Urban Share of the “Burden”: Impact of a Support Organisation on Caregiver Burden of People Affected by Dementia

Abstract

Purpose. This study investigated the experiences and expectations of unpaid caregivers who were members of a nonprofit social support organisation. Design and Methods. Colaizzi’s phenomenological exploration was followed. Data were saturated after 15 in-depth individual interviews at a centre for people affected with dementia. Findings. The themes reported with the COREQ checklist were contributory to caregiver burden, the escalation of dementia symptoms, changes in family roles, psychological distress, social challenges, membership in a social network, and developing effective coping skills. Practice Implications. Access, availability, and continuity of psychosocial support programs are vital for the wellbeing of people affected with dementia.