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Kent Learning Disability Alliance
The Alliance Pathway to Dementia Assessment,
Diagnosis and Treatment Service (DADT)
For People with Learning Disabilities.
Document Control
Version Draft/Final Date Author Summary of changes1 Draft November
2014Kerry Barnard
2 Draft June 2017 Kerry Barnard Update resource list, amended route, proof read.
3 Draft January 2019
Kerry Barnard,Louise Macdonald, Karin West, Mikaela Szollosi
Review & update, after consultation
4 Draft February 2019
Kerry Barnard Review
5 Finalised March 2019
Kent LD Alliance Finalised
Review
Version Approved date Approved by Next review due
1 March 2019 The Alliance March 2020
Members of the working group: Updated February 2019
Brenda Fox, Head of Sensory Services
Catherine Epps, Associate Head of Profession, SALT
Diane Lilley, Senior Occupational Therapist
Dipa Nadji, Senior Physiotherapist
Dr Mo Eyeoyibo, Consultant Psychiatrist
Dr Sheila King, Clinical Psychologist
Jane Frankel, Associate Head of Profession, Physiotherapy
Karin West, Specialist Occupational Therapist
Kerry Barnard, Specialist Matron
Louise MacDonald, Specialist Occupational Therapist
Lucie O’Mally, Specialist Speech & Language Therapist
Matt Clark, Senior Occupational Therapist
Mikaela Szollosi, Specialist Speech & Language Therapist
Pene Stevens, Head of Community Nursing
Teresa Davidson, Sensory Assistant
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Dementia screening for people with Downs Syndrome.
Referral for a person with Downs Syndrome over the age of 30 for a baseline DSQIID received via
any Alliance Professionals.All DSQIID results to be shared with GP’s
Person with Downs Syndrome screened using the DSQIID score 20 & above.
No action until the person
reaches 40 years of
Once the individual reaches the age of 40 they will be screened 2 yearly
Reactive Monitoring follow
Dementia pathway as need
is identified. Ensure regular health checks.
50 years old screen yearly.
Initial Screening raises no concerns, no further action until the person is 40; unless there are any changes in their cognitive functioning.
NB: If the Score is 18 –
19 it is advisable to
re-screen in 6 months
Process for monitoring/flagging is centralised, information to go to local champions who will update spreadsheet.
Refer to DADT Pathway
NB: Always consider the score in conjunction with the story of change over time.
Pathway to DADT service for people with learning disability.
Continued Alliance input from all services as required throughout the DADT pathway.
Occupational TherapySee page 10
Physio Therapy
See page 9
Speech & Language Therapy.See page 12
Community Nurse
See page 11
Vision & Hearing
See page 8
Care Management
See page 15
Refer to Community Nursing Service to carry out a comprehensive health assessment, screen for any health issues, such as: hypothyroidism, depression.
Contact made to the GP to request a Physical health check. Blood test etc:
Health check identifies physical health/mental health concerns to be treated. Rescreen as appropriate in the future.
No physical/mental health need identified following nursing assessment, pursue assessment and possible diagnosis of Dementia.
Referral to the Alliance for existing or new client for an assessment due to some changes in cognitive functioning and/or decline in social functioning.This referral may be presented to any service within the Alliance.
DSQIID with a score of 20 or above; with a history of change over time for people with learning disabilities with or without downs syndromePlease do not discharge continue collaborative working.
The Alliance takes responsibility for completing screening tool DSQIID. Tool best completed with care giver who can give history and context of changes that have led to dementia assessment being sought, using attached questionnaire and scoring All DSQIID results to be shared with GP’s.
MHLD Psychology Psychiatrist See pages 13 & 14
Attached letter, DSQIID, & results from GP test sent to DADT & MHLD. Please note joint working will be required between DADT & Alliance Blood test indicates
no concerns. Rescreen as appropriate in the future.
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Introduction
The Pathway to Dementia Assessment, Diagnosis and Treatment Service (DADT) has been developed to provide guidance for professionals working with people with learning disability where there is concern, they may have the onset of dementia. It provides guidance for the Alliance through screening and assessment to inform further assessment and diagnosis in relation to dementia. Ensuring a co-ordinated, standardised approach to multi-disciplinary working.
Within this pathway the umbrella term ‘dementia’ is used although it is important to recognise this covers many different types of dementia; most commonly Alzheimer’s dementia, Vascular dementia, Frontotemporal dementia, Lewy body dementia and Parkinson’s dementia. The life expectancy of people with learning disabilities is increasing with people living longer, they are more prone to developing age related conditions. Additionally, there is evidence of a higher risk of dementia for people with Downs Syndrome.
It was identified that a Pathway to DADT Services was required for the professionals within the Alliance; as they were requesting more structure around the screening for people with Downs Syndrome and any follow ups required around health checks. This will ensure that any other possible causes of changes in cognitive functioning have been considered, treated and ruled out prior to referral to DADT Services. Further recommendations around continued involvement during the diagnosis and treatment of dementia are included in the pathway. Effective care will be enhanced by providing good collaborative working with all agencies; generic older people’s services, learning disability services, statutory, private and voluntary services.
The emphasis is around continued collaborative working for the person to have high quality, safe and person-centred care as the dementia progresses.
This pathway does not refer to research findings, to maintain the longevity of the document; there are references provided for further reading at the end of this document.
This document has purposefully not defined the group of individuals that should be referred to DADT as it is considered that it would be a multidisciplinary collaborative decision around whether the DADT Services would be appropriate for the individual. It may be considered that the person would benefit from accessing only some parts of the service provision.
These decisions should not be based on the level of the individual’s learning disability more around whether the person’s needs can be met within the DADT Service with any reasonable adjustments being provided.
Dementia Care Pathway
The Dementia Care Pathway has been adapted for Kent Community Health NHS Foundation Trust from the Pan Sussex Integrated End of Life and Dementia Care Pathway, the following example has been taken from the Dementia Care Strategy.
The six phases of the Dementia care:
1. Recognising the problem (awareness)2. Discovering that the condition is dementia (assessment, diagnosis and involving the
person with dementia in planning for their future care)3. Living well with dementia (maximising function and capacity and planning for the
future to enhance wellbeing)4. Getting the right help at the right time (accessing appropriate and timely support.
Reviewing advanced care plans)5. Nearing the end of life, including the last days of life (palliative care and ensuing
advance care plans are reviewed and respected)6. Care after death (supporting relatives and carers to maintain wellbeing)
Phase 1 Phase 2 Phase 3 Phase 4 Phase 5 Phase 6
Recognising there is a problem
Discovering that the condition is Dementia
Living well with Dementia
Getting the right help at the right time
Nearing the end of life including care in the last days of life
Care after death
It is important to recognise that people with dementia can move back and forth between stages three and four and timescales will vary.
These phases of dementia care are designed to help people to understand what support to expect; what is possible and what support to ask for at each phase. However, getting the right support, information and advice is crucial for people living with dementia, their carers and friends to be able to live with dementia.
Discussions about end of life care
Co-ordination, monitoring & reviewingCare & support
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Evidence and Support
The evidence regarding dementia for people with Downs Syndrome and learning disabilities indicates that it is increasingly common due to the fact that:
1. People with learning disabilities are living longer and dementia is a condition related to older people.
2. Research has evidenced that people with learning disabilities are five times more likely to develop dementia than the general population.
3. Research has also evidenced that people with Downs Syndrome are more likely to develop dementia at an earlier age than the general population, often around the ages 35 to 45 onwards.
(Making Reasonable Adjustments to Dementia Services for People with Learning Disabilities. IHAL 2013)
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Aims of the DADT Pathway
Ensure that early screening, assessment and early diagnosis of dementia is achieved
To create a baseline for clinicians to work from To encourage multidisciplinary working regarding assessment and intervention Provide clear guidance on the dementia screening process and when to rescreen Ensure equality of care regarding accessing specialist dementia services
Downs Syndrome Screening Pathway
All people with Downs syndrome over the age of 30 will be offered a DSQIID screening, this is a baseline screening and any individual has the right to decline the screening. If there are mental capacity/consent issues they must be managed in accordance to the Mental Capacity Act guidance.
The DSQIID screening is a series of questions that are scored post screening by the clinician:
If the score is 20 or above further assessment is required.
There is a note that if the screening is borderline such as 18 or 19 it is advisable to rescreen in six months (Reactive Monitoring).
If the screening score is below 18 the guidance is to offer a rescreen when the person is 40 years old. This initial screen will be the base line and shared with the GP and held in their clinical record.
When the person is 40 years old, the guidance is to offer a screen every two years.
After the age of 50 years old they will be offered a screening yearly (Reactive Monitoring).
Outcome:
The score is 20 or above further assessment of health and history to be obtained; refer to Dementia pathway for guidance.
It is important to mention that this tool is only a screening tool which should identify a person’s change in their cognitive functioning; however, the outcome scoring is open to interpretation.
The cut-off score of 20 is for guidance and it is important that the professional obtains the story of change for consideration and consultation with the multi-disciplinary colleagues prior to future action. The DSQIID is a guidance tool and there has been evidence that the scoring outcome may not always reflect the story of change.
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Note: A copy of any DSQIID screening should always be shared with the GP and held on their clinical records.
Dementia Screening Pathway
Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) has been the chosen tool for screening early detection of dementia in adults with learning disabilities. It is completed by MDT professional with the carer who known the individual for some time.
The DSQIID screening is a series of questions that are scored post screening by the clinician:
If the score is 20 and above; indicates cause for further assessment.
There is a note that if the screening is borderline such as 18 or 19 it is advisable to rescreen in six months (Reactive Monitoring).
If the screening is below 18 the guidance is to offer a rescreen when the person is 40 years old. This base screen will be kept on file for reference. This information is to be logged on a spread sheet for future reference and move to Reactive Monitoring.
Outcome:
The score is 20 or above further assessment of health and history to be obtained; refer to Dementia pathway for guidance.
It is important to mention that this tool is only a screening tool which should identify a person’s change in their cognitive functioning; however, the outcome scoring is open to interpretation.
The cut-off score of 20 is for guidance and it is important that the professional obtains the story of change for consideration and consultation with the multi-disciplinary colleagues prior to future action. The DSQIID is a guidance tool and there has been evidence that the scoring outcome may not always reflect the story of change.
Note: A copy of any DSQIID screening should always be placed on the client’s personal file.
Score 20+
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If the person has scored a DSQIID score of 20 or above:
Refer to Community Nursing Service for a comprehensive health screening.
Community Nurse to liaise with GP around carrying out a comprehensive health assessment.
If the health assessment has identified a physical or mental health condition input continues until client shows signs of recovery. Then it is advised to rescreen if appropriate, in the future.
No physical or mental health condition has been identified then it is advisable to request blood tests if they have not been carried out.
Blood results indicate no concerns, rescreen in the future if appropriate. Further investigation may be required to establish cause of changes.
Blood results indicate possible signs of a dementia related condition, it is therefore recommended to refer the client to DADT Service; include the blood tests results, DSQIID information and history for further assessment.
Note: A copy of any DSQIID screening should always be placed on the client’s personal file.
Note: The DADT Service have requested continued involvement from practitioners as your specialist learning disability knowledge and skills are essential to the person-centred planning process.
Reactive monitoring.
Reactive monitoring starts when concerns have been raised regarding possible deterioration of cognitive ability, level of functioning or a change in personality. An initial baseline DSQIID has been carried out with low scoring which means a baseline has been set; ongoing monitoring by carers who are encouraged to report any changes to the relevant people.
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ALL SERVICESThe Multi-disciplinary team will work with the individual supporting them through the process of meeting their personal needs and ensuring they have a comprehensive assessment, liaising with other professionals ensuring that information is provided in a way that the individual understands and has choice around planning for their future.
Each service can offer the following; as well as their specific specialities:
Co-ordinate and lead through the through Mental Capacity Assessments and review ‘Best Interests’ protocols.
Provide information and education around safe guarding vulnerable adult care. Provide training and information around dementia. Educate and inform generic services regarding dementia and learning disabilities. Signposting: such as referring on to Admiral Nurses. Work Person Centred. Work collaboratively with other services. Coordinate and lead around risk assessments.
Vision and Hearing Support TeamVision and Hearing work with/support people who are Deaf or have a hearing impairment, are severely sight impaired (previously known as blind) or sight impaired (previously known as partially sighted). Also, people who have a dual sensory loss (acquired) or are deafblind (congenital).
Assessment Ophthalmic/auditory functional assessments. Vision - ascertaining visual acuity, tracking movements, visual fields. Hearing - examination for evidence of impacted wax, auditory responses to various stimuli. Environmental - ensuring home and/or place of work is ‘dementia friendly’ - that it is calm,
predictable, makes sense, is familiar, suitably stimulating, safe and risk assessed. Sensory room - formal or informal assessments in the sensory room are undertaken to
ascertain likes and dislikes for sensory equipment, e.g. vibrating cushions, colour-changing fibre optics/projectors and bubble tubes which may prevent boredom and/or promote feelings of wellbeing.
Intervention Promote healthy eyes and ears. Advice/support to attend ophthalmic/auditory appointments. Where required, support with tolerance of spectacles/hearing aids Installation of relevant assistive technology and management of. Use of tactile clues and cues and appropriate lighting will also be included in the
environmental assessment. Environments are assessed for ‘visual/auditory clutter’, e.g. varied floor colours and textures, poor contrast of nosing on steps/stairs, patterned carpets, mirrors and/or installing lights that causes shadows may cause disorientation and further confusion for the sensory impaired person with dementia. Difficulties may also arise from installing modern fixtures and fittings that are not within the person’s long-term memory.
Route plans designed and tailored to client’s specific needs, e.g. using a symbol cane to aid safe orientation.
Pending ophthalmic/auditory appointments and if requiredfamiliarisation/desensitisation ‘programmes’ are devised and implemented to meet individual need. These programmes are designed to reduce levels of anxiety for the client and assist the clinician to achieve a positive outcome. Where necessary we support at these appointments.
To ensure a client tolerates spectacles or hearing aid(s) or both, similarplanned interventions (as above) are implemented.
In the sensory room the senses of touch, taste and smell can also be utilised. Calming or stimulating music (whatever the person remembers as a positive experience) can be used in this setting to promote relaxation and encourage positive behaviours and emotions.
Implementation and written outcome of the assessment/interventionsinclude future (evidenced based) planned recommendations.
Recommendations All staff working with this client group undertake specific training enabling awareness of
specific visual/hearing conditions pertinent to sensory needs and management thereof. The environment is conducive to the overall needs of the client.
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PhysiotherapyAssessment
Gait/Mobility assessment Orthotic/surgical appliances assessment/recommendations Assessment of postural management equipment needs such as standing aids, specialist
seating provision and sleep systems. Postural management to facilitate eating and drinking abilities, and improve respiratory function
Intervention Promoting mobility through physical activities, individual home mobility assessments and
group exercises Provision of walking aids and 24-hour posture management aids Promoting physical and mental wellbeing through exercise. Promoting social interactions by use of group activities Promoting the psychological benefits of physical exercise by reducing anxiety and
depression To promote physical activity to reduce the incidence of obesity, improve cardiac,
circulatory, pulmonary, bowel and bladder function Regular monitoring and updating of interventions Assist and facilitate support workers in promoting physical exercise for their clients Advice regarding manual handling as physical health needs change. Reducing the risk of falls and bone fracture through promoting muscle strength, balance
and joint range Postural management to optimise present abilities and prevent the
development/progression of secondary complications such as pain, fatigue, muscle shortening, joint deformity, respiratory complications and pressure ulcers.
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OCCUPATIONAL THERAPY (OT) Assessment
Assessment of how the persons’ Learning Disability and Dementia effects their functioning in daily living tasks and engagement in meaningful activities using detailed activity analysis.
Consider environmental design and the impact on the person. These assessments can be repeated to compare levels of functioning over time such as a
decline in skills. These assessments will be used to inform the type of support, environmental adaptations
and how activities will need to be adapted.
Interventions
Advising on types of activities that are at the right level for the individual’s strengths and abilities and that a person will be motivated and able to engage in.
Advising on how to maintain these activities to meet the person’s needs, in order to maximise fun and enjoyment therefore ensuring quality of life.
Making recommendations regarding the home environment to maximise a person’s safety and understanding of their surroundings such as considerations around sound, colour and visual prompts and advising on specific telecare systems.
Advice on moving and handling techniques and equipment required. Recommending specialist equipment to maximise Activities of Daily Living (ADL) function
such as seating, positioning, bathing, and eating and drinking. Joint working with colleagues such as Physiotherapists or SALT may be required and
redirecting to Social Services OT for major adaptations. Advising on life history and memory books to enable a person to remember and share
significant life events. Supporting families, carers and support staff to understand the effects of Dementia on a
persons’ ability to perform daily tasks.
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Community Learning Disability Nursing service.
Assessment
Collate a comprehensive health history using tools such as: The OK Health check, Individual Needs Portrayal, DSQIID
The Community Nurse will screen high risk individuals for early onset of dementia e.g. People with Downs Syndrome.
To co-ordinate and liaise with multidisciplinary Services including generic health services. Ensuring reasonable adjustments are maintained for the individual. Provide the individual with client friendly information and carry out life story work.
Intervention
Facilitate with all health services. Provide desensitisation around medical equipment/devices or environments. Complete and Provide comprehensive health assessments. Provide health action plans, care plans and hospital passports. Maintain and co-ordinate links with all services ensuring equity of care is provided, around
access to services. Medication monitoring education and provide guidance. End of life planning.
Recommendations
Provide compassion, care and support.
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Speech and Language TherapyAssessment
Assessment of communication skills and needs of the individual Assessment of eating and drinking skills-this can include observational assessment and
specialist assessment such as videofluroscopy
Intervention-Communication
Identify means of supporting the communication needs of the person with dementia through resources such as communication passports, prompt cards, memory books/boxes and visual timetables
Supporting carers to adapt and modify their communication to ensure that they have successful interactions with the person with dementia
Supporting other clients in the person’s environment to understand the changes which are happening to the person
Intervention-Eating and Drinking
Implementation of modified diets and fluids to protect airway and prevent choking and aspiration (food and fluid entering the lungs) and support adequate oral intake
Joint assessments with Physiotherapy service for assessment of chest and chest physiotherapy programmed (where possible)
Joint assessments with Occupational Therapy service to identify specialist seating, cutlery and another specialist equipment
Provide specialist training for staff and carers around understanding the swallow process and how this can be impaired in people with dementia
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Psychiatry
Assessment
The Psychiatrist is responsible for making the decision regarding mental health diagnoses; they will be reliant on the information and assessments of other professionals to assist in this process. The Psychiatrist will then decide on the most appropriate pharmacological treatment (this will be carried out in conjunction with Old Age Psychiatry).
A full history of the nature, onset and progress of the changes noticed. A detailed mental health assessment with emphasis on the assessment of cognitive changes Evaluation of the findings from the investigations (blood tests, scan, etc) already carried out by
the GP/other specialist (e.g. Neurologist).
Intervention
Giving information to carers/users regarding the diagnosis and prognosis. Management of any mental health problems Decisions regarding drug treatment of dementia in collaboration with Old Age Psychiatry Management of psychotropic medication Coordinating CPA process
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Clinical PsychologyClinical Psychologist are often involved in developing appropriate care packages and intervention plans. With the aim of enabling the individual with dementia to have the best quality of life possible and to function at their optimum level. To do this, they work with the individual with a learning disability, their family and any additional carers.
Assessment
the Clinical Psychologist will try to gather information and observe the individual in a variety of settings with the aim of developing an understanding of:
The person’s history (developmental/educational, occupational, social. Previous cognitive and adaptive functioning. Current cognitive and adaptive functioning. Recent significant changes and life experiences. Social support. The individual’s current environment. Behaviour – any changes. Mental health.
If appropriate the Clinical Psychologist might carry out Neuropsychological assessments. Such assessments provide the Clinical Psychologist with specific information about the way in which the person’s brain is functioning and how this might affect them in their everyday life. Once this information is collected, Clinical Psychologists alongside other professionals, determine whether the diagnosis of dementia would be appropriate and if not, then what service might be appropriate e.g. mental health service.
Intervention
Interventions will be based upon the assessments and will consider any issues that have been highlighted.
Interventions that may be related to a diagnosis of dementia include: Psychological wellbeing – supporting someone or being someone who has dementia can
be an emotionally difficult time. Clinical Psychology can provide a space to talk about issues/worries that might arise with the diagnosis. The individual and their carer(s) may also experience issues associated with loss, illness and disability, which may again benefit from psychological approaches (e.g. Life Story Work, Narrative Therapy).
Developing coping strategies – for client and carer(s). Challenging behaviour – sometimes people with dementia can present with behaviours that
their carer(s) struggle to manage. Clinical Psychology input can help to think about why such behaviours might be occurring and propose interventions that might help reduce behaviours.
Advise on changes to the individual’s environment. Provide specific strategies to aid the client’s memory and ability to understand the world.
To support the work, Clinical Psychologists often provide carers of the individual with a learning disability with psycho-education about the specific effects of dementia.
Overall, Clinical Psychology works in close collaboration with other services to ensure that the client and carers’ needs are met.
Social Worker
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The Care Act (2014) is designed to help people plan for their future and put them in control of the care and support they receive. It covers people living in their own home, living in a residential care home or who are carers providing unpaid care for a family of friend. There is a national eligibility criterion of care and support needs that all councils consider when assessing what help will be provided.
Councils must promote wellbeing when carrying out any of their care and support functions. They must also provide or arrange for the provision of services, facilities and resources to help prevent, delay or reduce the development of needs. This duty is to all people in their area, not just those currently with needs or who have had an assessment.
Single duty to assess and meet eligible needs. The assessment must start with a consideration of all needs and what is defined as “eligible” should include all needs that meet the national minimum regardless of whether they are being met (e.g. by a carer).
However, the council will only be under a duty to meet eligible needs that are not being met by a carer or via other informal means of support. An individual can request the council to make the arrangements to meet their eligible needs even if they have over the capital limit for financial support.
National minimum eligibility criteria for adult social care and support. The duty to assess carers where it appears, they may have a need for support remains; “carer” is now defined as an adult who provides or intends to provide care for another adult needing care (which includes practical and emotional support.) The Act introduces a duty on the council to meet a carer’s eligible needs.
Councils must establish services for providing people in their area with information and advice relating to care and support for adults and carers. This must include matters that are relevant to an individual’s financial position including how to access independent financial advice.
The Act requires that each council must make enquiries (or ensure others do so) if abuse or neglect is suspected, set up a Safeguarding Adults Board, arrange (where appropriate) for an independent advocate and co-operate with each of its relevant partners.
Joint Clinics
“A joint clinic has been set up within KMPT to meet the needs of clients with the most complex
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presentations of possible dementia.
This clinic offers joint assessment by colleagues from Community Mental Health Service for Older People (CMHSOP) and the Mental Health of Learning Disabilities (MHLD): drawing on the specialist knowledge from both services.
Each clinic involves four clinicians (a clinical psychologist and consultant psychiatrist from each of MHLD and CMHSOP) running two parallel clinics in separate rooms in the same KMPT building for an afternoon every two months. Two practitioners work together in each room: one psychologist and one psychiatrist from different specialties. Each pair assesses two clients each afternoon the clinic meets; so, four clients can be seen in each clinic.
Referrals into this specialist tertiary clinic come in via the MHLD or CMHSOP, when a joint assessment is indicated. Most clients with a mild learning disability would be seen within CMHSOP without the need for referral to the specialist clinic, unless there are additional complications in their presentation. Clients with a severe learning disability are likely to have their needs best met within the CLDT, possibly with MHLD input. This clinic is most appropriate for clients who lie between these two groups; and for clients for whom the picture of life-long cognitive difficulties and possible cognitive decline is complex.
There may be a request for a practitioner from the local team to attend the appointment at the joint clinic (often the community nurse from the CLDT). It is expected that referrals coming through CMHSOP will have been offered an initial CMHSOP assessment completed; including checking consent and capacity, risk assessment and ordering of blood tests and scans if not already ordered via GP. For some clients, the results of brain scans if ordered and attended will be available for viewing in the clinic.”
Emma Rye, Clinical Lead MHLD Psychology
Please refer to the following websites to find your local teams and information regarding the referral process and the multidisciplinary input:
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Kent Community Health NHS Foundation Trust:
https://www.kentcht.nhs.uk/service/community-learning-disability-team/
Direct referral: [email protected]
Mental Health of Learning Disabilities:
https://www.kmpt.nhs.uk/services/mhld-mental-health-of-learning-disability-services/24947
Older Peoples Services:
https://www.kmpt.nhs.uk/services/
Kent County Council:
http://www.kent.gov.uk/social-care-and-health/disability/learning-disability
Further Reading
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Cooper, S. (1997) “High prevalence of dementia among people with learning disabilities not attributable to Down’s syndrome,” Psychol Med, vol. 27, no. 3. pp. 609–616, 1997.
Ball, S.L., Holland, A.J., Huppert, F.A., Treppner, P., Watson, P. & Hon, J. (2006).Personality and behaviour changes mark the early stages of Alzheimer’s disease inadults with Down’s syndrome: Findings from a prospective population-based study.International Journal of Geriatric Psychiatry, 21, 661–673.
Ball, S.L., Holland, A.J., Huppert, F.A., Treppner, P. & Dodd, K. (2006). CAMDEX-DS:The Cambridge Examination for Mental Disorders of Older People with Down’s syndrome and Others with Intellectual Disabilities. Cambridge University Press.
Cooper, S.A. (1997). Epidemiology of psychiatric disorders in elderly compared withyounger adults with learning disabilities. British Journal of Psychiatry, 170, 375–380.
Deb, S, Hare, M, Prior, L and Bhaumik, S. (2007) “Dementia Screening Questionnaire for Individuals with Intellectual Disabilities”. British Journal of Psychiatry. 190, 440-444
Department of Health. (2013) “Making Reasonable Adjustments to Dementia Services for People with Learning Disabilities” improving Health and Lives, Learning Disability Observatory.
Department of Health, (2012) “Improving outcomes and supporting transparency: Part 1: A public health outcomes framework for England, 2013-2016.” Department of Health, London.
Department of Health, (2007) “Promoting Equality: Response from Department of Health to the Disability Rights Commission Report, ‘Equal Treatment: Closing the Gap’.” Department of Health, London.
Department of Health, (2010) “‘Six Lives’ Progress Report.” Department of Health, London.
Department of Health. (2013) “The Prime Minister’s Challenge on Dementia” Delivering major improvements in dementia care and research by 2015.
Department of Health, “Valuing People Now: Summary Report March 2009 - September 2010. Good Practice Examples.” Department of Health, London, 2010.
Department of Health, (2009) “Valuing People Now: The Delivery Plan.” Department of Health, London.
Department of Health, (2009) “Valuing People Now: A new three-year strategy for people with learning disabilities,” Department of Health, London.
Disability Rights Commission, (2006) “Equal Treatment - Closing the Gap,” Disability Rights Commission, London.
Emerson, E, Baines, S, Allerton, L, and Welch, V. (2012) “Health Inequalities & People with Learning Disabilities in the UK: 2012,” Improving Health & Lives: Learning Disabilities Observatory, Durham.
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Emerson, E, Hatton, C, Robertson, J, Roberts, H, Baines, S, Evison, F, and Glover, G. (2012) “People with Learning Disabilities in England: 2011.” Improving Health & Lives: Learning Disabilities Observatory, Durham.
Emerson, E, and Heslop, P, (2010) “A Working Definition of Learning Disabilities.” Improving Health & Lives: Learning Disabilities Observatory, Durham, 2010.
Glover, G, and Ayub, M. (2010) “How People with Learning Disabilities Die.” Improving Health & Lives: Learning Disabilities Observatory, Durham.
Government Equalities Office, “Equality Act 2010: What do I need to know? A summary guide for public sector organisations,” HM Government, London, 2010.
Government Equalities Office, “Equality Act 2010: What Do I Need to Know? Disability Quick Start Guide.” Government Equalities Office, London, 2010.
Hatton, C, Roberts, H, and Baines, S. (2011) “Reasonable adjustments for people with learning disabilities in England 2010: A national survey of NHS Trusts,” Improving Health & Lives: Learning Disabilities Observatory, Durham.
Janicki, M.P. & Dalton, A.J. (2000). Prevalence of dementia and impact on intellectualdisability services. Mental Retardation, 38, 276–288.
Jervis, N and Prinsloo, L. (2008) “How we developed a multidisciplinary screening project for people with Down’s syndrome given the increased prevalence of early onset dementia,” British Journal of Learning Disabilities, vol. 36, pp. 13–21.
Jokinen, N, Janicki, M, Keller, S, McCallion, P, and Force, L. (2013) “Guidelines for Structuring Community Care and Supports for People with Intellectual Disabilities Affected by Dementia,” Journal of Policy and Practice in Intellectual Disabilities, vol. 10, no. 1, pp. 1–24.
Mencap, (2012) “Death by indifference: 74 deaths and counting. A progress report 5 year on,” Mencap, London.
Messent, P. (1996) “The contribution of physical activity and exercise to quality of life of adults with learning disabilities. [electronic resource]”.
Michael, J. (2008) “Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities,” Independent Inquiry into Access to Healthcare for People with Learning Disabilities, London, 2008.
Morin, D, Merineau-Cote, J, Ouellette-Kuntz, H, Tasse, M, and Kerr, M. (2012) “A comparison of the prevalence of chronic disease among people with and without intellectual disability,” Am J Intellect Dev Disabil, vol. 117, no. 6, pp. 455–463.
O’Hara, J, McCarthy, J and Bouras, N. (2010) “Intellectual Disability and Ill Health.” Cambridge University Press, Cambridge.
Parliamentary and Health Service Ombudsman and Local Government Ombudsman, “Six lives: the provision of public services to people with learning disabilities,” Parliamentary and Health Service Ombudsman and Local Government Ombudsman, London, 2009.
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Prasher, V. (1995) “Overweight and obesity amongst Down’s syndrome adults,” J Intellect Disabil Res, vol. 39 (Pt 5), pp. 437–441.
Richards, D. (2007) “Behaviour change guidance. National Institute for Health and Clinical Excellence,” Evid Based Dent, vol. 8, no. 4. pp. 98–100.
Straetmans, J, Van Schrojenstein Lantman-de Valk, H, Schellevis, F, and Dinant, G. “Health problems of people with intellectual disabilities: the impact for general practice.,” The British journal of general 25 Operated by Public Health England
Strydom, A, Chan, T, King, M, Hassiotis, A and Livingston, G. (2013) “Incidence of dementia in older adults with intellectual disabilities.,” Research in developmental disabilities, vol. 34, no. 6, pp. 1881–5, Jun.
Royal Collage of Psychiatrists. (2009) “Dementia and People with Learning Disabilities” Guidance on Assessment, Diagnosis and Support pf people with learning disabilities who develop dementia.
Easy Read and information for Parents and carers
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Alzheimer’s Society
http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1763
Bild
http://www.bild.org.uk/our-services/books/health-and-well-being/about-my-friend/?p=1
Department of Health
http://www.improvinghealthandlives.org.uk/uploads/news/vid_19037_RA%20Dementia1908Final%20LD%20edit%20docxPHE-2013179.pdf
Down Syndrome Association
http://www.downs-syndrome.org.uk/images/documents/1090/2_Alzheimer’s_Disease.pdf
http://www.downs-syndrome.org.uk/images/stories/DSA-resources/health/HealthBookPages/Annual%20Health%20Checks%20Check%20List.pdf
http://www.downs-syndrome.org.uk/images/stories/DSA-resources/health/HealthBookPages/Health%20Book.pdf
Down ’s Syndrome Scotland
http://www.dsscotland.org.uk/resources/shop
http://lx.iriss.org.uk/sites/default/files/resources/Keep%20Talking%20About%20Dementia.pdf
http://www.dsscotland.org.uk/resources/shop/whatisdementia
Easy Health.org.uk
http://www.easyhealth.org.uk/listing/dementia-(leaflets)
http://www.easyhealth.org.uk/sites/default/files/appointment_card.pdf
http://www.easyhealth.org.uk/sites/default/files/Dementia%20and%20people%20with%20learning%20disabilities.pdf
http://www.easyhealth.org.uk/sites/default/files/Dementia.pdf
http://www.easyhealth.org.uk/sites/default/files/Plan%20for%20Downs%20Syndrome%20and%20Dementia.pdf
http://www.easyhealth.org.uk/sites/default/files/Supporting%20people%20with%20learning%20disabilities%20with%20medication%20prescribed%20for%20dementia.pdf
Equally Well Team NHS Gramian Trust
http://www.ohb.scot.nhs.uk/images/pdf/Easy%20Read%20Resource%20List[1].pdf
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Kent and Medway NHS Social Care Partnership Trust
http://www.kmpt.nhs.uk/Downloads/Understanding-Mental-Health/leaflets/Dementia-Easy-Read.pdf
Maclntyre
http://www.improvinghealthandlives.org.uk/securefiles/140422_1529//Dementia%20Hot%20Tips%202013.pdf
Royal College of Nursing – links
https://www.rcn.org.uk/development/practice/dementia/supporting_people_with_dementia/learning_disabilities
South West London and st George Mental Health Trust
http://www.swlstg-tr.nhs.uk/_uploads/documents/publications/leaflets-for-service-users-carers-and-professionals/easy-read-leaflets/dementia_easy_read.pdf
Supporting Derek information DVD resource.
http://www.pavpub.com/supporting-derek/
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