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Marie Lynch & Bryan Nolan Dementia in Ireland Time For Action Sonas 11 May 2015 SUPPORTING PEOPLE WITH DEMENTIA TO DIE WELL

Changing Minds Programme

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Marie Lynch & Bryan Nolan

Dementia in IrelandTime For Action

Sonas11 May 2015

SUPPORTING PEOPLE WITH DEMENTIA TO

DIE WELL

Presentation Outline

1. Irish Hospice Foundation

2. Dying at home with Dementia

3. Communicating on end of life with people with dementia

IHF Vision & MissionOur Vision is that no one should face death or bereavement without the care and support they need

Our Mission is to achieve dignity, comfort and choice for all people facing the end of life. We do this by addressing, with our partners and the public, critical matters relating to death, dying and bereavement in Ireland

IHF Programmes

•Palliative Care for All • Primary Palliative Care• Hospice Friendly Hospitals• Bereavement Education and Training• Children's Programme • Forum on End of Life • Fundraising

Education

Grant programmes

Innovation

Awareness raising

Advocacy

Living and dying well with dementia - POLICY

RESOURCES for End of Life

Death and dying in Ireland • 30,000 people die every year

Dying at home with dementia in Ireland

1. WHAT THE LITERATURE SAYS

2. WHAT WE KNOW FROM THE IHF NURSES FOR NIGHT CARE SERVICE

3. IRISH INITIATIVES

LITERATURE ON DYING AT HOME WITH DEMENTIA

• Place of death and dementia • Place of death is influenced by the nature of the final illness,

the presence of co-morbidities, socio-economic and personal care circumstances and age.

• Death in dementia is more common in care homes than other locations.

• The Carer

• Symptoms and care needs

2007 2008 2009 2010 2011 2012 20130

10

20

30

40

50

60

70

# of people with dementia accessing NN service • No of people

referred• Age • gender • geographical profile• Comparison with

other diseases

NN service Geographic and age breakdown 2013

048

12

1

812

4 41

62 1

52 2 2

51 1 1

3 2

2013 LHO Dementia Referrals

<65 65-70 70-75 75-80 80-85 85-90 90-95 95-100 >10002468

10121416

3 34

3

1415

13

6

2

2013 Dementia Referrals- Age Profile

Dying at home with dementia in IrelandDevelopment projects• UCC –case studies• Compassionate communities Milford• SPC north west

Voice of carer:

Presentation Outline

1. Irish Hospice Foundation

2. Dying at home with Dementia

3. Communicating on end of life with people with dementia

Education and development

The context for the Irish Hospice Foundation’s work is end-of-life care

The focus of Changing Minds is end-of-life care for people with dementia

So what is that, in ‘real life’?

‘Typical’ trajectory towards EOL with dementia

PERSON

 

 FAMILY/CARERS

 

 GP

 WELL AT

HOME

 REFERRAL &

DIAGNOSIS

 

LIVING IN NURSING HOME

 

 DEATH

 

SYMPTOMS EVIDENT

 DECLINING HEALTH/

SIGNIFICANT CARE NEEDS  

ADMISSION TO

NURSING HOME

 

Family notice

symptoms;

encourage consult

GP

Visit to GP / Memory Clinic/

Specialist

Family a significant

part in provision of day-to-day

care

GP tracks impact of illness, both on both person and on

carer(s). GP assists family to access help for person and for

themselves

Family members

access home help

Bereavement support

Mild cognitive impairment Moderate cognitive impairment Terminal phase of illness

Family members

can not care for person at home

Family = key ‘partner’ in caring for

and advocating for person

May be multiple GP visits/admissions to

acute hospital throughout this period

Coroner

 GREATERCARE

NEEDS AT HOME

 

The ‘target groups’

EOLC for PEOPLE WITH

DEMENTIA

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Workshop covers: End-of-life care, communication and

person-centredness Communication – what helps and

hinders The impact of dementia on

communication ability Models of dementia care and how to

communicate Tips and techniques for

communicating with people with dementia

Communicating with People with DementiaA new half-day workshop for staff working in residential careA Dublin study (Cahill and Diaz-Ponce, Journal of Aging and Mental Health,

July 2011) concluded: “The findings support the evidence that people with a cognitive impairment and even those with advanced dementia can often still communicate their views and preferences

about what is important to them”

Targeted education and training

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EOLC for

PEOPLE WITH DEMEN

TIA

‘WHAT MATTERS TO ME’ – a day-long workshop on end of life care, including advance care discussions and working with families,

for residential care staff. Since 2012, over 2,000 staff have completed this workshop.

‘COMMUNICATING WITH PEOPLE WITH DEMENTIA’ – a new half-day workshop

‘SUPPORTING FAMILIES’

A new programme of four consecutive sessions for family

members (relatives and

friends) of residents

Plan to scope new educational input to support GPs to provide

end-of-life care to

residents, including

those with dementia

Supporting Families

A new programme of four 90-minute sessions, run over four consecutive weeks, for family members (relatives and friends) of residents.

1. When someone you care about is in a nursing home

2. How to have a good visit with a relative/friend with dementia

3. Family involvement in thinking ahead and decision making in end-of-life care

4. When someone you love/know is dying

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The rationale for trying to communicate better with people with dementia• To be human is to relate. Communication is core to good

relationships. Good relationship is core to person-centredness.

• It’s good practice and ensures better quality of care.• Communication is central to palliative and end-of-life care,

hence the IHF’s interest in this issue. Good communication helps people to live well and to die well.

• When you focus on the person rather than the disease you can find strengths ,abilities and a history

PATCHY DEMENTIA CARE PUTS PATIENTS AT RISK OF UNNECESSARY SUFFERING, SAYS CARE QUALITY COMMISSION

“People with dementia may not be able to tell staff about their discomfort. The CQC found that some care plans said nothing about how individuals communicated that they were in pain, leaving staff to rely on their own judgment. Patients were thus put at risk of suffering or receiving inconsistent pain relief if their agitation was wrongly attributed to their dementia…”

The Guardian, Monday 13 October 2014 PATCHY DEMENTIA CARE PUTS PATIENTS AT RISK OF UNNECESSARY SUFFERING, SAYS CARE QUALITY COMMISSION

“People with dementia may not be able to tell staff about their discomfort. The CQC found that some care plans said nothing about how individuals communicated that they were in pain, leaving staff to rely on their own judgment. Patients were thus put at risk of suffering or receiving inconsistent pain relief if their agitation was wrongly attributed to their dementia…”

The Guardian, Monday 13 October 2014

Cluster not hierarchy of needs in Dementia

CompassionCompetence Conversation

Love

Identity

Inclusion

Occupation

Attachment

Kirkwood2004

Comfort

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Communication is key to meeting needs

People living with dementia are still people – mothers, fathers, sisters, friends, partners. They still have basic human needs and preferences and a desire to express and make decisions for themselves.

“Not knowing where I am doesn’t mean I don’t know

what I like.”

(Mozley et al., 1999)

23So, how might people with dementia feel?

• Lost, confused, bewildered…• Where am I? •What is this place? •Why am I not at home? •What is happening to me?

• Anxious, fearful…•Why are these people asking me questions? •Why do I have to follow their rules? •Why are they taking me away? •What do they want from me?

• Sad, lonely, depressed…•When can I go back to live with my people again? •Where are my family? • Am I dying?

• Angry, frustrated…•Why can’t I have/do what I want? •Why can’t I remember? •Why can’t I find the words I

need? •Why can’t they understand? • Embarrassed, ashamed…

• Why are they looking at me like that? •I can’t remember who that is… • I don’t know what they mean… •What’s wrong with me?

As well as happy, content, amused, excited and all the other ‘good’ emotions…

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Good end-of-life care involves askingpeople what they want and giving them choice. But can people livingwith dementia make choices anddecisions about their end-of-life care?

A Dublin study conducted in 2010 concluded:

“The findings support the increasing evidence that people with a cognitive impairment and even those with a probable advanced dementia can often still communicate their views and preferences about what is important to them.”

Cahill & Diaz-Ponce (2011) Journal of Aging & Mental Health

Communication is key to meeting needs

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Communication in practice• In reality, communication in any circumstance can easily go wrong.

• One of the biggest challenges in any interpersonal communication is making wrong or unchecked assumptions…

• Common assumptions that have been made in the past about people with dementia include:

• “That’s not my mother in there…”

• They’re beyond reach, ‘just an empty shell’

• Their dependence makes them children again

• ‘Once they’re gone, they’re gone’

• All people with dementia are pretty much the same

• They don’t or can’t know what they want

• Their dementia is the single source of all their problems and behaviours

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Dementia and emotional memory• Have a look at this video on memory and dementia

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Tips: communicating with someone with dementiaBefore you speak – attending to the issues of relationship and environment

• How you are will affect them. If you are rushing or feeling stressed, take a moment to calm yourself. Try to be patient, grounded and positive.

• Make sure you have the person's full attention. Use their name. Try to make eye contact and to be at the same level (sitting, standing) as they are.

• It may be useful to have an idea for a particular topic ready to avoid awkward silence at the start. Also, it can be useful to have pictorial cues or other visual communication aids and apps to hand.

• Make sure that the person can see and hear you clearly. See if you can minimise any competing noises or background activity if they are getting in the way.

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How to speak with someone who has dementia

• Speak clearly and calmly and at a slightly slower pace.• Avoid speaking sharply or raising your voice• Use short, simple sentences. Don’t ask double-ended

questions.• Show respect. This person is an adult – don’t infantilise

them. • Try to laugh together about misunderstandings and

mistakes – it can help.• Try to include the person in conversations with others.

Being included can reduce their feelings of exclusion and isolation.

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Communicating and connecting – 3 golden rules*

Don’t ask people with dementia direct questionsAvoid asking any direct question that requires the person to search for factual information that may not be stored in their memory. They are already aware of their disability. Not being able to retrieve information will make them feel worse.

Listen to the expert (the person with dementia) and leave them feeling goodListen to the questions the person is asking, and consider what the best answer might be from their perspective. Feelings are more important than facts. The information they receive should generate good feelings, not anxiety.

Don’t contradict, followPeople with dementia are likely to use intact memories from their pre-dementia past to understand what is happening around them in the present. We should avoid disturbing the sense they are making, and follow them, rather than expecting them to follow us.

* Based on the SPECAL method, an innovative way of seeing dementia as a disability and understanding it from the point of view of the person with the condition

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IN CONCLUSION

Acknowledgements- People with dementia and their families- IHF Programme team- Atlantic Philanthropies

For more information

Marie LynchBryan [email protected] [email protected] Ph: 01 679 3188

living to the end

THANK YOU