Preserving personhood in dementia research: a literature review

The aim of this literature review was to investigate studies that actively engage older people with dementia in research 'with' rather than 'on' them. The focus of the paper is the methods that researchers have used to ensure that studies are ethical, meaningful and preserve the personhood of individuals. The intention is to present a selection of papers rather than undertake an exhaustive review. It is well recognized that the prevalence of dementia in older adults is increasing, this increase is reflected by a huge rise in the amount of research into this area. The biomedical model continues to dominate dementia research however there is a small, but growing, body of research that actively seeks to engage people with dementia. This increase in research that actively engages people with dementia has developed in parallel with the 'new culture' of dementia care in which Kitwood (Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham, 1997) exhorts us to respect the personhood of people with dementia. This review identifies 22 studies that sought the views and experiences of older people with dementia. There is evidence in each paper that the researchers had given thought to ensuring that their work was ethical, meaningful and preserved the personhood of individuals. The skill with which this aim was achieved varied considerably from formulaic approaches to those that clearly demonstrate that the researchers have a mindset that is grounded in a powerful belief in, and application of, the concepts of genuine respect for older people with dementia. The examples of good practice that have been drawn from these papers have direct application to both future research and to the provision of clinical care.