A narrative analysis of dementia caregivers' experiences, before and after the decision to transition the care recipient into residential aged care : a thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Psychology at Massey University, Manawatu, New Zealand

Abstract

For dementia caregivers, making the decision to transition the care recipient into residential aged care (RAC) is a significant decision. Dementia activates progressive changes in both physical and cognitive functioning, which affects behaviour, personality, and mood for the person living with dementia. Because of these physcial and mental changes, a majority of caregivers will experience many challenges and situations that will influence their decision for RAC for the care recipient. Using interviews on sleep and wellbeing across the trajectory of dementia care, this study specifically examined caregivers’ experiences before and after transitioning the care recipient to RAC. Interviews with eighteen caregivers of people with dementia who had since moved into RAC were analysed. Eight of the care recipients died after admission to RAC and before the interview was conducted. Narrative analysis was used to explore caregivers’ accounts. Key narratives identified were: ‘This is why I had to’ and ‘They said I need to’. These narratives demonstrate that the decision-making process commonly begins with an accumulation of factors, but the decision is only made when the factors become unmanageable for the caregivers. The entire process is underpinned by the negative shared social understandings of RAC, which underlies the reluctance from caregivers to make this transition. The narrative ‘It was a last resort’, therefore, highlights resistance to the transition even when the caregivers’ own wellbeing is affected. After the decision, however, caregivers describe relief regarding the decision, which was captured in the narrative ‘I made the right decision’. After the care recipient passes away, caregivers used the narrative ‘This is how I am adjusting’ to encapsulate the re-structuring processes caregivers experience. Through this re structuring process caregivers narrate establishing new identities, finding purpose, and experiencing agency.