Health and Social Care in the Community, 25(6), 2017, pp.1787-1793.
Publisher:
Wiley
As identity and agency are central to the well-being of people with dementia, this paper explores whether their dialogue conveys a gendered sense of identity and agency. The author discusses whether they demonstrate not just a subjective sense of being but also an understanding of their relational selves. Findings are presented from a qualitative study in the North of England which examined...
(Publisher abstract)
As identity and agency are central to the well-being of people with dementia, this paper explores whether their dialogue conveys a gendered sense of identity and agency. The author discusses whether they demonstrate not just a subjective sense of being but also an understanding of their relational selves. Findings are presented from a qualitative study in the North of England which examined the everyday decisions made by married couples when one partner had dementia. Ethnographic methods were used, including participant observation and interviews. While dialogical analysis usually centres on the subjective self, it was also used to examine intersubjectivity. Comparisons are made between the dialogue of women and men in order to draw conclusions about the gendered nature of identity and agency. The study found that the women and men defined themselves according to their social and gender identities. The literature had suggested that agency might be a gendered concept and the study confirmed that men were somewhat individualistic and rational in their concerns, whereas women were more relational and even spiritual. Yet, women and men demonstrated emotional reflexivity. As national and international health policy prioritises living well with dementia, more systematic attention should be given to the role of gender in influencing well-being in dementia. Health and social care staff should recognise and facilitate the gender identity and related social roles of people with dementia (e.g. parent, carer and worker) in order to enhance their quality of life.
(Publisher abstract)
Families, Relationships and Societies, 6(1), 2017, pp.3-19.
Publisher:
Policy Press
Place of publication:
Bristol
This article explores whether people with dementia demonstrate emotional reflexivity within their personal relationships. Previous research has suggested that they may lose their capacity for reflection as the disease progresses. In turn, it has also been assumed that they lack the reflexive abilities necessary to exercise agency within their daily lives. The authors draw on findings from...
(Publisher abstract)
This article explores whether people with dementia demonstrate emotional reflexivity within their personal relationships. Previous research has suggested that they may lose their capacity for reflection as the disease progresses. In turn, it has also been assumed that they lack the reflexive abilities necessary to exercise agency within their daily lives. The authors draw on findings from a qualitative study of everyday decision-making by people with dementia and their spouses undertaken in England. The sample consisted of 21 couples, but to enable emotional reflexivity to be examined in depth, this article focuses on the emotional communication of six people with more advanced dementia. The research found that even when their abilities for deliberation, discourse and social interaction were limited, they could nonetheless demonstrate emotional reflexivity. As they also exhibited a capacity for imaginative agency, this suggests that intersubjectivity can be preserved in dementia even when social skills are apparently lost.
(Publisher abstract)
Subject terms:
emotions, dementia, relationships, decision making, social skills;
Disability and Society, 29(7), 2014, pp.1130-1144.
Publisher:
Taylor and Francis
People with dementia have been assumed to possess weak or even no agency. This article examines their actual potential for agency. The author draws on findings from a qualitative study of everyday decision-making by people with dementia that aimed to identify the role of social factors (such as gender) in influencing their involvement in decisions. Whilst decision-making constitutes a form...
(Edited publisher abstract)
People with dementia have been assumed to possess weak or even no agency. This article examines their actual potential for agency. The author draws on findings from a qualitative study of everyday decision-making by people with dementia that aimed to identify the role of social factors (such as gender) in influencing their involvement in decisions. Whilst decision-making constitutes a form of deliberative agency, the research also identified when agency was alternatively habituated, embodied or emotional. Existing theoretical perspectives on agency are critiqued, particularly in relation to rationality, language and individualised agency. The study highlighted that people with dementia who lack deliberative capacity can nonetheless demonstrate creative capacity for agency. A more expansive concept of agency is needed in social science theory that is informed by the experiences of cognitively disabled people.
(Edited publisher abstract)
Families, Relationships and Societies, 2(1), 2013, pp.5-21.
Publisher:
Policy Press
Place of publication:
Bristol
Progress towards gender equality within intimate relationships has been slow, evident in the persistent unequal division of household labour. Research into couples where women were physically disabled has similarly shown a lack of gender equity in housework. However, there was a gap in the evidence in relation to whether men do more housework when women develop dementia. This article presents...
(Edited publisher abstract)
Progress towards gender equality within intimate relationships has been slow, evident in the persistent unequal division of household labour. Research into couples where women were physically disabled has similarly shown a lack of gender equity in housework. However, there was a gap in the evidence in relation to whether men do more housework when women develop dementia. This article presents findings from a qualitative study in England, which explored the everyday decisions made by married couples where one partner had dementia. Twenty-one married (heterosexual) couples took part in the research. The sample consisted of 12 women and nine men with dementia and their spouses. The author examines the division of labour within the couples and identifies whether women exercised any control over who did the housework. As it was found that men were often reluctant to undertake housework when their wives developed dementia, the author concludes that gender inequality in domestic labour tends to persist, irrespective of cognitive disability.
(Edited publisher abstract)
Subject terms:
gender, dementia, decision making, activities of daily living, partners;
Journal of Social Welfare and Family Law, 35(2), 2013, pp.227-243.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA
The Mental Capacity Act 2005 clarifies the decision-making rights of people lacking capacity (such as people with dementia) and requires that carers and professionals support the individual in making decisions. This paper reports key findings from a qualitative study in England (funded by the Economic and Social Research Council) which examined the social process of everyday decision-making...
(Edited publisher abstract)
The Mental Capacity Act 2005 clarifies the decision-making rights of people lacking capacity (such as people with dementia) and requires that carers and professionals support the individual in making decisions. This paper reports key findings from a qualitative study in England (funded by the Economic and Social Research Council) which examined the social process of everyday decision-making by twenty-one married couples living with dementia. The author identifies the various support strategies used by spouses when seeking to facilitate decision-making by their partners with dementia and highlights how these varied by gender. The paper examines the role of gendered support in influencing whether people with dementia are enabled to exercise their decision-making capacity and, in turn, if their decisional autonomy is facilitated. As the Mental Capacity Act lacks a gender perspective, the author recommends that its ongoing implementation should be strongly gendered to ensure that women with dementia receive the support necessary to exercise their capacity and agency.
(Edited publisher abstract)
Health and Social Care in the Community, 21(5), 2013, p.554–562.
Publisher:
Wiley
This article explores how married couples managed their finances and made financial decisions when one spouse had dementia, drawing comparisons with the approaches used prior to the illness. More specifically, the article examines the role of social factors in influencing the involvement of people with dementia in financial management and decision-making, particularly whether a gender dynamic...
(Publisher abstract)
This article explores how married couples managed their finances and made financial decisions when one spouse had dementia, drawing comparisons with the approaches used prior to the illness. More specifically, the article examines the role of social factors in influencing the involvement of people with dementia in financial management and decision-making, particularly whether a gender dynamic adopted earlier in a marriage similarly influenced a gendered approach following dementia. The research formed part of a larger study of everyday decision-making by couples living with dementia which explored the role of non-cognitive factors in influencing whether people with dementia were involved in decision-making processes. Twenty-one married couples living at home took part; the recently-diagnosed were excluded. Qualitative methods -including participant observation and interviews - were used to examine the couples’ fiscal management and decision-making-processes, the perceptions of people with dementia and their spouses about their current financial abilities and whether any support provided by spouse-carers influenced their partners’ financial capacity. The fieldwork was undertaken in the North of England between June 2010 and May 2011. Thematic analysis of the data showed that social factors influenced the perceived capacity of people with dementia and the financial practices adopted by the couples. In particular, gender influenced whether people with dementia were involved in financial decisions. The research demonstrated that non-cognitive factors need to be taken into account when assessing and facilitating the capacity of people with dementia. In addition, as people with dementia were somewhat marginalised in decisions about designating financial authority (Lasting Power of Attorney), spouse-carers may need guidance on how to undertake advance care planning and how to support their relatives with dementia in major decision-making, particularly when there are communication difficulties.
(Publisher abstract)
Journal of Dementia Care, 20(6), November 2012, pp.19-21.
Publisher:
Hawker
The Mental Capacity Act 2005 gives decision-making rights to adults who lack capacity, makes clear when capacity needs to be determined before decisions are made on behalf of another person, and clarifies who can make decisions on their behalf. This article describes the findings of a national study that aimed to establish how the Mental Capacity Act is working for those on the front-line in complex decision-making situations. The study was undertaken in 4 areas of England and involved 3 stages: an online survey completed by 385 professionals; a telephone survey of 68 professionals; and a survey in which various professionals and carers involved in 25 cases were interviewed. The findings show that the Mental Capacity Act was welcomed by most participants who felt that it gave greater clarity to a confusing area of practice. Overall, health and social care staff are following the statutory guidance when making decisions. However, a significant minority of best interest decisions were being made for people who had either been shown to have capacity, had been wrongly accessed as lacking capacity, or could have been supported to make decisions with help. A number of recommendations are made for improving policy and practice.
The Mental Capacity Act 2005 gives decision-making rights to adults who lack capacity, makes clear when capacity needs to be determined before decisions are made on behalf of another person, and clarifies who can make decisions on their behalf. This article describes the findings of a national study that aimed to establish how the Mental Capacity Act is working for those on the front-line in complex decision-making situations. The study was undertaken in 4 areas of England and involved 3 stages: an online survey completed by 385 professionals; a telephone survey of 68 professionals; and a survey in which various professionals and carers involved in 25 cases were interviewed. The findings show that the Mental Capacity Act was welcomed by most participants who felt that it gave greater clarity to a confusing area of practice. Overall, health and social care staff are following the statutory guidance when making decisions. However, a significant minority of best interest decisions were being made for people who had either been shown to have capacity, had been wrongly accessed as lacking capacity, or could have been supported to make decisions with help. A number of recommendations are made for improving policy and practice.
Subject terms:
mental capacity, mental health law, professional role, decision making, dementia;
Critical Social Policy, 31(3), August 2011, pp.365-387.
Publisher:
Sage
...its overall aim of facilitating decision-making by people lacking capacity, focusing on people with dementia. The author suggests that the initial implementation of the Act and the related Deprivation of Liberty Safeguards has had only limited effectiveness in facilitating decision-making by people lacking capacity, promoting their best interests and protecting their liberty. The article concludes
This article examines the early implementation of the Mental Capacity Act 2005 in England and the application of this by health and social care staff. The article looks at the research evidence to date, with particular attention to monitoring data from the Department of Health, in order to evaluate the progress made in implementation. The article discusses the extent to which the Act is achieving its overall aim of facilitating decision-making by people lacking capacity, focusing on people with dementia. The author suggests that the initial implementation of the Act and the related Deprivation of Liberty Safeguards has had only limited effectiveness in facilitating decision-making by people lacking capacity, promoting their best interests and protecting their liberty. The article concludes by noting that future implementation needs to safeguard the rights of people lacking capacity and are taken more seriously in health and social care and are better protected – particularly people with dementia
Subject terms:
mental capacity, safeguarding adults, decision making, dementia, Deprivation of Liberty Safeguards, government policy, Mental Capacity Act 2005;
Health and Social Care in the Community, 18(5), September 2010, pp.511-519.
Publisher:
Wiley
Academic discourse on the human rights of those with mental illness generally focuses on those under the age of 65. This article discusses whether current UK social policy promotes the human rights of older people with dementia living in England. The author emphasises the role of recent legal reforms and key developments in social care policy, especially the Mental Capacity Act 2005 and the 2009...
Academic discourse on the human rights of those with mental illness generally focuses on those under the age of 65. This article discusses whether current UK social policy promotes the human rights of older people with dementia living in England. The author emphasises the role of recent legal reforms and key developments in social care policy, especially the Mental Capacity Act 2005 and the 2009 National Dementia Strategy, in facilitating their human rights to liberty and self-determination – particularly a right to choose to live at home. The author also critiques the extent to which the National Dementia Strategy provides access to services and support which provide an alternative to institutional care. It is suggested that, although recent legislative change has endorsed the rights of people with dementia to liberty and self-determination, there is a lack of commitment in government policy more generally to providing access to social care to enable people with dementia to exercise these human rights.
Subject terms:
home care, human rights, mental capacity, older people, self-determination, social policy, dementia, government policy;
Health and Social Care in the Community, 17(4), July 2009, pp.415-422.
Publisher:
Wiley
...their implementation. In particular, the potential impact of planned unitary regulation on the regulator's ability to protect residents' liberty is critiqued, centring on people with dementia living in care homes. It is suggested that the capacity of the safeguards to adequately protect the liberty of residents with dementia may be limited by under-recognition of the extent to which deprivation of liberty can
The Mental Capacity Act 2005 introduced legal safeguards (which came into force in April 2009) aimed at protecting the liberty of people lacking capacity admitted to institutions in England and Wales. This paper discusses the adequacy of the Deprivation of Liberty Safeguards for protecting the liberty of residents in social care settings and the role of regulation in monitoring their implementation. In particular, the potential impact of planned unitary regulation on the regulator's ability to protect residents' liberty is critiqued, centring on people with dementia living in care homes. It is suggested that the capacity of the safeguards to adequately protect the liberty of residents with dementia may be limited by under-recognition of the extent to which deprivation of liberty can actually occur in care homes, insufficient resourcing and a lack of critical independence in their proposed implementation. In addition, the planned contraction of regulation – especially a reduction in inspections – will constrain the regulator's ability to ensure that residents' right to liberty is protected. The author concludes that the new model of regulation adopted by the UK government has prioritised economic efficiency over safeguarding the right to liberty of vulnerable residents in institutions.
Subject terms:
human rights, mental capacity, mental health law, vulnerable adults, safeguarding adults, care homes, compulsory detention, costs, dementia, Deprivation of Liberty Safeguards, Mental Capacity Act 2005;