Responding to stress and distress in young onset dementia: an interpretative phenomenological analysis of a biopsychosocial group intervention for carers

[摘要] Background: Family carers are fundamental to supporting people with dementia to remain at home; however psychological distress can occur as a result of their caring role. Research into the effectiveness of interventions for caregivers of people diagnosed with Young-Onset Dementia (YOD), the experience of those using such interventions, and the mediating processes, are limited. Methods: Five carers, providing support for a family member with YOD, were interviewed with the aim of exploring how they experienced the “Responding to Distress in Dementia” group being offered within NHS Lanarkshire. In addition, the study aimed to identify the influence that group participation had on caregiving. Interviews covered the whole ‘caregiving journey’ from first noticing symptoms, experiences in the group, and the time until interviews, and were analysed using Interpretative Phenomenological Analysis. Results: Within the group experience, four superordinate themes were identified: ‘connecting to other carers’, ‘learning about caregiving’, ‘group factors’ and ‘reduced carer distress’. During the post-group period, three superordinate themes were recognised: ‘maintaining support’, ‘applying learning’, and ‘normalising caregiving’. Conclusions: The study highlighted several interrelated themes involving creating connections to carers with similar experiences, social learning, and supportive learning through group structure and facilitation. Many of the processes are found within existing dementia caregiver intervention research. Implications for service provision and future research are outlined. Research examining the effectiveness of the intervention group used is currently underway.

[发布机构] University:University of Glasgow;Department:Institute of Health and Wellbeing

[关键词] Young-onset dementia, YOD, stress and distress, carer, IPA.