Ageing, dementia and the future – ambivalent futurework in rehabilitation-focused dementia care

Thuesen, Jette; Graff, Lea

doi:10.1177/14713012221117412

Cited by 5 publications

(4 citation statements)

References 47 publications

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“…It is possible that the unpleasant prospect of cognitive and physical decline that would precipitate a need for care also led to participants emphasising their present abilities and the uncertainty of the future. This chimes with findings from earlier studies that people, with or without dementia, live for the present and avoid thinking about a future that is both uncertain and unappealing (Hellström and Torres, 2016;Heavey et al, 2019;Crawley et al, 2022;Thuesen and Graff, 2022). The findings also confirmed research that people are uncertain about their skills and knowledge for making appropriate decisions or seeking relevant advice (Baxter et al, 2018(Baxter et al, , 2020b, and this uncertainty can lead to hesitancy.…”

Section: Discussionsupporting

confidence: 85%

“…However, there is a high level of uncertainty about how quickly, for any particular individual, dementia will progress and the nature of increased need. There is evidence that many people with dementia prefer to focus on the here and now (Dickinson et al, 2013;Hellström and Torres, 2016) or actively avoid people and places associated with more advanced dementia in order to maintain some distance from their potential futures (Thuesen and Graff, 2022). But it is also increasingly clear that many people with dementia are concerned about their future living arrangements, often expressing a preference to stay living independently at home rather than move to residential care (Heaton et al, 2021).…”

Section: Introductionmentioning

confidence: 99%

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The role of uncertainty in planning for self-funded social care for older people with a diagnosis of dementia

Baxter,

Gridley,

Birks

2023

Ageing and Society

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This paper considers how a diagnosis of dementia affects people's planning for future social care needs and associated costs. It addresses the gap in knowledge about how people recently diagnosed with dementia, and their family carers, engage with planning for social care needs that are uncertain in timing and scale. The paper also considers people's attitudes to planning for care that they may need to pay for privately, and what facilitates or hinders acting on such plans. We conducted and undertook thematic qualitative analysis of 39 in-depth interviews with 27 people newly diagnosed with dementia and/or their carers over a two-year period. Topics included current care and support, planning and co-ordinating care, paying for care, and expectations and planning for the future. The research took place in England. Our findings indicate that whilst people recognised they would have future care needs, with associated financial implications, this knowledge did not necessarily translate into actively planning for care or its cost. A key reason that recognition did not translate into action was uncertainty, manifested in three areas: the timescales and trajectory of their dementia and thus need for care; the potential for care needs to change and so negate care planning efforts; and uncertainty over their own capabilities to plan for and access paid-for care, given the perceived complexity of social care and associated financial arrangements. The paper discusses how anticipated regret may affect decision-making and contributes to debates about appropriate professional support for older self-funders with dementia. It suggests the task for those involved in the care of people with dementia is to identify the points and places in the care system where worries about future self-funded care can be addressed, and carers and the people they care for can be prompted and supported to act.

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Section: Discussionsupporting

confidence: 85%

Section: Introductionmentioning

confidence: 99%

The role of uncertainty in planning for self-funded social care for older people with a diagnosis of dementia

Baxter,

Gridley,

Birks

2023

Ageing and Society

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“…People with dementia have shifting needs and wishes at different times and over the trajectory of dementia ( Hodgson et al, 2014 ). They may also simultaneously have ambivalent expectations to their future ( Thuesen & Graff, 2022 ) and the co-existence of multiple narratives may increase the opportunities to take care of different needs. However, if rehabilitation is to be an actually option for people with dementia, it is necessary to discuss both the structural frames for and the prevailing understandings of personhood within the organizational narratives in dementia care.…”

Section: Discussionmentioning

confidence: 99%

Organizational narratives in rehabilitation-focused dementia care – Negotiating identities, interventions and personhood

2023

Self Cite

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Background Rehabilitation is increasingly being introduced in dementia care but studies highlight extensive heterogeneity in practices, conceptual confusion and divergent perceptions of its relevance across care organizations and national contexts. As this have implications for development of dementia care as well as for people with dementia’s access to care it is important to study the organizational narratives and practices in rehabilitation-oriented dementia care organizations. Methods The study build on qualitative interviews (individual and group interviews) with health professionals (N = 26) engaged with dementia care and rehabilitation in two Danish municipalities. The interviews were conducted in 2018–2019. The empirical data was analyzed using abductive analysis and theory-based narrative analysis, using Loseke’s conceptualizations of and approach to analyzing formula stories. Findings Four dominant organizational narratives were constructed from the data. Each narrative produced a specific organizational narrative of client identity: the active participant in individualized rehabilitation, the inactive individual benefitting from enhanced social environments, the disengaging self and the vulnerable self. Conclusion Introducing rehabilitation in dementia care may amplify the organizational polyphonic and provide a plurality of organizational identities each expressing different perceptions of personhood and agency for people with dementia. The organizational narratives were negotiated within a specific structural context where national regulation and dominant discourses on economic challenges and ageing gave precedence to some narratives more than others. In Danish elder care, the first narrative is the most influential but risks excluding people with dementia. Instead, rehabilitation in dementia care is positioned within a social and relational perspective, which may silence important discussion of agency and resistance.

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“…Ambivalence has been used in aging studies to cut through simplistic dichotomies, for example, in understanding conflicting feelings toward the future in people living with dementia ( Thuessen & Graff, 2022 ). It has also been used in research on intergenerational relationships as a “bridging concept between social structure and individual action” ( Connidis & McMullin, 2002 , p. 559), that also has a “dynamic, transformative and temporal dimension” ( Hillcoat-Nallétamby & Phillips, 2011 , p. 214).…”

Section: Ambivalence and Intergenerational Relationshipsmentioning

confidence: 99%

Understanding Nuance and Ambivalence in Intergenerational Relationships Through Fiction

2023

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The term ‘intergenerational relationships’ is widely used in gerontological literature and age-related policies. However, discussions of the term often tell us surprisingly little about what it means or why it matters. We suggest that this is due to a reductivism and instrumentalism in two main discourses within which intergenerational relationships are usually discussed. Firstly, intergenerational relationships are often conceptualised through a binary ‘conflict / solidarity’ lens, reinforcing an entrenched ‘generationalism’ (White, 2013). Secondly, they are predominantly constructed as a problem to be addressed within debates on how to tackle intergenerational segregation. Neither of these discourses provides much room for a more nuanced understanding of how intergenerational relationships are experienced or why they are meaningful. In this paper, we discuss how fictional narratives can introduce imagination and a richer vocabulary into discourses concerning how people of different ages relate to each other. We present findings from reading groups where adults discussed novels depicting themes of older age, intergenerational relationships, and time. In discussing the fictional narratives and characters, participants reflected on the significance and meaning of intergenerational relationships in ways that went beyond dichotomous and instrumentalist discourses. Drawing on the concept of lived ambivalence (Baars, 2014) we argue that fictional representations of intergenerational themes can elicit more meaningful reflections on the complexities and contradictions of relationships across age groups. We conclude that a more nuanced understanding of intergenerational interaction can inform gerontological discourses and policy, but also that gerontological awareness of social challenges concerning age-relations can inform interpretations of fictional narratives.

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Ageing, dementia and the future – ambivalent futurework in rehabilitation-focused dementia care

Cited by 5 publications

References 47 publications

The role of uncertainty in planning for self-funded social care for older people with a diagnosis of dementia

The role of uncertainty in planning for self-funded social care for older people with a diagnosis of dementia

Organizational narratives in rehabilitation-focused dementia care – Negotiating identities, interventions and personhood

Understanding Nuance and Ambivalence in Intergenerational Relationships Through Fiction

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