Examination of dementia caregivers' experiences: the role of suffering and empathy in the caregiving relationship and a review of the evidence base for interventions targeting caregiver anxiety

Abstract

Background Dementia, which affects an estimated 35 million individuals worldwide, is now recognised as a growing health and economic problem. With insufficient levels of health and welfare services in many nations, there exists a reliance on family caregivers to provide care for individuals with dementia (IWDs). However, the potential negative psychological and physical consequences of the caregiving role cannot be ignored. A growing literature base has improved the theoretical understanding of mental health difficulties (e.g. depression, burden) in caregivers. However, significant gaps in the research remain. These include understanding outcomes such as caregiver anxiety and examining the role of potentially crucial variables, such as levels of suffering and empathy. Objectives An empirical study was conducted in order to add to the literature regarding depression and anxiety in spousal caregivers of IWDs. This research conducted exploratory analyses of the relationships between the suffering of IWDs, IWDs’ depression and anxiety, caregivers’ levels of empathy, caregiver satisfaction and caregiver anxiety and depression. Caregivers’ anxiety and depression is considered in the context of research on co-morbidity. In addition, the levels of discrepancy between ratings of suffering, whereby caregivers frequently report IWDs to be suffering more than IWDs self-report, were also examined. A systematic review was conducted in order to evaluate the effectiveness of psychosocial interventions for anxiety in informal caregivers of IWDs. Method For the empirical study, a cross-sectional survey methodology was employed where dyads of caregivers and IWDs completed questionnaires during face-to-face interviews. Primary variables examined were the suffering of IWDs, IWDs’ levels of depression and anxiety, and caregivers’ levels of empathy, satisfaction, depression and anxiety. The suffering of IWDs was rated both by the IWDs (self-reported suffering) and the caregivers (perceived suffering). Descriptive statistics and exploratory correlational analyses were used to address a number of exploratory research questions regarding the relationships between the investigated variables. For the systematic review, five scientific databases were searched for relevant randomised controlled trials (RCT). Study quality was assessed according to standardised, recommended criteria and a qualitative synthesis of the evidence, including effect sizes, is described. Results Results from the empirical study suggest high levels of clinical anxiety in the caregiver population. In the current sample, there was a high prevalence rate of anxiety (52.5%) and a lower rate of depression (15.0%). However, there were no statistically significant correlates for caregiver anxiety and depression found. Findings are discussed in the context of previous research, the demographics of the current sample and difficulties with recruitment. For the systematic review, twenty studies with substantially different methodological quality were included. Anxiety was rarely identified as the primary outcome measure. However, the evidence suggests that Cognitive Behavioural skills training and psycho-educational interventions can be effective in treating caregiver anxiety. Some preliminary evidence for interventions underpinned by Mindfulness-based strategies was also found. Conclusions The empirical study found that a large proportion of Scottish spousal caregivers experience clinical levels of anxiety. This suggests that caregiver anxiety must be a key priority for both clinicians and researchers alike. In addition, further research examining these understudied variables and using dyadic methods remains crucial to increasing understanding into caregivers’ outcomes. The systematic review demonstrated that research regarding interventions for anxiety in caregivers is growing and there is now a greater emphasis on the underlying theoretical models of delivered interventions. There is also growing evidence that interventions with clear theoretical basis may be more likely to be effective. However, both the empirical study and the systematic review highlight further questions that remain to be addressed in the literature. Further research continues to be necessary in this area to ensure that services are appropriately meeting the needs of both caregivers and IWDs.