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

Abstract

First paragraph: Research consists of a systematic, organised inquiry to find answers to worthwhile questions, using predefined methods or procedures which are clearly documented. The answers to such questions should contribute towards a body of knowledge or theory and it should be possible for other people to understand exactly what researchers did to arrive at their conclusions and any limitations there may have been to the study. Research into the care, treatment and support of people with dementia is essential for the lives and wellbeing of millions of people who have or at some point will develop dementia. Such research often provides a means to develop new drugs and treatments, promote good health, find out what kinds of services and care people want, explore the needs and experience of professional and informal carers, and better understand what it means to live with dementia. Very often, research provides a basis for government policies, the development of guidelines and the creation or improvement of products, services, support, medication and procedures. This discussion paper is about all kinds of research involving people with dementia. Involvement in research should be understood as including ‘Public Involvement’ and involvement as a research participant (formerly known as a research subject). Both forms of involvement are equally important and raise ethical issues, which are the focus of this discussion paper.