Renegotiating relationships: Theorising shared experiences of dementia within the dyadic career

Sociology Health & Illness

2020

Self Cite

Transitions into informal care roles are associated with various characteristics, for example gender and geographic proximity, but such associations are insufficient to explain role delegation, overlooking the interpersonal structure–agency nexuses that constitute role trajectories. This paper explores unequal role delegation within 7 families affected by dementia, presenting data from interviews with 7 people with dementia and 26 carers living in the community in the United Kingdom. Two key care roles are identified: the relatively un‐involved role of peripheral actors and the lynchpin role of main carers who take on most of the care tasks. These roles emerge from negotiations around a range of extraneous factors that collectively comprise cumulative baggage, including historic conflicts and childcare commitments. The unequal distribution of care reflects widely noted demographic associations with role delegation, but is enacted and justified through the interpersonal negotiation of personalised meanings regarding individual circumstances and suitability. Though deeply personal when taken at face value, these meanings imbibe sociocultural norms and political economies of care to structurally position family members in relation to each other and signpost appropriate candidates for caring roles, even before such care is required.

Section: Discussionmentioning

confidence: 99%

Section: Relative Un-involvementmentioning

confidence: 99%

Structuring unequal relations: role trajectories in informal dementia care

Sociology Health & Illness

2020

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“…Concerns about future care repeatedly motivated the sustained surveillance of people with dementia. This echoes 'boundary-setting' in informal care, whereby carers identify future circumstances when they seek institutional care (Fletcher, 2020c). Expected future events, e.g.…”

Section: Expectant Surveillancementioning

confidence: 98%

“…Since the 1990s, much social dementia research has been informed by symbolic interactionism (Fletcher, 2018), focusing on dementia as an interacted experience inhabiting interpersonal relationships (Bartlett & O'Conner, 2010). It encompasses work on personhood and person-centredness (Kitwood, 1997), selfhood (Sabat, 2001), embodiment (Kontos, 2004), dress (Twigg, 2010), identity (Beard, 2016), social experience (Brossard, 2019), moral careers and deviance (Fletcher, 2019b(Fletcher, , 2019c(Fletcher, , 2020c. Scholars have drawn on interactionism's resonance with interpersonal meaning-making processes that shape dementia.…”

Section: Situational Expectationsmentioning

confidence: 99%

Situational expectations and surveillance in families affected by dementia: organising uncertainties of ageing and cognition

Health Sociology Review

2021

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Recent political processes have rendered people with dementia an increasingly surveilled population. Surveillance is a contentious issue within dementia research, spanning technological monitoring, biomarker research and epidemiological data gathering. This paper explores surveillance in the relationships of people affected by dementia, how older relatives both with and without diagnoses are surveilled in everyday interactions, and the importance of expectations in guiding surveillance. This paper presents data from 41 in-depth interviews with people affected by dementia living in the community in the United Kingdom. Agedness was a key contributor to expectations that a person may have dementia, based on previous experiences, media accounts and wider awareness. Expectations provoked surveillance in interactions, with participants looking for signs of dementia when interacting with older relatives. Older people also enacted selfsurveillance, monitoring their own behaviour. Various actions could be attributed to dementia because interpretation is malleable, partly vindicating expectations while leaving some uncertainties. Expectant surveillance transformed people's experiences because they organised their own actions, and interpreted those of others, in line with pre-existing meanings. The ability to interpret behaviours to fit expectations can bring coherence to uncertainties of ageing, cognition and dementia, but risks ascribing dementia to many older people who straddle those uncertainties.

“…While stigma is not a central topic in my research on people's experiences of dementia (see Fletcher, 2018aFletcher, , 2019aFletcher, , 2019b, I have often considered the aforementioned claims that dementia is heavily stigmatised during interviews with people with dementia and their carers. People typically use the word 'stigma' when arguing that dementia is generally viewed negatively, a tendency noted in other studies (e.g.…”

Section: Felt and Enacted Stigmamentioning

confidence: 99%

Destigmatising dementia: The dangers of felt stigma and benevolent othering

2019

Dementia

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The destigmatisation of dementia through awareness raising campaigns and associated activities has become a key pillar of dementia studies and related activism. This anti-stigma agenda is undermined by a poor evidence base and inadequate operationalisations of stigma. Scambler's distinction between felt stigma and enacted stigma provides a conceptual basis for improvement. Felt stigma encompasses negative self-appraisals and fears regarding the reactions of others, while enacted stigma describes active discriminatory behaviours. Awareness campaigns based around high-profile spokespeople and pathology-based models of dementia may effectively tackle enacted stigma, but they may also unintentionally exacerbate felt stigma. Distinguishing people with dementia as an exceptional group to elicit public sympathies promotes benevolent othering, unwittingly implying their negative otherness. This is problematic because felt stigma is typically more prevalent and deleterious to wellbeing than enacted stigma.