The experience of providing care in the early stages of dementia: An interpretative phenomenological analysis

Abstract

Objectives: Despite a wealth of research on factors affecting the well-being of caregivers for people with dementia, relatively little attention has been given to the issues facing caregivers in the early stages of dementia, and few attempts have been made to explore the subjective experience of caregivers using qualitative methods. This study explores the subjective, psychological experience of spouses or partners of people with early-stage dementia. Method: We conducted semi-structured interviews with 34 spouses or partners of people with a diagnosis of early-stage dementia, recruited through Memory Clinics, in order to elicit the participants’ understanding of, and perspective on, their situation and experience. Transcripts of the interviews were subjected to interpretative phenomenological analysis. Results: Four main themes were identified, relating to difficulties in understanding the nature and meaning of the diagnosis and condition, changes in the relationship, problems and challenges, and ways of coping. Limited understanding of dementia appeared to add considerably to the difficulties faced by caregivers at a time when they were having to respond to major changes in their relationship and interactions, make significant adjustments in their lives and consider the future. Conclusion: This study underlines the importance of helping family members to develop a working understanding of the condition in the early stages.