Abstract

Family caregivers are fundamental in supporting people living with dementia to remain at home, however, psychological distress can occur as a result of their caring role. Research into interventions for caregivers of people living with young-onset dementia, including their experience of and the mediating processes of such interventions, remains limited. An Interpretative Phenomenological Analysis explored caregiver experiences and influence on caregiving of participating in a "Responding to Distress in Dementia" group. Five family caregivers were interviewed with discussions covering the period from first noticing symptoms to the interview session. Within the group experience, four superordinate themes were identified: 'connecting to other caregivers', 'learning about caregiving', 'group factors' and 'reduced caregiver distress'. During the post-group period, three superordinate themes were recognised: 'maintaining support', 'applying learning', and 'normalising caregiving'. The study highlighted several interrelated themes involving creating connections amongst caregivers with similar experiences, social learning, and supportive learning through group structure and facilitation. Many of the processes reflected those found in existing dementia caregiver intervention research. Recommendations included facilitating peer support groups and exploring whole-family approaches.

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