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).

Dementia and Driving

driving_picDriving is something most adults take for granted.  It gives us freedom, flexibility and independence. In a vast land like Australia, with our luxury of space, driving is also a necessity for many of us. We need to drive for practical purposes, like grocery shopping and also for social purposes, to see friends and family.

Now. Imagine receiving a diagnosis of dementia. Then in the days and weeks that follow, as you struggle to adjust to this new reality, imagine the people who care for you, or medical professionals, suggesting to you that you can no longer drive. Another body blow at an already fraught and devastating time.

The decision about when to stop driving is a difficult one and needs to be approached with sensitivity and the involvement of the driver with dementia. Today, we offer you a range of resources which may help you have this discussion with someone with dementia as well as providing you with more information on driving with dementia. This post is a guest blog by Alzheimer’s Australia Vic resident Driving and Dementia specialist, Lucy Foley. You can read more about Lucy’s professional background and Alzheimer’s Australia Vic’s Driving and Dementia project at the end of this post.

YouTube: Driving with Dementia, Professor Joseph Ibrahim

This utterly compelling animated short film explores the myriad practical, emotional and social implications of asking a person with dementia to stop driving.  Professor Joseph Ibrahim provides great insight to medical professionals, carers and concerned family members about what surrendering driving privileges really means.

Discussion paper: Dementia and Driving in Victoria, Alzheimer’s Australia Vic

AAV_Dem_DriveWith the increasing age of the population, and the subsequent increase in prevalence of dementia, there will be a growing number of older drivers who will experience impaired driving ability. However, although there is evidence that dementia increases crash risk(1), it is also internationally accepted that not all people with dementia are incompetent drivers, particularly in the early stages of the condition.(2)

The ability to drive safely relies on memory, attention, decision-making, planning, reactions,vision and other sensory processing and these will be affected to various degrees.(3) Each person’s experience of dementia is individual.

This paper presents the results of a survey with 139 family carers and friends of people with dementia, and 19 people with dementia. It describes their awareness of VicRoads regulations in relation to dementia, experience with on road driver testing, impact of ceasing driving, and on alternative mobility options.

Footnotes 1, 2, 3 refer to page 1 – Executive Summary of Dementia and Driving in Victoria, April 2013.

Article: Dementia and the impact of not driving, Kate Swaffer


Kate Swaffer, image source: Australian Journal of Dementia Care

Kate Swaffer, a person living with Younger Onset Dementia discusses one of the key issues around driving and dementia. Everyone agrees that there is a need to stop driving at some point after diagnosis of dementia, the harder question to answer is, when?

Kate’s honest and engaging piece offers real insight into the stresses and regret of giving up driving, whilst retaining a clear-eyed perspective on the impacts driving and dementia can have for the broader community.

This article is sourced from the Australian Journal of Dementia Care website.

Booklet: Driving, Dementia and Mobility, RACV

RACVDriving_DementiaA comprehensive and clearly written booklet for people with dementia, carers and health professionals in Victoria.  This helpful guide covers all the basics including legal and licensing requirements, what do after a diagnosis, strategies for staying mobile and connected after stopping driving. It also includes contact information for different services and support available for people with dementia who are still driving, and those who are no longer driving.

You can order up to 10 copies of the print version of this booklet by contacting Alzheimer’s Australia Vic Helpline on 1800 100 500, if you require more than 10 copies, please contact RACV directly.

YouTube: RACV Dementia, Driving and Mobility Guide

This 2 minute video is a great introduction to the booklet listed directly above.

Website: VicRoads

VicRoadsPeople with dementia, particularly in the early stages of dementia, can be capable drivers, however, because of the nature of the condition, at some stage they will need to stop.  The VicRoads website includes information about what you need to do after a diagnosis of dementia, specifically, the legal and licensing requirements.

The website also outlines the medical review process, which is how VicRoads determine a person’s fitness and ability to keep driving.

Finally, you can also access information about Occupational Therapy Driver Assessments, and contact details for Occupational Therapists via VicRoads.

Resource: At The Crossroads, The Hartford


A great guide for people with dementia and carers.  This publication is written sensitively and thoughtfully and encourages early planning and a person-centered approach to decision-making on when to stop driving.  At the Crossroads focuses on the emotional challenges of license loss and mobility loss and provides excellent resources for people to work out individualised strategies and solutions for dealing with these challenges.

About the Project

Alzheimer’s Australia Vic are working in partnership with RACV on a 2 year driving and dementia community education and awareness-raising project. The project aims to support people living with dementia and their families and carers to make informed decisions about the current and future driving ability of a person living with dementia, and make a successful transition to non-driving.  The project is launching a kit in February 2014, which will have a range of resources for people with dementia, carers, families and health workers. The project will also be delivering community information sessions on driving and dementia throughout metro and regional Victoria from March 2014 onwards. We will release information about how to obtain the kit, or attend an information session closer to our launch date so keep an eye on the website.

About our guest blogger

Lucy Foley, Alzheimer’s Australia Vic’s Project Officer for Driving and Dementia, is a social worker with a background in community development, who is interested in transport and mobility. Lucy can be contacted about the project via our main phone number 03 9816 5799. If anyone wants to talk about driving and dementia issues they are currently experiencing themselves or with a loved one please phone the National Helpline on 1800 100 500.

Younger Onset Dementia

Younger Onset Dementia describes any form of dementia that has an onset of symptoms before age 65. It currently affects 24,000 Australians*.  Dementia can develop at any age, but a lack of awareness and understanding, even among health professionals, means that people with younger onset dementia are often misdiagnosed and face even longer delays in getting a diagnosis of dementia.

In our publication Younger Onset Dementia: A New Horizon? (2013) Alzheimer’s Australia make the observation that even with a diagnosis, there are few services designed to provide appropriate care and social support for younger people and their carers. Individuals with younger onset dementia face a unique set of challenges with changing financial circumstances, limited access to appropriate services, new social challenges and often too frequently fundamental changes to their relationships with family and friends**.

I think, dear readers, that one of the nicest things about the internet is that it gives us all the opportunity to share our experiences, thoughts and insights. Today we’ve pulled together resources on Younger Onset Dementia and hope that you find these as useful, thought-provoking and touching as we did.

YouTube short film: The Music in Hugh: A Look at Young Onset Dementia

In this completely gorgeous short documentary, son Max talks about the impact of younger onset dementia on his father, himself and his family.  Max shares his experience with touching candor and very importantly has found a way to reconnect with his father through music. Max’s thoughtful narrative on the importance of seeing his father as a person, not a patient or collection of symptoms is inspiring.

Fiction: Still Alice, L. Genova

Still AliceStill Alice is a fictional account of Alice Howland, a Harvard professor, she has a successful husband and three grown children. When she begins to grow forgetful, she dismisses it for as long as she can, but when she gets lost in her own neighbourhood she knows that something has gone terribly wrong. She finds herself in the rapidly downward spiral of Alzheimer’s Disease. She is fifty years old. Suddenly she has no classes to teach, no new research to conduct, no invited lectures to give. Ever again. Unable to work, read and, increasingly, take care of herself, Alice struggles to find meaning and purpose in her everyday life as her concept of self gradually slips away. But Alice is a remarkable woman, and her family, yoked by history and DNA and love, discover more about her and about each other, in their quest to keep the Alice they know for as long as possible. Losing her yesterdays, her short-term memory hanging on by a couple of frayed threads, she is living in the moment, living for each day. But she is still Alice.

Book cover Coping with Early-onset Dementia Guidebook: Coping with Early-onset Dementia, J. Eckersley

This is a helpful, no-nonsense guide Coping with Early-onset Dementia to confronting, accommodating and planning ahead for younger people with dementia. As well as acknowledging the special challenges facing people with younger onset dementia this guide also emphasises that there is still life to be lived, for both those with dementia and their carers. Topics covered include:

  • types of dementia, including Alzheimer’s disease
  • managing dementia on a day-to-day basis and dealing with common problems
  • obtaining support that is appropriate for younger people with the condition
  • treatments and new drugs in the pipeline
  • dealing with practical issues, such as work, driving and obtaining benefits
  • support for families, carers and children
  • care as the condition progresses – day centres, respite care and residential care
  • the relationship between dementia and genetics
  • complementary therapies
  • further resources

Memoir: Jan’s story : love lost to the long goodbye of Alzheimer’s, B Peterson

JansStoryJan Petersen was vibrant, active, healthy, and just 55 when she was diagnosed with Alzheimer’s. Barry was not even slightly prepared for what happened to her, and how it would impact his life when “forever” suddenly and terrifyingly has an expiration date. Jan’s Story is a very personal memoir on the impact of younger onset dementia.

DVD: Reflections: John & Yolanta : experiencing younger onset dementia

Reflections DVDJohn was an elite air force pilot who was diagnosed with Alzheimer’s disease at 52. In this DVD, John, his wife Yolanta and friend Dave chronicle the impact of John’s diagnosis upon their relationships and lives. Reflections: John & Yolanta: Experiencing Younger Onset Dementia is suitable for the families of people diagnosed with dementia at a younger age, and deals with many of the issues other families in a similar situation may face. The DVD is also relevant for health professions, as it highlights the complexity of life with younger onset dementia, and raises awareness about the particular issues affecting younger people.

Sign up: HOPE – Younger Onset Dementia newsletter, Alzheimer’s Australia

HOPE is Alzheimer’s Australia’s national newsletter for younger people with dementia, their care partners, family and friends, health professionals, care staff and everybody with an interest in younger onset dementia.  Take a look at our website page for HOPE where you can access previous editions and/or sign up for the newsletter by emailing

Other information on Younger Onset Dementia

Younger onset dementia factsheets, Alzheimer’s Australia

Younger onset dementia tip sheets, Alzheimer’s Australia

Younger onset dementia forum, Alzheimer’s Australia

In our own words : younger onset dementia : a collection of very personal stories, Alzheimer’s Australia

The Long and Lonely Road: Insights into living with Younger Onset Dementia, Alzheimer’s Australia

Garry’s Dream, The Lovell Foundation  – The Lovell Foundation and Alzheimer’s Australia Vic have set an objective to promote the development of a quality long term accommodation facility for people diagnosed with Younger Onset Dementia.

Younger Onset Dementia and Me blog, AANSW blog – a place for young people with parents with younger onset dementia to connect with others, to get information and helpful suggestions and a place to be listened to.

When Dementia is in the House website, Dr T Chow and K Nichols  – Dementia resources for parents and teenagers

Younger people with dementia factsheet, Alzheimer’s Society UK

* Australian Institute of Health and Welfare (2012) Dementia in Australia.

** Alzheimer’s Australia (2013) Younger Onset Dementia: A New Horizon?