SOME RESOURCES ON INTELLECTUAL DISABILITIES AND DEMENTIA

by Philip McCallion & Mary McCarron

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Many of these resources are free, others will be forwarded for the cost of duplication and postage and some can be downloaded directly from the websites noted. There are also a variety of books and journal articles on intellectual disabilities and dementia and even greater availability of material specifically on dementia. Contacts with local chapter and affiliates of the Alzheimer’s Society or Alzheimer’s Association are particularly recommended.

Booklets and Written Materials

Alzheimer’s Disease and people with intellectual disability: Common questions and concerns.
A booklet for families developed by Mary McCarron, Ph.D. for NAMHI. The National Association for the Mentally Handicapped of Ireland, 5 Fitzwilliam Place, Dublin 2, Ireland.

Developmental disabilities and Alzheimer’s Disease . . . What you should know
A booklet for family members and staff.developed by Matthew P. Janicki, Ph.D. for the Arc of the United States and available at:www.thearc.org and www.uic.edu/orgs/rrtcamr/dementia.

What is dementia?
What is death?
Pamphlets created by the Scottish Down’s Syndrome Association to use with adults with intellectual disabilities. Download at www.uic.edu/orgs/rrtcamr/dementia

Alzheimer’s Disease and intellectual disabilities (Down Syndrome): A toolkit.
Created by Philip McCallion, Ph.D. and Matthew P. Janicki, Ph.D., the toolkit consists of

  • A video and CD-ROM, ‘Dementia and people with intellectual disabilities: What can we do?’
  • A two CD-ROM self-instructional in-service and education kit.
  • Fact sheets and other informational sheets issued by Alzheimer Disease International; The ARC of the United States, the Alzheimer’s Association, the University at Albany, the University of Illinois at Chicago, and the International Association for the Scientific Study of Intellectual Disabilities.
  • The Edinburgh Principles for community care of adults with intellectual disabilities affected by dementia.
  • A 20-item quiz on Intellectual Disabilities and Dementia.
  • Web-based bibliography on Alzheimer’s disease and intellectual disabilities and a hard-copy of a bibliography from the Greenfield Library at the Alzheimer’s Association.
  • Web-sites on Alzheimer’s disease and Intellectual Disabilities.
  • Protocol for recording baseline information on behaviors of adults with intellectual disabilities.
  • An evaluation form.

Copies may be obtained from: Center for Excellence in Aging Services, University at Albany, Richardson 207, Albany, NY 12222, USA.

Trainer’s Guide End of life Care: Supporting older people with intellectual disabilities and their families
Developed by L.T. Force, Ph.D. G. Abbatiello, Ph.D., K. Doka and L.R. Faulkner, Esq. for the NYS Developmental Disabilities Planning Council, copies are available from nysarc@nysarc.org

Videotapes and CD-Roms

When People with Developmental Disabilities Age
Aging . . . A Shared Experience
Dementia and People with Intellectual Disabilities – What Can We Do?
Intellectual Disabilities and Dementia – a two cd-rom training package
Copies may be obtained from: NYS Developmental Disabilities Planning Council, 155 Washington Avenue, Albany, NY 12210, USA. nrose@ddpc.state.ny.us

Face to Face:Respectful coping with dementia in older people with intellectual disability.
Copies may be obtained from: Centre for the Study of Developmental Disabilities, National University of Ireland, Dublin, Belfield, Dublin 4, Ireland.

Resource Websites

(these are portals that will lead to multiple related sites).

Intellectual Disabilities and Dementia
http://www.albany.edu/aging/IDD/index.html
www.uic.edu/orgs/rrtcamr/dementia

Dementia specific
http://www.alzheimers.org/
http://www.albany.edu/aging/links.htm
www.dementia.ie/index.html
http://www.dementia.stir.ac.uk/
http://www.dementiasolutions.com/EDGE.htm

Intellectual Disabilities and End of Life Issues
http://www.albany.edu/aging/lastpassages/index.html

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