Exploring the Lived Experience of People with Dementia Through Interpretative Phenomenological Analysis

Dementia is arguably one of the biggest challenges facing society today, impacting millions of people worldwide. Nonetheless, there is only a relatively small body of research exploring what it is like to live with dementia from the perspectives of people who have this condition. This is partly because of the (implicit or explicit) belief that people with dementia lack insight into their condition and cannot talk about their experiences clearly. In this article, I argue that such beliefs are typically both erroneous and unhelpful, and that there is great value in seeking to illuminate the lived experiences of people with dementia. I present an interpretative phenomenological analysis of data from semi-structured interviews with six participants who had moderate dementia. I elicit five themes from this analytic process, and discuss the three most prominent here: awareness and understanding of dementia, clarity and confusion, and social support and relationships. I mobilise these themes to narrate the lived experiences of people with dementia, demonstrating their awareness both of the difficulties presented by dementia and of the negative perceptions of others.