Frontotemporal dementia and primary progressive aphasia caregivers: coping, caregiving appraisals and wellbeing

Abstract

Frontotemporal Lobar Degeneration (FTLD) is a neurodegenerative disease with younger-onset, characterised by behavioural and/or language decline known as frontotemporal dementia (FTD) and primary progressive aphasia (PPA) respectively. Those caregiving for persons with FTD and PPA arguably appraise their caregiving role and adopt coping strategies unique to the syndrome. The aim of this thesis was to investigate the appraisals, coping strategies and psychological wellbeing of FTD/PPA caregivers. A systematic review (Study 1) found no caregiver or care-recipient characteristics were reliably predictive of dementia caregivers’ adoption of solution-focused, emotional support/acceptance-based or dysfunctional coping strategies. Study 2 found the effect of care-recipients’ care needs on FTD caregivers’ wellbeing depended on caregiver appraisals of strain. Use of dysfunctional coping strategies and fewer financial resources contributed to high levels of caregiver strain, which in turn predicted reduced QoL. Caregivers’ use of dysfunctional coping as a response to their strain increased levels of depression, while problem-focused coping strategies increased their QoL. Study 3 found PPA severity was not predictive of caregiver satisfaction or psychological wellbeing. Caregivers’ appraisal of satisfaction was not related to coping strategies, caregiver depression and positive affect, nor did satisfaction act as a mediator of PPA severity and psychological wellbeing. Rather, problem-focused coping uniquely predicted reduced caregiver depression. Younger PPA caregivers were at risk of adopting more dysfunctional coping strategies. This thesis highlights that the coping strategies adopted by FTD and PPA caregivers influence their caregiving appraisals and psychological wellbeing. As coping strategies are amenable to change and were central to the psychological wellbeing of both FTD and PPA caregivers, coping strategies ought to be a focus of intervention in this population.