Understanding Positive Aspects of the Caregiver Experience in Dementia: A Meta-Integration and Qualitative Investigation

Abstract

This dissertation includes two studies designed to explore the positive aspects of providing care to someone living with dementia. The work reported here provides a knowledge base that benefits future research by allowing for a greater degree of consistency in labels, measures, and definitions of positive aspects, as well as by informing theoretical models of caregiving. The label ‘positive aspects’ is used in this work to refer to experiences or outcomes that are perceived by a caregiver to be positive in nature, and related to fulfilling the caregiver role. Study one is a meta-integration of the quantitative and qualitative research on the positive aspects of caregiving for someone living with dementia. Eight databases were systematically searched, and 80 studies were included in the study. Quantitative dataset synthesis revealed common relationships between measures of positive aspects and other caregiving factors. Qualitative dataset synthesis revealed factors that underlie, facilitate, and hinder positive aspects. Synthesizing the qualitative and quantitative datasets I elaborated on relationships between caregiving factors and provided a holistic account of the phenomenon, including conditions for the experience of positive aspects of caregiving. Study two is a qualitative investigation into caregivers’ perceptions and experiences of positive aspects of caring for someone living with dementia. The findings from study two lend support to study one findings of the factors that underlie, facilitate, and hinder the experience of positive aspects of caregiving. Study two findings provide insight into the relationship between positive aspects of caregiving and caregiver age, caregiver/care recipient relationship, and years spent caregiving. The findings of this dissertation may be used to inform models of caregiving, future research, and caregiver intervention programs. Through this work I elaborate on how caregiver factors, caregiving environment factors, and the complex interplay between the two impact caregivers’ experience of caregiving. I suggest the use of neutral models of caregiving that emphasize caregiver appraisal of the caregiving experience, as opposed to models of negative or models of positive caregiving outcomes. These findings highlight facilitating positive appraisal of the caregiving role and caregiving demands as a point of intervention for caregivers.