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
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Slade2015.docx (9.564Mb)
Date
27/11/2015Author
Slade, Rebecca
Metadata
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.
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