The Alzheimer’s Society has expressed serious concern at the interpretation of a new study into the effectiveness of drugs for dementia, published in The Lancet.
In November 2003 the Alzheimer’s Society distributed a survey to its membership and to memory clinics. The survey sought the views and experiences of people with dementia and their carers on anti-dementia drugs, and invited comments on the Nice review of these treatments.
Over 4,000 questionnaires were returned by the closing date, January 2004. There were 2,889 responses from people who had experience of drug treatment for dementia. This includes people diagnosed with forms of dementia other than Alzheimer's disease. Of these, 2,672 (66 per cent of total respondents) had experience of Aricept, Exelon, Reminyl or Ebixa, with 1,761 people currently receiving one of the four drugs.
This is a significant body of consumer expertise. The sample is far larger than that used in any individual clinical trial and approaches the total meta-analysis sample size for some of the drugs.
The Alzheimer’s Society survey intentionally sought people’s spontaneous views of the benefits and drawbacks of the drug treatments. While the data from randomised, placebo-controlled clinical trials provide objective evidence of the effectiveness of drugs on psychometric scales, results from these studies give little insight into what these drug treatments mean for ‘real’ people. Alzheimer’s disease is a naturally heterogeneous disorder that affects each individual in a different way.
What was their experience of drug treatments?
- 2,672 people (66 per cent) had experience of Aricept, Exelon, Reminyl or Ebixa.
- 77 per cent of this group had been prescribed Aricept.
- Despite lack of NHS approval, 14 per cent of people had tried Ebixa.
Did they say the drugs worked?
- 73 per cent of people with a diagnosis of Alzheimer’s disease thought that the treatment worked.
- 22 per cent of people reported nausea as an adverse effect.
Download PDF file: Results of questionnaire survey