Content area
Full Text
ABSTRACT
Given the now well-recognised risk of Alzheimer's Disease (AD) for adults with Down's Syndrome (DS) as they reach middle age, services for people with learning disability (LD) need to meet this new challenge. Good practice guidance from the Foundation for People with Learning Disabilities (Turk et al, 2001) recommended that every service for people with learning disability should set up a register of adults with DS, conduct a baseline assessment of cognitive and adaptive functioning before the age of 30 years, develop specialist skills in this area, offer training to other professionals, front-line staff and carers, and seek high-quality co-ordination between agencies. This article reports the progress of one LD service in meeting these challenges, highlighting the successes and difficulties that may guide other teams considering such a development.
BACKGROUND
Known risks
The increased risk of Alzheimer's Disease (AD) among people with Down's Syndrome (DS) is generally known to professionals in learning disability (LD) services. However, the original training of many clinicians did not include this knowledge (or what to do about it) because the life expectancy of people with DS was too short to reveal the extent of the risk. Nowadays life expectancy for people with DS is well into the 50s. The prevalence rates for AD rise from about three per cent among those in their 30s to about forty per cent of those in their 50s (Holland et al, 1998). DS is the commonest known cause of mild and severe learning disability (Minns, 1997). To date, few services in the UK have adjusted their practice to meet this new challenge.
Diagnosis
There is as yet no test for AD, so diagnosis relies on excluding other disorders and demonstrating deterioration from a previous level of functioning. It is more complex in people with DS, for several reasons. There is limited ability to self-report and often sparse information available on prior functioning. The differential diagnosis of AD in people with DS is made harder by susceptibility to thyroid disease, a variety of sensory deficits and deterioration, and the difficulties of diagnosing depression (which is a common problem in adults with DS). These disorders can present symptoms similar to those of dementia, may occur independently of or concurrently with it, and can often...