Ethical issues in social research involving people with dementia

Abstract

Involving people with dementia in research raises many ethical and practical issues for people with dementia, carers and family members, researchers and care professionals. Internationally, the legal, governance and ethical framework for such research is rapidly changing, and there is considerable debate about how these changes will affect social research that needs to involve people with advancing dementia. This article is based on challenges that the authors faced when trying to develop a follow-up research proposal that would have involved people with advancing dementia, and consequential loss of capacity, in social research. It explores a range of issues and concerns, including accessing data to identify potential participants, assessing mental capacity, obtaining consent and the role of gatekeepers. These issues are discussed in the context of emerging governance in social care research and current and new legislation in the UK, the rest of Europe and beyond. The existing processes of ethical review are outlined and the implications for research of the new Mental Capacity Act, recently implemented in England and Wales, are considered. The difficult balance between protecting vulnerable individuals, recognizing the importance and benefits to society of research and maintaining an individual's right to take part in research is discussed. The article concludes with recommendations for researchers planning to undertake projects that may include people with reduced capacity as participants.

Keywords

capacity consent

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