Overcoming ethical challenges affecting the involvement of people with dementia in research: recognising diversity and promoting inclusive research

Multiple characteristics and factors need to be considered when trying to attract a diverse set of people to research. However, it is important to avoid locating the problem in the individual, as this detracts attention from the way that structures, organisations, procedures and systems create problems and lead to discrimination and marginalisation. The tendency for researchers to consider some people with dementia as hard to reach may result in them overlooking their own responsibilities with regard to the promotion of diversity and inclusive research. At the same time, the requirements and methods needed for inclusive research must correspond to those required for good quality and hence ethical research. Failure to find the right balance would result in unsound research which needlessly exposes people to risk, inconvenience and burden. It is hoped that this discussion paper will promote useful and constructive debate and encourage the ethically sound involvement of a more diverse set of people with dementia in all aspects of research.