Topic guides: Down syndrome and dementia: Content

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Dementia Australia resources

Down Syndrome and Dementia
In this video Dr Sushmita Hunter, a psychiatrist and psychogeriatrician, discusses Alzheimer's disease and how this form of dementia may present differently for people with Down syndrome. The process and challenges of diagnosis are explored and strategies to recognise and manage dementia, including important considerations and questions to ask.

Down syndrome and Alzheimer’s disease by Dementia Australia
What is currently known of the link between Down syndrome and Alzheimer’s disease and information about where to find additional support.
The Dementia Guide by Dementia Australia
Publication Date: 2024; edited 2025

For people living with dementia, their families and carers. The Dementia Guide is an important resource for any person impacted by any form of dementia, of any age. This resource contains information about the impact dementia may have on a person, the treatment, support and services they may need. It is available to read online, download as a pdf, listen to an audio version or request a print copy.
The Younger Onset Dementia Guide by Dementia Australia
Publication Date: 2025

The Younger Onset Dementia Guide is for anyone impacted by younger onset dementia. The information in this guide is divided into four parts. Part 1: About dementia and younger onset dementia, Part 2: Supports, services, and advice, Part 3: Support and information for carers and family members., Part 4: Useful tools.

Books

Down Syndrome and Dementia: A Guide for Families by Jennifer Torr
Publication Date: 2018

Many people are not aware that there is a link between Down syndrome and dementia. People with Down syndrome are more likely to get dementia and on average at a younger age than other people in the population. While this may be confronting to know, it is also helpful to understand the links between health and lifestyle so that you can take action to reduce the risk of dementia, recognise the signs of dementia, and do what you can to support a person with Down syndrome if they do develop dementia.
Down’s syndrome and dementia. A resource for carers and support staff. by Karen Dodd
Publication Date: 2009

A resource book for family carers, staff and other professionals to help them care more effectively for people with Down’s syndrome and dementia.
About my friend: for friends of people with Down's syndrome and dementia
Publication Date: 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.
Large print text.
Intellectual Disabilities and Dementia by Karen Watchman
Publication Date: 2017

Drawing on the author's first-hand experiences with families, this book provides crucial, accessible information and answers the difficult questions that often arise when a family member with an intellectual disability is diagnosed with dementia. Linking directly to policy and practice in both dementia and intellectual disability care, this book takes an outcome-focussed approach to support short, medium and long-term planning. With a particular emphasis on communication, the author seeks to ensure that families and organisations are able to converse effectively about a relative's health and care.
Intellectual Disability and Dementia by Karen Watchman (Editor)
Publication Date: 2014

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.
Supporting people with learning disabilities and dementia by Karen Watchman, Heather Wilkinson and Philly Hare
Publication Date: 2018

As people who have a learning disability grow older, we need to ensure that support and services are geared towards meeting changing physical and mental health needs. The main objective of the guide is to promote holistic support that will maintain the abilities of the person with a learning disability and dementia and provide services that meet their individual needs.

Alzheimer’s Disease & Down Syndrome A Practical Guidebook for Caregivers by National Down Syndrome Society
Publication date: 2018
The risk of dementia in adults with Down syndrome can stir deep feelings of fear and anxiety for family, friends, and caregivers who are otherwise trying to focus on supporting and celebrating a healthy and fulfilling adult life for an individual that they love. Education is one way to reclaim some power over a situation where it is impossible to have total control. This booklet was created to help empower families and caregivers with knowledge about the connection between Down syndrome and dementia, suggestions about how to carefully and thoughtfully evaluate changes that may be observed with aging, and guidance about how to adapt and thrive within an ever-changing caregiving role when a diagnosis is made.

Let’s talk about dementia: A booklet about dementia for adults with Down’s syndrome by Down’s Syndrome Scotland
Publication date: 2024
A booklet about dementia for adults with Down’s syndrome by Down’s Syndrome Scotland.

About dementia: for people with learning disabilities
Publication Date: 2005

This booklet for people with learning disabilities describes dementia in easy-to-understand language and provides answers to commonly asked questions. Large print text

Video content

Journal articles and reports

Dementia in people with Down syndrome: What does the research tell us? (2017)
By Dr Liz Evans and Tanya Duckworth
Hidden in plain sight: dementia and learning disability (2018)
This UK report highlights how more that a million of people with learning disabilities have become invisible in national dementia policy.
People with a learning disability are three times more likely to develop dementia than the rest of the population. But a review of current government strategy has revealed that their needs are barely mentioned.
Hidden in plain sight: dementia and learning disability. (2018, April 26). Foundation for People with Learning Disabilities.

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Stand by Me Research Report: Experiences of couples with a learning disability when one partner has dementia
This research provides the first known evidence of the experiences of couples with a learning disability when one partner has a diagnosis of dementia. The idea for the research came from a married man with a learning disability, Andrew, who had a diagnosis of dementia in 2019. His fears were about what it meant to have dementia, what changes he may experience and how quickly, and how his relationship with his wife might be affected.
Watchman, K., Jacobs, P., Wilkinson, H., & Hoyle, L., (2023) Stand by Me: Enhancing the sustainability of relationships and support among people with a learning disability and dementia – Project report. University of Stirling: Scotland.

Websites and resources

Down Syndrome Australia website
Visit the resource hub and filter results by category - Dementia for further information and resources.
Down's Syndrome Association (UK)
Offers resources for families and carers of people living with Down Syndrome and dementia, such as webinars and guidebooks.

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