Académique Documents
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providers have effective specialist Resources Janicki, M.P. & Dalton, A.J. (2000). Prevalence of
teams that set up individually tailored dementia and impact on intellectual disability
services. Mental Retardation, 38, 277-289.
care services. They also provide Booklets www.aamr.org
essential home care. Since people with
ID affected by dementia may not be Janicki, M.P. (1995). Developmental Disabilities and Janicki, M.P., Heller, T., Seltzer, G. & Hogg, J. (1996).
able to continue to live on their own, Alzheimer’s Disease: What You Should Know. The Arc Practice guidelines for the clinical assessment and
of the United States. 48pp care management of Alzheimer’s disease and other
‘dementia capable’ housing and
A booklet covering some of the fundamentals dementias among adults with intellectual disability.
support need to be provided. Use of
concerning adults with intellectual disabilities and Journal of Intellectual Disability Research 40, 374-
daycare (or day activity services) is 382. Also available from the American Association on
Alzheimer’s disease, including what is Alzheimer’s
recommended to maintain quality of life disease, its course and outcome, diagnostic Mental Retardation www.aamr.org/Reading_Room
and adequate supervision. Home suggestions, care considerations, and how to obtain
services can reduce the need for, and assistance. Contains resource list and glossary. Kerr, D. (1997). Down’s Syndrome and Dementia.
Available from: The Arc of the United States, 1010 Birmingham, UK: Venture Press
delay the time of, admission to
expensive nursing facilities or other Wayne Avenue, Suite 650, Silver Spring, MD 20910
USA. http://209.183.228.233 Internet
intensive care institutions.
Kerr, D. & Innes, M. (nd). What Is Dementia? - A Dementia and intellectual disabilities-related
booklet about dementia for adults who have a learning resources and technical information are available at
Principles that should guide disability. 16pp. the University of Illinois at Chicago’s website at
the care decisions of people www.uic.edu/orgs/rrtcamr/dementia
This booklet is designed to explain dementia and its
with ID and dementia nuances to people with intellectual disabilities (termed
“learning disabilities” in Scotland). Using drawings Dementia and intellectual disabilities-related
The main principle guiding decision- discussion group is available at
and easy language, this booklet covers many of the
making should be that services should http://groups.yahoo.com/group/Dementia-IDlistserv
symptoms and behaviours classically associated with
be aimed at meeting the individual Alzheimer’s disease.
needs of each person. This principle is Available from: Down’s Syndrome Scotland, 158/160 Videos/CD-ROMs
summarised in the concept of ‘person- Balgreen Road, Edinburgh, Scotland EH11 3AU
centered planning’ which has been www.dsscotland.org.uk. A downloadable version is Dementia and People with Intellectual Disabilities –
available at www.uic.edu/orgs/rrtcamr/dementia What Can We Do?
widely promoted as an effective
An instructional video which covers the basics of how
framework for service delivery. The
Journal articles and books dementia affects adults with intellectual disabilities,
focus is on making decisions based on and provides information on diagnostics and
the individual strengths, capabilities, Wilkinson, H.A. & Janicki, M.P. IASSID. (2002). The suggestions on providing supports and services in
skills, and wishes of each person. The Edinburgh Principles with accompanying guidelines community care settings. Available in VHS and CD-
individual’s family, relatives and closest and recommendations. Journal of Intellectual ROM formats.
Disability Research, 46, 279-284. www.blackwell- Available from: New York State Developmental
friends should be engaged with the
science.com/uk/journals.htm Disabilities Planning Council, 155 Washington Avenue,
person in all decisions with the aim of Albany, New York 12222 USA – www.ddpc.state.ny.us
helping the person remain in his or her Dalton, A.J. (1995). Alzheimer disease: A health risk
chosen home and community. The of growing older with Down syndrome. In L. Nadel
Edinburgh Principles were developed and D. Rosenthal (Eds.) Down Syndrome: Living and
Learning in the Community (pages 58-64). New York: Alzheimer’s Disease International would like to thank Dr
with these goals in mind. The
Wiley-Liss. Matthew Janicki, Dr Heather Wilkinson and Dr Arthur
principles, available at Dalton for their help in producing this factsheet.
www.alz.co.uk/edinburghprinciples, Janicki, M.P. & Dalton, A.J. (Eds.). (1999). Aging,
have been adopted by the IASSID Dementia and Intellectual Disabilities: A Handbook.
(www.iassid.org) and circulated by Philadelphia: Taylor & Francis.
Alzheimer’s Disease International. www.taylorandfrancis.com