Risky and resilient life with dementia: review of and reflections on the literature

Abstract

In this article, we report on our interpretation of past and current literature on negotiating risk and resilience in the everyday lives of people living with dementia. We undertook the literature review on which this article is based as part of an ongoing qualitative study designed to explore issues of risk and resilience from the point of view of people living with dementia in urban and rural communities. We carried out a search of international, peer-reviewed publications in 2012 with an emphasis on UK policy and practice. We also accessed UK Government documents and reports for background detail. We found that there is a personal, collective, practice and policy-based will to secure robust and positive responses to risk and to work with individual and collective notions of resilience. However, there is a competing practice narrative of vulnerability and protection, and a concern with litigation that undermines positive responses to risk. There is some recognition that for community dementia services to be responsive and proactive to the needs and wishes of their users, risk and resilience need to be considered from within complex and diverse, local perspectives and lifelong knowledge. We would add to this by emphasising that an understanding of local context is also needed to fully appreciate complex and nuanced positioning of the person living with dementia. Resources may or may not be in place, but how and why they are used (or not used), and how the person with dementia may be influenced (or not) by others and by localised contexts, may have far-reaching implications for policy and practice.

Keywords:

• risk
• resilience
• dementia
• sense of place
• citizenship
• literature review