Resources on Alzheimer's Disease and Dementias

Background Information

Fast Facts

Some quick information about Alzheimer's disease and how it affects people with intellectual disabilities.

State of Science on Dementia

A report on the State of Science on Dementia in older adults with Intellectual Disabilities by the IASSID Special Interest Research Group on Ageing and Intellectual Disabilities. (March 2009)

The Arc of the US's Fact Sheet on Alzheimer's Disease and People with Intellectual Disabilities

A detailed fact sheet on the nature of Alzheimer's disease and people with intellectual disabilities -- issued by the Arc of the US and containing information of interest to the United States.

Alzheimer's Disease International's Fact Sheet on Dementia and Intellectual Disabilities

A detailed fact sheet on Alzheimer's disease and people with intellectual disabilities developed for Alzheimer's Disease International and written from an international perspective. A .pdf file, requiring Acrobat Reader, is attached. This fact sheet was developed for use by Alzheimer's International by Dr. Heather Wilkinson of the University of Edinburgh, Dr. Matthew Janicki of the University of Illinois at Chicago, and Dr. Arthur Dalton of the NYS Institute for Basic Research. It is also available on ADI's website at

A Spanish version of the file is also available at

Edinburgh Principles

Internationally acknowledged community care management principles and recommendations -- issued by the International Association for the Scientific Study of Intellectual Disabilities.

Take a quiz on dementia and intellectual disabilities

20 questions to test your knowledge of some basics on dementia and people with intellectual disabilities.


Working bibliography on dementia care and intellectual disabilities
An extensive annotated bibliography compiled by the University of Illinois at Chicago on books, manuals, videos, journal articles and reports of relevance to community care management of adults with intellectual disabilities affected by dementia.

Links to organizations
Relevant and helpful organizations concerned with Alzheimer's disease and intellectual disabilities.

Links to the AAMR/IASSID dementia reports
PDF versions of the original four AAMR/IASSID reports on care management, epidemiology, diagnostics, and tests/assessments related to dementia and people with intellectual disabilities.

Assessment Instruments
Source information for obtaining commonly used instruments used to assess presence of dementia in adults with intellectual disabilities.

Recording Behaviors for Dementia Assessment
Protocol developed for agencies interested in video or digital recording of functional status of adults with Down syndrome at risk of

Meetings, conferences, workshops
Listing of upcoming events of relevance on the topic of dementia and intellectual disabilities.

Information about the Preparing Community Agencies for Adults Affected by Dementia Project (PCAD Project) Precis about the NIDRR funded research project on how community agencies adapt their services for adults with intellectual disabilities.


The Arc Booklet on Alzheimer's Disease
The Arc has issued a family/staff oriented booklet on Alzheimer's disease and developmental disabilities. The booklets can
be purchased from The Arc -- go to The Arc - and type in "dementia" in the SEARCH box.

What Is Dementia? - A Booklet about Dementia for Adults Who Have a Learning Disability
Booklet issued by Down Syndrome Scotland for use by persons with limited intellectual abilities explaining
dementia and basic care issues. A companion booklet on what is death, using the same format, is also available.
Copies may be obtained from: (Down's Syndrome Scotland, 158/160 Balgreen Road, Edinburgh, Scotland EH11
3AU) or one can be downloaded by clicking below

Download booklet - What is Dementia?.pdf

Download booklet - Food for Thought.pdf

Download booklet - Let's Talk about Death.pdf

Down Syndrome and Alzheimer's Disease -- A Resource List
Compendium of useful references on Down syndrome and Alzheimer's disease issued by the Alzheimer's Association in Chicago, Illinois (USA).