Understanding and Measuring the Wellbeing of Carers of People With Dementia

Abstract

Background and objectives: To determine how the wellbeing of carers of people with dementia is understood and measured in contemporary health research.

Research design and methods: A systematic review of reviews was designed, registered with PROSPERO, and then conducted. This focused on systematic reviews of research literature published from 2010 onwards; with the wellbeing of carers of people with dementia being a primary focus. N = 19 studies met the inclusion criteria. Quality appraisal was conducted using the AMSTAR tool (2015). A narrative synthesis was conducted to explore how wellbeing is currently being understood and measured.

Results: Contemporary health research most frequently conceptualizes wellbeing in the context of a loss-deficit model. Current healthcare research has not kept pace with wider discussions surrounding wellbeing which have become both more complex and more sophisticated. Relying on the loss-deficit model limits current research in understanding and measuring the lived experience of carers of people with dementia. There remains need for a clear and consistent measurement of wellbeing.

Discussion and implications: Without clear consensus, health professionals must be careful when using the term "wellbeing". To help inform healthcare policy and practice, we offer a starting point for a richer concept of wellbeing in the context of dementia that is multi-faceted to include positive dimensions of caregiving in addition to recognized aspects of burden. Standardized and robust measurements are needed to enhance research and there may be benefit from developing a more mixed, blended approach to measurement.

Keywords: Enriching caring; Social gerontology; Wellbeing.