental Health Services (see contactsbelow).

Are you involved?If you are a Carer or Service User there are manyways in which you can become involved and make areal difference to care services now and in the future.There are a variety of events with current interestingtopics you could attend to give your thoughts inperson.

Firstly there is the Carers Involvement Group (Cardiff)that meets every two months and is actively involvedin the local development, delivery, monitoring andevaluation of services for the benefit of older people

with Mental Health Needs and their Carers (see backpage advert). The Older People’s Mental HealthForum performs a similar function in the Vale ofGlamorgan.

You can also be involved through a Carer SupportGroup (see Section 3). There you may be asked foryour thoughts on a particular subject in a supportiveand comfortable environment. You can even ask for aspecial meeting on a topic that concerns you or yoursupport group to be arranged.

You could participate in special one-off events andmeetings, you can ask to be involved in issues bycorrespondence, telephone or email. Look out fornotice of these events by poster and flyercampaigns, information in newsletters or on ourwebsite www.cvmhdp.org.uk

If you would like to know more about becominginvolved, would like to be on our mailing list (so thatwe can let you know about forthcoming events) orhave any questions please contact:

Jane Patreane the Involvement DevelopmentWorker (Cardiff) or

Matthew Salisbury the Involvement DevelopmentWorker (Vale of Glamorgan)

Telephone: 029 2022 2000 Email: [email protected]

Remember your views are wanted and,most importantly, are needed!


Booklist: Useful Reading

Pages 86 & 87

The Simplicity of Dementia: A Guide forFamily and Carers (Paperback)by Huub Buijssen (Author) "Living with, and caringfor, a partner/relative with dementia is often far fromeasy..." £13.95*

This is a short, elegant, clear book which is a very goodstarting point for anyone whose friend or relative isdiagnosed with dementia. The author has a wealth ofexperience with dementia patients and their carers, andimmense compassion, and it shows. He gently and simplyexplains what happens as dementia progresses, andmakes sense of behaviour which carers can findincomprehensible. He offers valuable pointers on how tocope with dementia, always focusing on the humanity ofthe patient, and the importance of their feelings, e.g. byusing touch, tone. A very valuable book.

Is the Cooker Turned Off? Caring for anOlder Person with Failing Memory(Paperback) by Josephine Woolf (Author), MichaelWoolf (Author) "This book is about caring for an olderperson with failing memory..." £7.15*

This book is essential reading for any carer of someonewith failing memory. This book shares the professionalknowledge of physiological, psychological and practicalexpertise which could enhance the lives of both the carerand the person they are caring for.

Now Where Did I Put My Glasses? Caringfor Your Parents - A Practical and EmotionalLifeline (Paperback) by Jackie Highe (Author) £8.44*

A very readable book on a very difficult subject that affectsus all sooner or later. Good advice about keeping thecommunication channels open and looking at the positiveside and even the amusing incidents and remarks notalways easy to appreciate when one is dealing with aproblem. I was particularly moved by the chapter on"Mental Disorders" - great practical advice and usefuladdresses.

A Funny Old World and Beside the Seaside(Hardbacks) by Pictures to Share Community InterestCompany (a not for profit social enterprise thatproduces visual resources for people with dementia)£17.50 & £15 respectively

Large picture books aimed at stimulating conversationamong carers and people with dementia. These bookshave been researched and designed by Helen Bate whostruggled to find visual resources to engage with hermother who had dementia. She said “my mother wasimmediately engaged by the books and they were a greatdistraction when things were happening, for examplechiropody, which she didn’t enjoy”. To request a Pictures toShare brochure contact Helen on 01829 262565 or [email protected]

How You Can Survive When They'reDepressed: Living and Coping with DepressionFallout (Paperback) by Anne Sheffield (Author) £11.69*

One reviewer said “I read this when my partner wasexperiencing a particularly low depressive episode, and Iwas beginning to doubt that I could cope. I felt isolated,insecure, and as though I had lost the person I loved themost in the world. Reading this book helped me in somany ways: to understand more of what he wasexperiencing, the effect this was having on me, the effectthis was having on our relationship and how I shouldn'ttake his depression personally. It helped me realise that tocontinue to help support him, I needed to support and lookafter myself more. The book provided me with some of thatmuch-needed support. Well worth reading.”

Dancing with Dementia: My Story of LivingPositively with Dementia(Paperback) by Christine Bryden £12.30*

A reviewer said “Reading Dancing with Dementia is a mustfor any person who has been diagnosed with Dementia,Professional or Carer. The book is truly inspirational andChristine is so positive about her journey. As aprofessional, I found that it helped confirm where we hadgot it right and thus continue to carry on and move forwardbut it also highlights the road that we still need to travel if


we are to deliver a truly person centred approach. Thebook took me 4 hours to read—I couldn't put it down!”

Caring for Loved Ones in Old Age: Being aCarer, Paying for Care and Choosing a CareHome: Care for the Elderly (Paperback) by Counsel And Care (Author)£8.99*

One of the biggest challenges facing society is how welook after the growing number of older people. Medicaladvances have given us longer, healthier lives, but the costis the demands placed on us as individuals, families andcommunities try to care for parents, relatives and friends inlater life. This book provides guidance on a subject thatmost of us will have to face, but which few of us know verymuch about. It explains what help carers, and those theylook after, can expect from the state, and the other self-funded options available.

Past Caring(Paperback) by Audrey Jenkinson (Author) "Readingabout other people in similar situations gave me asense of not being quite so alone but somehowconnected to the world ..." £8.49*

Actress Audrey Jenkinson was starring in a BBC televisionseries when she put her career on hold and returned hometo Edinburgh to care for her mother suffering from a strokeand her father with cancer. In Past Caring, she describeshow she tried to cope with her parents’ deaths and recallsthe ‘void’ she felt at the time: "I wondered how otherscoped in similar situations. When I discovered there wereno books on the subject, I decided to write one." Audreytravelled throughout the UK, interviewing former carers andasking them how they rebuilt their lives. Past Caring alsoincludes a twelve-step recovery guide for ‘past carers’.

Losing Clive to Younger Onset Dementia:One Family’s Story (Paperback) by Helen Beaumont (Author) £12.34*

Clive Beaumont was diagnosed with Younger OnsetDementia at the age of 45 when his children were aged just3 and 4. Clive’s wife, Helen, tells of how she and the rest ofthe family coped with the challenge of continually adaptingto his progressive deterioration. This story is for the familyand friends of people with the condition, for the peoplethemselves, and for the professionals working with them. Areviewer said “Family members of young people withdementia will find this book reflects many of theirexperiences and emotions as they deal with the ever-shifting nature of the disease as it progresses”

The Wilderness(Paperback) by Samantha Harvey (author) £9.09*

‘Wilderness’ is the story of Jake, a widower in his mid-sixties who faces the frightening onset of Alzheimer’s. Hislife is already falling apart, and with his son in prison andhis career ended, and as the disease begins to take holdJake struggles to get a grip on his life story. Is hisdaughter alive? Long dead? Where did his life go wrong?The more he tries to establish a solid hold on his keymemories, the more they seem to change and slip away, asif his mind was losing the distinction between dreams (ornightmares) and reality. ‘Wilderness’ is a compelling look atthe aging process, and a powerful story of one man’sattempt to make sense of his life even as he loses his gripon reality. A reviewer said that this is “a sensitive novel toldwith heart and passion and raises not only questions aboutwhat it means to have Alzheimer’s but also what it meansto be human and alive and loved”

Remind Me Who I Am, Again (Paperback) by Linda Grant (author) £7.19*

In 1993 Linda Grant’s mother, Rose, was diagnosed withmulti-infarct dementia. With Rose’s memory deteriorating, awhole world was in the process of being lost. In this workshe looks at the question of identity, memory andautonomy that dementia raises. A reviewer said “This is abeautifully written book, exploring the consequences ofloss—the gradual loss of memory because of illness, theloss of time, of the past, of meaning. This is a book whichwill have a meaning for anyone touched by Alzheimer’s.

No More Apples for Tom (Paperback) by Marianne Rumens (author) £7.95*

Marianne Rumens husband, Tom, suffered from the rareform of dementia known as Pick’s Disease (or FrontoTemporal Dementia). He was eventually diagnosed after along fight to overcome the increasing difficulties of dailylife. This book describes their life together and her lovingcare that was pushed to breaking point. Her book will giveencouragement to all those carers fighting with and for theNational Health Service and her campaign continues toraise awareness of this little known condition.

*Guide prices taken from Amazon.co.uk May 2009 andsubject to change.


Local Services (pages 9 to 27)Advocacy 9Age Concern 9Alzheimer’s Society – Cardiff & Vale Branch 10Applied Psychologists 11Awetu 11British Red Cross – Vale of Glamorgan 11Care & Repair Cymru 12Care and Social Services Inspectorate Wales 12Carers’ Wales 12Citizens Advice Bureau 13Community Advice Listening Line 13Community Alarm Service (Cardiff) 13Community Alarm Service (Vale of Glamorgan) Telev 14Community Health Councils 14Community Mental Health Teams (CMHTs) – Mental Health Services for Older People 14Consultants in Old Age Psychiatry 15Continence Advice 16Counselling 16Crossroads – Cardiff & Vale 17Crossroads in the Vale EMI Limited 17Cruse Bereavement Care – Cardiff & Vale of Glamorgan 17Day Hospitals - Mental Health Services Older People 18Dental Service – Community 18Dental Service – Hospital 18Department of Nutrition and Dietetics 19Emergency Social Work Team – Cardiff & Vale of Glamorgan 19Equipment 19General Practioners (GPs) 19Holidays 19Homecare – Private 20Hospital Discharge Service – Age Concern 19In-Patient Services – Mental Health Services Older People 20Involvement 21Journeys 21Manic Depression Fellowship (MDF) 22Memory Team 22Mental Health Development Project – Cardiff & Vale of Glamorgan 23Mind – Cardiff and Mind in the Vale of Glamorgan 23Older People’s Liaison Psychiatric Team 24PRT Carers Centre 24Parkinson’s Disease Society 24Practice Development Unit – Mental Health Services for Older People 24

Index: Index of Local &National Services

Pages 88 & 89


Red Sea House 25Residential and Nursing Homes 25Respite Care 25Solace 26Speech, Language & Communication 26The Stroke Association 26Voluntary Emergency Service Transport (VEST) 27Younger People with Dementia – Cardiff & Vale of Glamorgan 27

National Services (pages 29 to 35)Action on Elder Abuse 29Age Concern Cymru and Help the Aged in Wales 29Alzheimer’s Society 29Alzheimer’s Society – Wales Office 30Arthritis Care 30Arthritis Research Campaign (arc) 30Bladder and Bowel Foundation 30Carers’ UK 31Centre for Policy on Ageing 31The Cinnamon Trust 31Citizens Advice 31Counsel and Care for the Elderly 32Crossroads Caring for Carers 32Crossroads – Wales Divisional Office 32Cruse Bereavement Care 32Disabled Living Foundation 32Huntington’s Disease Association 33MIND 33MIND Cymru 33Parkinson’s Disease Society 33Picks Disease Support Group 34RADAR 34The Relatives & Residents Association 34The Royal British Legion 34Samaritans 34Stroke Association 35Vitalise 35


Pages 90 & 91



Carers Involvement GroupYes? Then you have the experience to join the

The group is actively involved in the local development,delivery, monitoring and evaluation of services for the benefitof older people with Mental Health Needs and their Carers.

The Carers Involvement Group is always looking for carers and recent carers to join their local group and help

make a difference!

For more information please contact:Jane Patreane (Cardiff Area) or Matthew Salisbury (Vale of Glamorgan)

telephone: 029 2022 2000email: [email protected]

Have you or are you

currently caring for

an older person with

mental health needs?


Documents

Directions-09 17/7/09 18:41 Page 1 DIRECTIONS · DIRECTIONS 2009 A guide to older people’s mental health services in Cardiff and the Vale of Glamorgan, including younger people