Exploration of caregiver burden and positive gain in dementia, and development of an Acceptance and Commitment Therapy group intervention
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Background Dementia has been a global priority for over a decade, with a recognition that it presents a growing challenge for all those directly affected, as well as for health and social care services. For those who are caring for a relative at home, carer burden has been found to be predictive of physical and mental health problems, and can impact on the decision to place a relative in fulltime residential care. Gaining a fuller understanding of factors that impact on caregiver burden may help inform the development of effective interventions for this population. This thesis comprises a systematic review of the literature on individual behavioural and psychological symptoms of dementia (BPSD) and their impact on carer burden, a cross-sectional study of one hundred and ten dementia caregivers, exploring the impact of executive functioning deficits, and potential mediating mechanisms, on carer burden and positive gain, and a development and feasibility study of an Acceptance and Commitment Therapy (ACT) group intervention for dementia caregivers. Systematic Review Twenty-one studies measured the association between at least one individual symptom, or symptom cluster, and carer burden, and are included in the review. All studies found at least one symptom to be significantly associated with burden. However, due to the heterogeneity of studies in this field, there was insufficient evidence to establish whether any symptoms are more closely associated than others. Issues regarding the conceptualisation of burden and measurement of BPSD are highlighted and suggestions for addressing this in future studies proposed. Method One hundred and ten dementia caregivers completed five self-report questionnaires as part of a cross-sectional design, aiming to explore the role of executive functioning deficits, dementia management strategies and experiential avoidance in 2 the development of carer burden and positive gain. Drawing on these findings, a group intervention, based on ACT, was developed and delivered to twenty-three dementia caregivers. Data on attendance, attrition and qualitative feedback was collected as an indication of acceptability, and a quasi-experimental design, involving four pre, post and follow-up measures was employed to provide preliminary data on effectiveness. The measures used in both studies were the Dysexecutive Questionnaire (DEX) (study 1 only), Zarit Burden Interview (ZBI), Positive Aspects of Caregiving Questionnaire (PAC), Dementia Management Strategies Scale (DMSS) and Experiential Avoidance in Caregiving Questionnaire (EACQ). Results & Conclusions In study one, executive functioning deficits were found to account for most variance in burden. The use of negative management strategies and Active Avoidant Behaviour (a subscale of the EACQ), were also associated with higher levels of burden, while positive management strategies were associated with positive gain. The results suggest that management strategies and experiential avoidance could be potential mediating mechanisms in the development of carer burden, and so were targeted in the ACT group intervention in study two. Findings from study two indicate that the group intervention was feasible and acceptable to caregivers, with subjective change reported in understanding of behavioural changes in the care-recipient, ability to handle negative emotions and valued living. Suggestions are made regarding alternative outcome measures for future studies in order to capture participants’ experience more fully, as there was little statistically significant change in this study. Suggestions are also made regarding future directions for the intervention.