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Supporting people who have dementia

People with Learning Disabilities who have Dementia

Dementia is a global term describing a group of diseases that affect the brain. The damage caused by all types of dementia leads to progressive loss of brain tissue.  This means that symptoms become worse over time.

The life expectancy of people with learning disabilities has increased dramatically over the past 60 years primarily due to better health care.

For example, the life expectancy of someone with Down’s syndrome in 1936 was 9, compared to a current mean expectancy of 50 years.

People with Down’s syndrome are more vulnerable to dementia – research continues to understand why this is the case.

About 20 per cent of people with a learning disability have Down's syndrome.Figures from one study (Prasher 1995) suggest that the following percentages of people with Down's syndrome have dementia:

  • 30-39 years 2 per cent
  • 40-49 years 9.4 per cent
  • 50-59 years 36.1 per cent

The prevalence of dementia in people with other forms of learning disability is also higher than in the general population. Some studies (Cooper 1997, Lund 1985, Moss and Patel 1993) suggest that the following percentages of people with learning disabilities not due to Down's syndrome have dementia:

  • 50 years and over: 13 per cent
  • 65 years and over: 22 per cent.

This is about four times higher than in the general population.

How can the DCC Workforce Development Team help you to support people with learning disabilities who develop dementia?

Courses/Workshops

Awareness level course

Supporting People who have Dementia: Awareness level one–day courses aimed at front line staff.

Use the DCC online booking service and search for 'Dementia Awareness'

DCT Members: email DCTC@devon.gov.uk

E-Learning

E-learning: Dementia Awareness: Care Management Modules

Learning Gallery resources

The Learning Gallery is temporarily in storage. To access the resources:

DCC and DPT staff email:Mary Dart

DCT members email DCTC@devon.gov.uk

Learning Gallery resources specific to people with learning disabilities:

ResourceCode/No: LDGE /36
Title: Going with the Flow: Choice, dementia and people with learning difficulties
Author: Kirsten Stalker, Paul Duckett and Murna Downs

ResourceCode/No: MHGE /152
Title: About my friend, For friends of people with Down's syndrome and dementia
Author: Karen Dodd, Vicky Turk and Michelle Christmas

ResourceCode/No: MHGE /153
Title: About dementia, For people with learning disabilities
Author: Karen Dodd, Vicky Turk and Michelle Christmas

ResourceCode/No: LDGE /103
Title: In the Know Implementing good practice: Information and tools for anyone supporting people with a learning disability and dementia
Author: Diana Kerr & Heather Wilkinson

ResourceCode/No: LDGE /111
Title: Down's syndrome and dementia workbook for staff
Author: Karen Dodd,Diana Kerr,Scott Fern

ResourceCode/No: LDGE /158
Title: Caring for Kathleen: A sister's story about Down's Syndrome and Dementia
Author: Margaret T Fray

ResourceCode/No: LDGE /166
Title: Understanding learning disability and dementia: Developing effective interventions
Author: Diana Kerr

ResourceCode/No: LDGE /167
Title: In the know: implementing good practice: Information and tools for anyone supporting people with a learning disability and dementia
Author: Diana Kerr, Heather Wilkinson

Also available by emailing Mary Dart
Title: Down's Syndrome and dementia: Practitioners guide
Author: Diana Kerr

Resources on aspects of supporting all people who have dementia are also available – use the Learning Gallery Search  (with the key word dementia. Many of the resources will also be relevant to supporting people who have learning disabilities and dementia.)

Other useful websites

Alzheimers Society

Downs Syndrome Association

SCIE Dementia Gateway (for general information and e-learning on dementia)

SCIE: Dementia Links (scroll down to number 6)

University of Stirling

Department of Health (2009) Living Well with Dementia: A National Dementia Strategy

National Institute for Health & Clinical Excellence ( NICE) /Social Care Institute for Excellence(2006) Dementia: Clinical Guidelines

References:

Cooper S A (1997) 'High prevalence of dementia amongst people with learning disabilities not attributed to Down's syndrome'. Psychological medicine 27: 609-616

Kerr D ( 1997) Down’s Syndrome and Dementia: Practitioners Guide. Venture Press.

Lund J (1985) 'The prevalence of psychiatric morbidity in mentally retarded adults'. Acta psychiatrica Scandinavica 72: 563-570.

Moss S and Patel P (1993) 'The prevalence of mental illness in people with intellectual disability over 50 years of age, and the diagnostic importance of information from carers'. The Irish journal of psychology 14: 110-129

Prasher VP (1995) 'Age specific prevalence, thyroid dysfunction and depressive symptomatology in adults with Down's syndrome and dementia'. International journal of geriatric psychiatry 10: 25-31

Last updated September 2010