Who can take part in research?
Participating in research
All kinds of people are needed to take part in dementia research including, for example, people with dementia, carers, members of the general public, providers of social support and health care professionals.
There may be conditions for taking part in a particular study (e.g. based on age, state of health or living arrangements) which are determined by the objectives of the research. However, if someone would like to take part in research, it is just a question of finding the right study.
The involvement of people with dementia in research should not be limited to their participation in clinical trials nor to the involvement of people who only have mild cognitive impairment. Whilst there are ethical and legal issues to consider (please see section on consent) and researchers will need to pay particular attention to the possible communication and memory difficulties of the participants, these are not valid reasons to exclude people with dementia from other forms of research. In addition to sharing their personal experience of what it is like to have dementia, people with dementia can be involved in all kinds of research such as studies which evaluate service provision, the development of guidelines, consultations regarding state policies and working groups on a wide range of issues such as legislation, ethics, care, stigma and diagnostic procedures, to name but a few. They can also be involved in the planning and organisation of studies, as well as in the analysis and interpretation of the findings of some studies. It is up to researchers to find innovative and creative ways in which people with dementia can express their views.
An interesting publication which discusses the involvement of people with dementia in research (and which contains several chapters by people with dementia) is:
Wilkinson, H. (Ed.) (2002), The perspectives of people with dementia: research methods and motivations, Jessica Kingsley Publications
Last Updated: Friday 21 August 2009