It’s your move - the development of a guide for GP’s in the diagnosis of dementia in people with Down’s syndrome


Watchman K (2003) It’s your move - the development of a guide for GP’s in the diagnosis of dementia in people with Down’s syndrome. Learning Disability Practice, 6 (8), pp. 14-17.

The link between Down syndrome and dementia has been widely researched in recent years (for example, Selikovitz 1997, Janicki and Ansello 2000). In the general population of older people minor cognitive difficulties are relatively easy to detect, although they undoubtedly increase with age. Ageing is associated with the development of dementia, most commonly Alzheimer's disease. [ILLUSTRATION OMITTED] In people with Down syndrome the situation is rather different. It has been recognised that changes in the brain of a person with Down syndrome are observed much earlier in life, so that by middle age the formation of plaques and tangles associated with Alzheimer's disease is evident. Down's Syndrome Scotland recognises the value and benefit of knowing about potential health risks in later life and understands that this is crucial to ensure that they are diagnosed and treated. This is especially applicable to adults with Down syndrome and dementia. As Kerr (1997) notes, the period between diagnosis of dementia and death in a person with Down syndrome can be as limited as three to five years--again contrasting sharply with the general population. An early diagnosis is essential to ensure that services and appropriate support systems are put in place. Vassilas and Donaldson (1998) note that there is an implication for the role of the GP in dementia care, particularly in prescribing medication. This cannot happen if an accurate diagnosis is not made early enough. [ILLUSTRATION OMITTED] Down's Syndrome Scotland has produced a quick reference guide, called It's Your Move, that will be helpful when considering the possibility of dementia among people with Down syndrome (Watchman 2002). This dual purpose resource also offers advice on other health conditions that often affect adults with Down syndrome. Many of these conditions have symptoms that may be confused with dementia, yet, if detected, can be treated relatively easily. Baseline assessments The decision to produce It's Your Move arose from an awareness that baseline assessments are rarely carried out among people with Down syndrome. Without a record of abilities in key areas it is very hard to measure deterioration and to achieve an accurate diagnosis. Staff and carers, who might see a person nearly every day, nevertheless can fail to notice subtle changes in his or her condition, and GPs and health professionals who rarely see the person might also miss symptoms. Studies suggest that in certain circumstances carers should contact the GP of the person with Down syndrome (Donnelly and Earnshaw 2001, Janicki and Ansello 2000). Other research criticises GPs for their lack of awareness of dementia or for making inappropriate referrals when the patient does not actually have dementia. It appears that many GPs lack experience in working with people with Down syndrome and so cannot...

Learning Disability Practice: Volume 6, Issue 8

Publication date31/10/2003
Date accepted by journal28/11/2003