News Release, 30 May 2001
It is estimated that 50% of people with Down's syndrome over the age of 50 develop dementia, with most cases occurring before the age of 60. This is a far younger age for the onset of dementia than in the general population, but many professionals and carers in specialist learning disability services are unaware of this and services are unable to respond to people's changing needs. The life expectancy of people with Down's syndrome has also improved greatly, which means dementia is a growing problem. The Foundation for People with Learning Disabilities, part of the Mental Health Foundation, has produced a briefing for commissioners, detailing its recommendations for future service provision in this area.
Dr David Thompson, project manager of the Foundation for People with Learning Disabilities' Growing Older with Learning Disabilities programme, said "We are concerned that services have not kept up with these developments; all too often, people with dementia are turned away from residential homes and day centres they are familiar with, because those services cannot cope with their changing and increasingly complex needs.
Often the only alternative is placement within generic older people's services, where staff may have no experience of caring for people with learning disabilities. At a time when they most need an established routine, people's lives are being destabilised."
A change of environment can lead to further problems, such as staff not recognising signs of further illness in a patient with whom they are unfamiliar. Sudden moves can also too easily mean that people's history is lost and, if not managed carefully, can be so traumatic that they can induce increased decline or even death.
The Foundation's briefing includes guidelines on residential provision, such as reviewing current registration procedures and ensuring that accommodation and staffing are suitable for this client group. Commissioners should think ahead when planning residential accommodation for people with Down's syndrome. In anticipation of future needs, for example, there should be ground floor bedroom and bathroom facilities and safe gardens for walking. Staffing levels may need to be adjusted to take account of support needed at night, when individuals are more likely to be confused, and it is important to maintain routines and social networks, such as placements in day centres.
The Foundation also recommends far greater awareness of the links between Down's syndrome and dementia among GPs, learning disability teams and care staff. With this in mind, the Foundation is producing an information pack, available later this year, covering Down's syndrome and dementia, aimed at nurses, care managers and family members, including a section written for people with a learning disability.
Further recommendations in the guide for commissioners include:
- Individual assessments of cognitive and adaptive functioning in early adulthood for all people with Down's syndrome, to enable faster diagnosis of dementia.
- Better co-ordination between and within agencies, so that people with Down's syndrome and dementia do not fall between generic dementia services and specialist learning disability services, neither of which are able to meet their combined needs.
- Planning for adequate transport services, aids and adaptations and routine medical investigations.
- Financial planning for the provision of adequate services.
- Consideration of the needs of family carers where the person they care for develops dementia.
Return to news releases 2001
Note to editors
For further information and interview requests contact please contact the press office on 020 7803 1105 / 1128 or email the press office
The Foundation promotes the rights, quality of life and opportunities of people with learning disabilities and their families. We do this by working with people with learning disabilities, their families and those who support them to:
- Do research and develop projects that promote social inclusion and citizenship
- Support local communities and services to include people with learning disabilities
- Make practical improvements in services for people with learning disabilities
- Spread knowledge and information.
|
|
|
|
|
|
|
|
|
|
|
|
|
|
