Navigating the Impacts of Dementia: The Experience of Male Spousal Carers.

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 Spousal Unit and Dementia: Investigating the Relational Basis of the Couplehood Concept.

A strong emphasis is consistently placed upon the relational basis of experience within social scientific dementia research. Within this research corpus, the concept of couplehood is increasingly employed, albeit in rather undefined and loosely theorised ways. Moreover, the evaluation highlights that couplehood is often defined by a normative position that seeks to convey an affirmative perspective on dementia and spousal relationships. The lack of theoretical foundation, however, weakens the explanatory potential of the concept, both for theorising dementia, as well as for empirical research. This article critically evaluates the utility of the couplehood concept by delineating three underlying theoretical conceptions: phenomenological, interactional and relational perspectives. It will be argued that those theoretical threads offer different analytical angles and research opportunities. More thorough ontological development, however, can guide understandings of the complexities that underpin the relational experience of dementia. This will promote a conceptual starting point that offers a more balanced and multifaceted accommodation of two persons and their relationship.

Sustaining relational subjectivity: The experience of women with dementia.

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.

Unyielding selflessness: Relational negotiations, dementia and care.

This article addresses how couples within care relationships engage in negotiations when mutual selflessness is the relational starting point. Evaluation of hypothetical dementia care scenarios offers insights into pressures upon joint decision-making. Strategic interaction models such as 'the prisoner's dilemma' focus on how a person's pursuit of self-interested preferences might be impeded by the self-interest of another person. Scrutiny of negotiations within care relationships demonstrates that selflessness can also present significant challenges, as combined strategies of altruistic intent mean that neither party is able to prioritise the other person successfully. Moreover, sociocultural pressures associated with illness and care mean that alternative strategic options are difficult to pursue. Care deliberations, predicated on mutual selflessness, can therefore present a static and unyielding interactional context for both parties to endure. The exploration of relational negotiations highlights the requirement to understand the complex breadth of factors that shape experience. This can accordingly enhance academic understandings of the relational basis of dementia and care, as well as informing the approaches of policymakers.

Preserving personhood: The strategies of men negotiating the experience of dementia.

An understanding of dementia requires sensitivity to the complex breadth of factors that comprise the person's experiential and social context. This is necessary to ensure that academic and public perspectives on dementia are not subsumed under homogenising discourses that prioritise the neurodegenerative basis of the condition. Gender is one such factor of this 'social location' that must be acknowledged. Cultural standards of masculinity have particular impacts upon men with the condition, thus generating distinctive challenges. This article draws upon qualitative research that included joint interviews with 14 men with dementia and their carers. The analytical focus is on the perspectives of the men with dementia and the strategies with which they respond to the condition. These perspectives are organised via four themes: remaining unmoved, fighting back, emphasising social contributions, and redefining services. This enables exploration of how men adopt particular strategies to preserve their own personhood, which include equable resilience, but also more agential measures to counter the influence of the condition. It is concluded that an approach to dementia research that is more sensitive to masculine-gendered experience is required so that the experience of men with the condition can be conveyed more cogently.

Narrative collisions, sociocultural pressures and dementia: the relational basis of personhood reconsidered.

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.

The making of 'the elderly': constructing the subject of care.

The provision and arrangement of care for elderly people is one of the main challenges for the future of European welfare states. In both political and public discourses elderly people feature as the subjects who are associated with particular needs, wishes and desires and for whom care needs to be guaranteed and organised. Underlying the cultural construction of the care regime and culture is an ideal type model of the elderly person. This paper analyses the discursive construction of elderly people in the discourses on care in Austria. An understanding of how elderly people as subjects, their wishes and needs and their position within society are constructed enables us to analyse, question and challenge the current dominant care arrangements and its cultural embeddings. The paper demonstrates the processes of silencing, categorisation and passivation of elderly people and it is argued that the socio-discursive processes lead to a particular image of the elderly person which consequently serves as the basis on which the care regime is built.