Navigating the maze of dementia: a qualitative analysis of a peer-assisted help and support programme for informal caregiver

Abstract

PurposeFollowing several prior editions and the acquisition of quantitative data indicating a 18% reduction in perceived caregiver burden and a 27% improvement in their quality of life regarding pain/mild discomfort, this present study aims to compile and examine the shared experiences of caregivers participating in the peer-to-peer Expert Caregiver Programme. The aim is to gain a deeper understanding of the programme’s inherent value.Design/methodology/approachThis is a qualitative study of the Expert Caregiver Programme, a peer-to-peer support and learning initiative designed for informal caregivers of individuals with dementia. Over a span of two and a half months, this study observed a group of ten informal caregivers who were participants in the sixth edition of the Expert Caregiver Programme at a Sociosanitary Hospital in Catalonia.FindingsThe results have revealed the emergence of two distinct spirals. Firstly, the ongoing challenge of adapting to a degenerative process, coupled with the caregiver's sense of responsibility, leads to an overwhelming situation for the caregiver as far as caregiving and emotional management are concerned. This, in turn, exacerbates their feelings of isolation, fatigue and discouragement. On the other hand, the understanding of the disease and the sense of compassion towards the person with dementia have been identified as pivotal elements in the construction of an upward spiral, creating greater comfort for the caregiver. Consequently, these factors can be effectively addressed within the framework of a programme such as the Expert Caregiver.Originality/valueThe qualitative approach has allowed for a comprehensive and extensive exploration of the caregivers' experiences with individuals suffering from dementia. This has revealed the existence of a positive spiral that can be nurtured through peer support programmes.