Dementia, Down syndrome and learning disabilities

One thing we know about dementia is that it does not discriminate – it is an equal opportunity disease. Alzheimer’s disease is the most common form of dementia in the general population. It is also the most common form of dementia in people with Down syndrome. The difference for people with Down syndrome is that it occurs more frequently and at a younger age than in the general population*. Our post today focuses on resources about Down syndrome, learning disabilities and dementia.

Book: Intellectual Disability and Dementia: research into practice, edited by Karen Watchman, 2014

intellectual disability and deme

Presenting the most up-to-date information available about dementia and intellectual disabilities, this book brings together the latest international research and evidence-based practice, and describes clearly the relevance and implications for support and services

Internationally renowned experts from the UK, Ireland, the USA, Canada, Australia and the Netherlands discuss good practice and the way forward in relation to assessment, diagnosis, interventions, staff knowledge and training, care pathways, service design, measuring outcomes and the experiences of individuals, families and carers. The wealth of information offered will inform support and services throughout the whole course of dementia, from diagnosis to end of life. Particular emphasis is placed on how intellectual disability and dementia services can work collaboratively to offer more effective, joined up support.

Practitioners, managers and commissioners will find this to be an informative resource for developing person-centred provision for people with intellectual disabilities and dementia and their families. It will also be a key text for academics and students who wish to be up-to-date with the latest research and practice developments in this field.

This book is available for loan to members of our library.

Report: Dementia and People with Learning Disabilities: Guidance on the assessment, diagnosis, treatment and support of people with learning disabilities who develop dementia by The British Psychological Society and the Royal College of Psychiatrists  (2009)dementia_&_people_with_learning_disabilities

This report, which can be downloaded for no cost,  is the result of a joint working group of the Learning Disability Faculty of the British Psychological Society and the Royal College of Psychiatrists.

The main purpose of the report is to enable those working in clinical and social care services to improve the quality of life of people with learning disabilities who develop dementia, by providing guidance to inform assessment, diagnosis, treatment and support. The guidance is aimed at clinicians in learning disability and older peoples’ mental health services and services for younger people with dementia.

The constraints of time and practicality have meant that it has not been possible to produce a report that addresses every aspect of dementia in people with learning disabilities. Our main focus has been to highlight the key factors that we consider are the elements of an excellent service, and to help those working in services evaluate how they might help the increasing numbers of people with learning disabilities who are developing dementia given improvements in life-expectancy.

About dementia cover 413x589Book: About dementia: for people with learning disabilities by Karen Dodd, Vicky Turk and Michelle Christmas  (2005)

This book is specifically designed for people with learning disabilities. It explains dementia in simple, appropriate language and answers common questions.

About my friend cover 411x615Book: About my friend: for friends of people Down’s syndrome and dementia by Karen Dodd, Vicky Turk and Michelle Christmas with illustrations by Keith Jones  (2005)

This illustrated booklet describes the dementia process and helps people with a learning disability understand what happens when a friend gets dementia. It explains the changes that may occur and offers advice about people who can help. Another resource specifically designed for those with learning disabilities.

Book: Down’s syndrome and dementia : a resource for carers and support staff by Dodd, Karen  (2009)

Down syn dementia _bild_webA resource book for family carers, staff and other professionals to help them care more effectively for people with Down’s syndrome and dementia.

The book focuses on practical day-to-day issues, including:

– supporting the person with Down’s syndrome and dementia to maintain skills and independence in every way and for as long as possible
– understanding and responding appropriately to changes in behaviour during the early, middle and late stages of dementia
– improving the confidence of carers to look after individuals.

Film: What is happening to my friend Mary?

This is an education and training video which, together with the handbook, forms a package designed to help people who have an intellectual disability understand what happens when a friend or family member has Dementia or Alzheimer’s disease.  The package has been developed in response to the recognition that it is difficult for people with an intellectual disability to understand the changes they may see in friends or family members if they develop dementia. It uses feature actors who have Down’s syndrome.

Note: this is an older resource and the production style and attire of the actors is decidely retro, but still plenty of good content which may help a person with a learning disability understand more about dementia.

Report: Down Syndrome and Alzheimer’s disease, Alzheimer’s Australia, Down Syndrome Australia and the Centre for Developmental Disability Health Victoria (CDDHV).

DS and dementiaDown syndrome is the most common cause of intellectual disability and occurs across all races and cultures. Down syndrome is associated with a wide range or health issues. This booklet will help you understand the relationship between Down syndrome and Alzheimer’s disease. Alzheimer’s disease is the most common form of dementia in the general population. It is also the most common form of dementia in people with Down syndrome. The difference for people with Down syndrome is that it occurs more frequently and at a younger age than in the general population. This report addresses common questions about Down syndrome and Alzheimer’s disease.

Article: The needs of people with learning disabilities who develop dementia: A literature review, Penny Llewellyn, Dementia, 2011

dementia journalPeople with learning disabilities are living longer and are increasingly developing age related conditions including dementia. If this occurs, their medical and social needs pose many challenges for services. A literature review was undertaken of articles published between 1996— 2006. Data was collected relating to the needs of people with learning disabilities and dementia, their carers and their peers. The primary medical need is for timely and accurate diagnosis. There is a multitude of diagnostic tools and advice is available as to which are most suitable for different client groups. The needs of carers are intertwined with those of people with learning disabilities and dementia and meeting their needs for education, training and increased staff numbers, has proved beneficial. Although multiple services will be responsible for the needs of this client group, there is a consensus that learning disability services should be at the heart of service provision.

Article: Coping with dementia and older families of adults with Down syndrome, Matthew P. Janicki, Anna Zendell, Kathleen DeHaven, Dementia, 2010

The authors studied a group of older carers of aging adults with Down syndrome (DS) to ascertain what effects such caregiving may have on them given the presence or possibility of age-associated decline or dementia. The study also examined the comparative levels of care provided, key signs noted when decline was beginning, the subjective burden experienced, and what were the key associated health factors when carers faced a changed level of care. The authors found that this group was made up of long-term, committed carers who have decided early on to look after their relative with DS over their lifetime. When faced with the onset and ongoing progression of dementia, their commitment was still evident as evidenced by adopting physical accommodations and finding ways to continue to provide care at home, while also seeking help from outside sources. Most saw a family or group home environment as the place of choice for their relative with DS when they decided they could no longer offer care. The study did not ascertain any burn-out or significant health related problems associated with their continued caregiving save for their concerns about day-to-day strain and what will happen in the future.

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* excerpt from Down syndrome and Alzheimer’s disease, Alzheimer’s Australia, Down Syndrome Australia and the Centre for Developmental Disability Health Victoria (CDDHV).

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