CLIP 15 Minute Online Tutorial

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CURRENT LEARNING IN PALLIATIVE CARE

15 Minute Online Tutorials

Helping people with communication difficulties

3: Down syndrome

Intermediate Level

CLIP Index

How to use this tutorial

Case study

Activities

Further activity

FURTHER READING

Journal articles

Alderson P. Down's syndrome: cost, quality and value of life. Social Science & Medicine, 2001; 53(5): 627-38.

Barr O, Gilgunn J, Kane T, Moore G. Health screening for people with Learning Disabilities by a community Learning Disability nursing in Northern Ireland. Journal of Advanced Nursing, 1999; 29(6):1482-1491

Cosgrave MP. McCarron M. Anderson M. Tyrrell J. Gill M. Lawlor BA. Cognitive decline in Down syndrome: a validity/reliability study of the test for severe impairment. American Journal of Mental Retardation, 1998; 103(2):193-7.

Cosgrave MP. Tyrrell J. McCarron M. Gill M. Lawlor BA. Age at onset of dementia and age of menopause in women with Down's syndrome. Journal of Intellectual Disability Research, 1999;43:461-5.

McCarron M. Some issues in caring for people with dual disability of Down’s Syndrome and Alzheimer dementia. Journal of Learning Disabilities for Nursing and Health Care, 1999; 3B: 123-129.

Miller B. Palliative care for people with non-malignant disease. Nursing Times, 1998; 94: 52 – 53

Prasher VP. End stage dementia in adults with Down syndrome. International Journal of Geriatric Psychiatry, 1995; 10: 1067 – 1069.

Prasher VP. Filer A. Behavioural disturbance in people with Down's syndrome and dementia. Journal of Intellectual Disability Research. 1995; 39(Pt 5): 432-6.

Tuffrey-Wynne, I. The palliative care needs of people with intellectual disabilities: a case study. International Journal of Palliative Nursing. 2002; 8(5): 222-32.

Resource books and websites

M.T Fray.Caring for Kathleen: A Sisters Story About Down’s Syndrome and Dementia. 2000 B.I.L.D. Publications, 2000. www.bild.org.uk

Kerr D. Down’s Syndrome and Dementia. Birmingham: The Venture Press, 1997.

Marler R, Cunningham C. Down’s Syndrome and Alzheimer’s Disease: A Guide for carers. London: Down’s Syndrome Association (155, Mitcham Road, London, SW17 9PG. Tel; 0181 6824001)

Down Syndrome Information Network: www.www.down-syndrome.info

Down's Syndrome Association: www.downs-syndrome.org.uk

Down Syndrome Educational Trust: www.downesed.org