Dementia - learning disabilities

On this page you will find resources that support best practice for people with dementia who have learning disabilites.

In other sections of the website you can also:

Resources are arranged under the following headings:

The resources below were last accessed on 15 June 2015. Some of them are in PDF format - see how to access PDF files.

Resources and tools

Alzheimer's Society: Learning disabilities and dementia
This factsheet on learning disabilities and dementia includes practical strategies which have been developed to support people with dementia and their carers. See also: Dementia: drugs used to relieve depression and behavioural symptoms

British Institute for Learning Disabilities (BILD)
This national charity produces a range of publications on learning disabilities and dementia including ‘Down’s syndrome and dementia’ (for professionals), ‘About dementia’ (for people with learning disabilities) and ‘About my friend’ (for friends of people with Downs’s syndrome and dementia).

Centre for Research on Families and Relationships (CRFR) (2006) Best practice in learning disability and dementia: getting service user views (PDF 675KB)
This publication reports on a three-year research project that explored best practice for people with a learning disability who develop dementia. It also looked at what enables people to remain in their own homes and communities.

Centre for Research on Families and Relationships (CRFR) (2004) Growing older with a learning disability and dementia (PDF 620KB)
This briefing brings together the findings from several studies in order to report on the importance of families and relationships in the lives of people with a learning disability, who are growing older and experiencing dementia.

Down's Syndrome Association: Ageing and its consequences for people with Down’s syndrome (PDF 398KB)
This booklet aims to highlight some of the issues, including dementia, that may prove particularly relevant to people with Down’s syndrome and to their parents and carers as they get older.

Down's Syndrome Association: Down’s Syndrome and Alzheimer’s Disease A Guide for Parents and Carers (PDF 311KB)
This booklet reviews the specific association between Down’s syndrome and the risk of Alzheimer’s disease in later life and discusses treatment and support strategies for later life.

Jenny's Diary. A resource to support conversations about dementia with people who have a learning (intellectual) disability. Jenny’s Diary is a free booklet and a set of postcards aimed at supporting conversations about dementia with people who have a learning (intellectual) disability. Currently there is limited guidance on how to explain dementia to an individual with a learning disability. 

Joseph Rowntree Foundation (2008) Do you recognise pain in someone with a learning difficulty and dementia?
This 2004 report by the Joseph Rowntree Foundation explores the findings of a study that looked at the key issues relating to people with learning difficulties with dementia living in care home settings. The report includes some examples of best practice in care home provision.

Learning (Intellectual) Disability and Dementia
This website will help those interested in finding out more about dementia in people with a learning (intellectual) disability.

Royal College of Psychiatrists (2009) Dementia and people with learning disabilities: guidance on the assessment, diagnosis, treatment and support of people with learning disabilities who develop dementia
This report 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 focus of the report is on highlighting the key factors that are considered 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.

SCIE Dementia gateway: Learning disabilities and dementia
This section of the Dementia Gateway, which brings together tools, activities and practical tips, includes areas on: learning disabilities, dementia and the environment; what proportion of people with a learning disability develop dementia; recognising early changes; issues that may arise with getting a diagnosis;; why design matters and other health needs to consider for people with learning disabilities.

Stories and good practice examples  

Joseph Rowntree Foundation (2010) Supporting Derek - a new resource for staff working with people who have a learning difficulty and dementia
This resource pack published by the Joseph Rowntree Foundation in partnership with the University of Edinburgh, is aimed at staff supporting people with learning difficulties who develop dementia. You can view an extract from Part 1 of the accompanying DVD.


For relevant standard statements and associated guidance see:

NICE quality standards: Dementia Quality Standard
See Statement 4.

Scottish Government: Standards of care for dementia in Scotland
As a person with dementia:
I have the right to be regarded as a unique individual and to be treated with dignity and respect.

For overarching resources and resources on other specific aspects of care see Supporting people with dementia.