X. Refusing to live with advanced dementia: Contemporaneous and prospective decision-making

Wilkinson, Sue

doi:10.1177/0959353514562809

Cited by 5 publications

(6 citation statements)

References 10 publications

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“…In hospitals and care homes, people with dementia may suffer from terrible boredom, lack of access to nature and the outdoors, lack of pain relief, malnourishment, dehydration, abuse or mistreatment (Care Quality Commission, 2013; Alzheimer's Society, 2013b; Alzheimer's Disease International, 2014; Peisah et al ., 2014). Some individuals diagnosed with dementia may even choose to take their own lives because the future looks too bleak (Wilkinson, 2015). This is what happened to Lore Windemuth-Wolfson's husband.…”

Section: Causes Of Suffering For People With Dementiamentioning

confidence: 99%

Suffering with dementia: the other side of “living well’’

Bartlett

Windemuth-Wolfson²,

Oliver

et al. 2017

Int. Psychogeriatr.

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In this editorial, we challenge the current understanding of “Living Well with Dementia.” Such discourse introduces the possibility of not living well with the condition or even of “living badly with dementia.” Numerous words might be relevant here – grief, pain, anguish, depression – but in this editorial we consciously use the word “suffering.” This term is used for two reasons; one, because it captures the attributes of other more limited words, and, two because the language of “suffering” is contentious, making it suitable for debate. We speak of suffering, not to deny the positive aspects of life with dementia or to concentrate just on the negative, but to redress the balance that is disturbed by a relentlessly positive view of living with the condition. Our aim is to promote a more realistic understanding of the dementia experience, one based on actualities and evidence rather than presumption and sentiment.

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Section: Causes Of Suffering For People With Dementiamentioning

confidence: 99%

Suffering with dementia: the other side of “living well’’

Bartlett

Windemuth-Wolfson²,

Oliver

et al. 2017

Int. Psychogeriatr.

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“…Furthermore, as with other major health conditions, it is predominantly women who take on the role of caring for someone with dementia; studies suggest that in most countries up to three quarters of family caregivers are women (Bamford ). For these reasons, dementia has recently come to the attention of feminists (Wilkinson ); in that, it represents a struggle for resources and an unequal division of labour (Freedman ).…”

Section: Introductionmentioning

confidence: 99%

Gender, citizenship and dementia care: a scoping review of studies to inform policy and future research

Bartlett

Gjernes

Lotherington

et al. 2016

Health Soc Care Community

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What is known about this topic• Gender is a neglected dimension in public discourse about dementia.• Gender is a key factor structuring the lives of those living with dementia.• There are gender differences in the care-giving experience. What this paper adds• A critical review of the research literature on gender differences in dementia care from a feminist citizenship perspective.• Insights into the gaps in the research literature.• Recommendations as to how policy makers can incorporate gender into national plans. AbstractGender is a neglected dimension in public discourse related to people with dementia. Those living with this condition are typically portrayed in policies and strategies in gender neutral terms as 'people with dementia' and 'family carers' as if gender does not matter, when clearly it does. The purpose of this scoping review was to take stock of knowledge about gender differences in relation to dementia care to inform policy and future research. The work is grounded in a feminist perspective to citizenship, as this provide a lens with which to expose and examine gendered assumptions within dementia studies. A search of four databases, including CINAHL, Web of Science, Medline and Cochrane was conducted using systematic techniques between May and July 2014. A repeat search was conducted in February 2015. We found a significant amount of valuable research concerned with gender differences in relation to dementia care published from 1990 to 2014; the majority of which lacks a feminist citizenship perspective. Moreover, a disproportionate number of studies focused solely on caregivers rather than citizens with dementia. As such, questions about gender equality are not being raised and the voices of men and women with dementia are silent. Thus we argue for increased gender-sensitivity in policy making and recommend that social scientists inject a feminist citizenship perspective into their work.

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“…I have focused here on daughters and sons interview and focus group talk about caring and highlighted some of the ways in which normative familial roles, responsibilities and 'duties' are fractured and reconfigured in the context of dementia care. There are many difficulties that form part of informal dementia carers' experiences -including behavioural and psychological symptoms (Harding and Peel 2013), incontinence (Drennan et al 2011), financial management (Langan and Means 1996), and difficult decisions towards the end of life (Wilkinson 2015). Whilst there is much to be done to explore the perspectives of people with dementia themselves, especially women who are disproportionately affected both directly and as formal and informal carers (Erol, Brooker and Peel 2015), this analysis has offered a perspective on family dynamics and the processes and practices of caring more broadly.…”

Section: Discussionmentioning

confidence: 99%

‘It has had quite a lot of reverberations through the family’: reconfiguring relationships through parent with dementia care

Harding¹,

Fletcher²,

Beasley³

2016

ReValuing Care in Theory, Law and Policy

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In this chapter I explore the accounts of adult children caring for a parent with dementia. Dementia is typically understood to be an umbrella term for a large number of conditions, the most common of which are Alzheimer's disease, vascular dementia and fronto-temporal dementia. These are progressive-ultimately terminal-conditions that affect memory, communication, mood and behaviour. I examine the accounts of interactions with parents with dementia that fracture and reconfigure normative familial relationships. In so doing I suggest that, in the absence of a primary spousal carer, caring for a person living with dementia can necessitate particular issues for adult children that trouble notions of how we understand familial roles, responsibilities and 'duties'. This issue impacts a significant minority of British adults. There are estimated to be 670,000 informal family carers of people living with a dementia in the UK (Alzheimer's Society 2013). The total cost of dementia to UK society is estimated to be £26.3 billion, with £11.6 billion being contributed by the work of unpaid carers (Prince et al. 2014). Unpaid care to older or disabled people provided by family member is typically understood to encompass personal care and/or practical household tasks and/or paperwork and administrative duties. A classic memorial lecture given by Elaine Brody (1985) reflecting on the state of gerontological research in the USA thirty years ago has many current resonances. Brody argued that 'parent care has become a normative but stressful experience for individuals and families'. And, moreover, she suggested that the experience of caring for a parent was not a brief or short-term concern for adult children, but rather that 'it is long-term parent care that has become a normative experience-expectable, though usually unexpected' (p.19/21 original emphasis). What is interesting and resonates today, I would suggest, is the © Peel, E. (2017) 'It has had quite a lot of reverberations through the family': Reconfiguring relationships through parent with dementia care. In R. Harding, R. Fletcher & C. Beasley (Eds.) Revaluing Care in Theory, Law and Policy: Cycles and Connections. London: Routledge. 'highlighted the ways in which stress related to having a father with dementia proliferates and affects almost every area of life, leading to very high levels of distress' (Allen et al. 2009, p. 477). Therefore, it is important to recognise that parent care in the context of dementia is not solely the preserve of middle-aged adults onwards, although numerically this is the largest group of familial carers in this context.

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X. Refusing to live with advanced dementia: Contemporaneous and prospective decision-making

Cited by 5 publications

References 10 publications

Suffering with dementia: the other side of “living well’’

Suffering with dementia: the other side of “living well’’

Gender, citizenship and dementia care: a scoping review of studies to inform policy and future research

‘It has had quite a lot of reverberations through the family’: reconfiguring relationships through parent with dementia care

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