Understanding and Measuring the Wellbeing of Carers of People With Dementia

TY - JOUR

T1 - Understanding and Measuring the Wellbeing of Carers of People With Dementia

AU - Cunningham, Nicola A.

AU - Cunningham, Tom R.

AU - Roberston, Jane M.

N1 - No funding

PY - 2019/10

Y1 - 2019/10

N2 - 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.

AB - 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.

KW - Enriching caring

KW - Social gerontology

KW - Wellbeing

UR - https://www.scopus.com/pages/publications/85074786048

U2 - 10.1093/geront/gny018

DO - 10.1093/geront/gny018

M3 - Review article

C2 - 29566167

SN - 0016-9013

VL - 59

SP - e552-e564

JO - Gerontologist

JF - Gerontologist

IS - 5

ER -