Problems and shortcomings of advance directives for dementia research It would be possible for people in the early stages of dementia to consider the issue of research and record their wishes in an advance directive. The use of advance directives for research could serve three purposes: 1. to enable people with dementia to do something constructive which may eventually benefit others in a similar situation, 2. to protect vulnerable individuals from being exploited by scientists and researchers, and 3. to promote scientific progress by enabling scientists and researchers to conduct research involving people with dementia which may eventually entail preventative, diagnostic and therapeutic benefits. Of course, an advance directive could equally be used to record a person’s refusal to take part in research. However, few people actually write advance directives for future care (Xxxxxxx et al. 1991). Xxxxxx et al. (2000) found that many older people were interested in living xxxxx even though they had little previous knowledge of this concept. Nevertheless, as there is little public interest and awareness of advance directives for participation in research, it is likely that even fewer people make such advance directives and fewer again would make an advance directive for participation in non-therapeutic research (Berghmans, 1998). Consequently, in order to have a sufficient number of subjects for non-therapeutic research involving people with dementia, it is necessary to talk to the potential subjects about it whilst they are sufficiently capable of making a decision. Unfortunately, many people are only diagnosed with dementia at a later stage when they are not sufficiently able to understand what is involved and what the implications might be of making such an advance directive. Finding out that one has dementia is often a time a worry and stress, which for some people might not be the best time to start thinking about taking part in research projects. People with dementia would perhaps be more willing to take part in experimental treatment if treatments of proved efficacy have not had the desired effect. Unfortunately, by that time, they might not have sufficient capacity to consent or to write an advance directive (Lötjönen, 2003). Writing an advance directive for care/treatment is more straightforward than writing one for research. For the former, the person can refer to specific known interventions or use more general terms such as “all life-saving interventions” whereas for the latter, it is difficult to give cons...
