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.

The concept of personhood developed by Tom Kitwood highlights that the experience of dementia has relational dimensions that transcend the neurodegenerative impacts of the condition. This relational focus, however, has been narrowly conceptualised, with the impact of broader sociocultural factors on experience underplayed. The empirical exploration of interaction also requires reinforcement: a tendency for dyadic studies to portray findings in an individualised format hinders the interrogation of interpersonal negotiations. This article draws upon qualitative research that employed a joint interview approach, interviewing men with dementia and their spousal carers together. The focus on a dyadic case study from this research enables methodical exploration of the experience of living with dementia. This is realised by considering the socially-framed perspective of each person, and then how their perspectives are interwoven within interactional exchanges. This provides a platform for the evaluation of the current decontextualised notion of personhood and its implications. It is concluded that a sociologically-informed perspective can help to reinforce the academic understanding of personhood.

This paper evaluates how emergent age-based factors may impact upon the experience of dementia. A review of selected literature is undertaken to explore how personhood has been conceptualised in relation to dementia. It is then highlighted that very little literature explicitly addresses personhood with reference to young onset dementia. Young onset dementia is defined, and evaluation is then undertaken of the distinctive age-based factors that might shape the experience of the condition. It is noted that whilst there are separate literatures on both personhood and young onset dementia, there appears to be little endeavour to draw these two strands of thought together. The distinctive factors that shape young onset dementia suggest that a more heterogeneous perspective should be developed that accounts more appropriately for how personal characteristics shape the lived experience of dementia. The paper concludes that further research should be undertaken that has an explicit focus on personhood and young onset dementia.

This article investigates the experience of male spousal carers for women living with dementia. While cultural discourses on care are highly gendered, social scientific research often addresses care relationships in gender-neutral terms. Setting out to address this matter, this qualitative research study incorporated semi-structured joint interviews with 10 couples in which a male spouse cared for a woman with dementia. The aim was to explore how couples negotiate relationships and care following a diagnosis of dementia. The focus of this paper is on the perspectives expressed in these joint interviews by the male carers. A thematic analysis was undertaken to establish the key content of the men’s accounts. Three principal themes were identified: making sense of the condition; treating dementia as a problem to be solved; and engaging with professionals and support. The gendered basis of experience for male carers is explored within these themes, demonstrating how societal norms of masculinity intersect with caring roles. The paper concludes that a nuanced research approach to dementia care must continue to be developed, accounting for how gender shapes personal responses to the navigation of care relationships. Practitioners and policymakers must also consider how gendered experience shapes the identities and strategies of male carers.

The experience of dementia can only be understood adequately if the influence of gender is fully recognised. Research accounts have, however, tended to portray dementia in gender‐neutral terms. This qualitative research study aims to redress this imbalance by investigating the gendered experience of women with dementia. The research addressed women’s negotiation of relationships with spousal partners, other family members, professionals, support groups and services. The study included 10 mixed‐sex spousal couples in which the woman had been diagnosed with dementia. Women took part in semi‐structured joint interviews alongside their partners. This research focuses on the responses provided by the women with dementia within these interviews. Four principal themes were identified within the data: upholding gendered subjectivities; the broader relational context; closer networks; and gendered care relationships. These themes elucidate the challenges women face in sustaining relational subjectivity via the spousal relationship and wider social associations while also dealing with the cognitive impacts of dementia. The article concludes by highlighting that a more nuanced social scientific perspective on dementia is required that acknowledges the complexity of gendered experience. This can assist policymakers and practitioners to tailor support to meet the requirements of women with dementia.