Stress, coping and self-efficacy : designing an intervention to support informal caregivers of people with dementia

Informal caregivers of people with dementia are at an increased risk of negative outcomes, including stress, depression and physical ill-health (Ory et al., 1999). Attention has therefore been focussed on designing interventions to help prevent or reduce negative caregiving outcomes. Reviews have recommended that future research should provide interventions that are effective and cost-effective, theoretically-grounded and responsive to assessed needs (Gallagher-Thompson et al., 2012). The current thesis includes the design and testing of an intervention written to reduce negative caregiving outcomes by focussing on self-efficacy in informal caregivers of people with dementia. The intervention, designed to be brief in comparison with existing interventions, comprises three sessions covering different types of caregiving challenge: coping with behavioural aspects of dementia, coping with difficult feelings, and taking breaks. The intervention was initially pilot tested before being delivered in a quasi-experimental controlled study with informal caregivers (n=56), with intervention participants being able to choose whether to take part individually or in small groups. Intervention participants experienced significantly decreased caregiver burden compared to control participants (U=93.50, p=.016). Additionally, intervention participants reported being significantly less distressed by the symptoms of the person with dementia, compared to control participants (U=86.00, p=.015). However, no significant difference between groups was found on self-efficacy or depression, and possible reasons for this are discussed. A three-month follow-up (n=14) did not show sustained benefits of the intervention. In addition to the intervention study, two qualitative studies were carried out. The first was based on semi-structured interviews with informal caregivers of people with dementia (n=12) and ran concurrently with the intervention study, exploring the range of stressors and coping resources used by caregivers. Interpretative Phenomenological Analysis (IPA) was used to analyse the transcripts, which generated four major recurrent themes: Dementia and Change, Caring and the Self, Caring and Others, and The Care System. This study provided insights into the context in which interventions may be received by caregivers; in particular, it highlighted the complexity of caregiving experiences and the centrality of relationships. For example, accounts were given of families, friends and service providers either being a positive source of support or a contributor to stress, depending on the nature of the relationships. The second qualitative study followed the intervention study, and used IPA to analyse interviews with participants from both the group (n=4) and individual (n=2) intervention conditions. This study explored caregivers’ experiences of taking part in the intervention, and generated two recurrent themes: Sharing Experiences with Other Caregivers, and Meeting Needs. The analysis provided further insights into perceived benefits of the intervention for participants, and highlighted differing needs between group and individual participants. The results of these three studies are discussed in relation to current challenges and priorities for caregiver intervention research, and recommendations for practice are made. Further research is suggested to follow the outcomes of these studies, including development of a measure to gauge service-related sources of caregiving stress