Abstract

Background and objectives: The notion of well-being, initially derived from concepts of hedonic and eudaimonic well-being, plays an increasingly dominant role in the health policy discourse. While the growing recognition of well-being in the evaluation of interventions is to be welcomed it is also important to recognise that aspects associated with well-being may shift over the course of people’s lives and with the roles they take on. This study explored how unpaid family carers of people with dementia conceptualise well-being. The study was particularly interested in learning whether there were differences in what men and women understood well-being to be, while supporting a relative with dementia.

Methods: Semi-structured qualitative interviews with seven husbands, seven wives, six adult-daughters and five adult-sons of people with dementia in England were conducted to explore carer concepts of well-being. Thematic analysis was used to analyse the interview data.

Results: Six key themes were identified as influential to carer well-being. These were: the use of successful coping-mechanism, the relationship with the care recipient, support from family and friends, safety and security of the person with dementia, carer health and the support provided by members of the medical profession, social workers and third sector organisations. Each of the themes were presented by looking how men and women, spouses and filial carers constructed the different components of well-being. In addition, this study explored how the different components could act as both facilitators and barriers to well-being. Greater similarity in patterns was observed between husbands, wives and daughters, while sons provided more varying accounts and levels of involvement. Most carers in this study, for instance, reported living with health conditions. While physical ailments were mostly recognised as issues that could be controlled, carers experienced greater difficulties responding to emerging or existing mental health issues, particularly anxiety. All carers recognised the importance of their primary care physician in unlocking access to services, often simply through recognition of the illness. Particularly husbands seemed to be more successful at gaining provider support, while a number of daughters reported difficulties in being recognised as the carer. With respect to the component “safety and security”, spouses showed greater concern about what would happen if they were no longer able to provide support, while filial carers primary concern was the physical safety and security of their parent with dementia living in their own home or in institutional care settings.

Conclusion: A better understanding of how these four carer groups conceptualise well-being, and how they identify facilitators and barriers to their personal well-being brings important insight to the policy discourse, emphasising the need for a greater variety in responses to carers needs by recognising their diversity.