Is living well with dementia a credible aspiration for spousal carers?

ABSTRACT

In England there has been substantial policy development and an academic drive to promote the goal of ‘living well’ for people with dementia and their family members. This article critically evaluates the feasibility of this intention, with reference to the experience of those caring for people with the condition. Qualitative data are utilised from a study which explored how couples negotiate relationships and care. The focus of this paper is the perspectives of spousal carers and the challenges they encounter within their caring role. Views were obtained via semi-structured joint interviews where the carer participated alongside the person with dementia. The extent to which living well with dementia is a credible aspiration for carers is examined via three themes: identity subsumed under care responsibilities; the couple as an isolated family unit; and barriers to professional support. The findings highlight that experience of caring is highly complex and fraught with multiple practical, emotional and moral pressures. It is asserted that research into dementia and care relationships must avoid a zero sum situation, prompted by living well discourses, where attempts to bolster the position of people with dementia compound the marginalisation and stigmatisation of informal carers.

KEYWORDS:

• Care
• couplehood
• dementia
• intergenerational relationships
• spousal relationships

Disclosure statement

No potential conflict of interest was reported by the authors.

ORCID

Edward Tolhurst http://orcid.org/0000-0002-4041-9768

Bernhard Weicht http://orcid.org/0000-0001-6886-5594

Notes

1 The perspectives of the men with dementia have been addressed elsewhere (Tolhurst & Weicht, 2017).

2 The interactional and sociocultural influences upon individual and shared perspectives within the joint interview setting have been addressed elsewhere (Tolhurst, Weicht, & Kingston, 2017).