The Transitional Experiences of Co-Habiting Carers of People with Dementia when Homecare Begins

Abstract

The aim of this study was to explore the experiences of co-habiting carers of a person living with dementia, during the time that they were considering and beginning to receive paid homecare. I took a transitions approach to this research, using a longitudinal qualitative design.

All recruitment and data generation took place remotely due to the restrictions caused by the Covid-19 pandemic. A total of five carers completed the initial interview before beginning or increasing homecare to more than six hours per week. Two of those carers completed a further seven interviews each over a period of six months following the commencement of homecare services.

I used Multiple and Multidimensional Transitions (MMT) Theory and Reflexive Thematic Analysis (RTA) to guide my data analysis. I analysed the initial interview data and the longitudinal data separately, using MMT Theory to map the initial data, and RTA to generate themes for the longitudinal data.

The findings of the initial interviews were that the key areas of transition at the point of considering commencement or increasing homecare services were centred on the carer’s relationships, their identities and Covid-19.

The findings of the longitudinal part of the study consisted of four themes: Reaching Emotional Limits, Seeking Patterns: Seeking Connection, Private Spaces: Losing Agency and Continuous Change as a Disruptive Force. This led to the development of the Five Liminal Domains of MMT Theory: Agential, Identity, Social, Spatial and Temporal.

Recommendations are for continued research into the provision of social care services from a transitions perspective, to better understand the influence of perpetual liminality on informal carers. Implications for practice are the proposal to develop training that allows those who plan social care packages to understand the complexity and multifaceted nature of the experience of transitional periods.

Date of Award	2024
Original language	English
Sponsors	Economic and Social Research Council, UK
Supervisor	Trish McCulloch (Supervisor), Anna Gavine (Supervisor), Linda McSwiggan (Supervisor) & Tim Kelly (Supervisor)