Geraldine Boyle

The Mental Capacity Act 2005 : promoting the citizenship of people with dementia?

The Mental Capacity Act 2005 came into force in England and Wales during 2007. The Act enshrines a legal right to autonomy (negative and positive) of people lacking decision-making capacity, such as people with dementia. This paper examines the extent to which the legislation promotes the social citizenship of people with dementia, focusing on its effectiveness in protecting liberty and promoting self-determination and in providing social rights to facilitate autonomy. In particular, the author considers the degree to which the Act will facilitate decision-making by people with dementia, centring on decisions relating to where to live (at home or in an institution). In addition, the historical detention (usually informal) of people with dementia in institutional care, and the role of the Act in promoting recognition of their right to liberty, is highlighted. However, the author points out that the civil rights to liberty and self-determination accorded under the Act--particularly the right to decide where to live--are restricted rights only, as the views of the person lacking capacity can be over-ridden by the decisions of others. In addition, the facilitation of these civil rights is constrained by a lack of access to social rights, particularly the availability of domiciliary and community services to avoid institutional admission. Consequently, whilst the legislation promotes the social citizenship of people with dementia, it has limited capacity to facilitate their full citizenship status.

The role of autonomy in explaining mental ill-health and depression among older people in long-term care settings

This paper examines the extent of mental ill-health and probable depression among older people in long-term care. It presents selected findings from a study in Greater Belfast, Northern Ireland, that compared the quality of life, autonomy and mental health of older people living in nursing and residential homes with those of older people living in private households who were receiving domiciliary care. Structured interviews were conducted with 214 residents in institutions and 44 older people receiving domiciliary care. The study found that those in private households were more severely physically-impaired and had a higher level of mental ill-health than the residents of institutional homes. It is suggested, however, that the mental ill-health effects were associated less with physical impairments than with the restrictions placed on the older persons decisional autonomy, and that long-term care environments that constrain the older persons autonomy contribute to the development of depression. Although the UK National Service Framework for Older People specified that those with depression should be given treatment and support, priority should also be given to preventing the depression associated with living in long-term care settings.

Autonomy in long‐term care: a need, a right or a luxury?

Doyal and Gough’s theory of human need highlighted that personal autonomy is a universal need and human right, essential for well‐being. In applying their theory to older disabled people in the UK the author suggests that their ‘minimally autonomous’ threshold would exclude some older people in long‐term care who still have a fundamental need for autonomy or, alternatively, extant autonomy. The disability movement has highlighted that independent living is fundamental to achieving self‐determination for disabled people and debate on equality and caregiving emphasises the autonomy of carers. However, there is a lack of recognition in both academic research and government policy of autonomy as a need and right of older disabled people. The author argues that autonomy is a human right of older people living in long‐term care settings, but that social rights are necessary to facilitate their autonomy.

Recognising the agency of people with dementia.

People with dementia have been assumed to possess weak or even no agency, so this paper provides a novel contribution to academic debate by examining 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. The Economic and Social Research Council-funded research was undertaken in the North of England. 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.

Facilitating decision-making by people with dementia: is spousal support gendered?

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 which examined the social process of everyday decision-making by 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.

Social policy for people with dementia in England: promoting human rights?

This paper discusses whether current UK social policy promotes the human rights of people with dementia living in England. The author focuses on the role of recent legal reforms and key developments in social care policy--notably 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 extent to which the National Dementia Strategy provides access to services and support which provide an alternative to institutional care is critiqued. Whilst recent legislative change has endorsed the rights of people with dementia to liberty and self-determination, it is suggested 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.

Still a woman's job: the division of housework in couples living with dementia

Progress towards gender equality within intimate relationships has been slow, evident in the persistent unequal division of household labour. Previous studies have primarily focused on non-disabled couples, but 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. 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.

Early Implementation of the Mental Capacity Act 2005 in Health and Social Care

This paper discusses the early implementation of the Mental Capacity Act 2005 in health and social care in England. The author examines the research evidence to date, particularly monitoring data from the Department of Health, in order to review the progress made in implementation. The extent to which the Act is achieving its overall aim of facilitating decision-making by people lacking capacity is discussed, focusing on people with dementia. The author concludes 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. Future implementation needs to ensure that the rights of people lacking capacity, particularly people with dementia, are taken more seriously in health and social care and are better protected.

Controlling behaviour using neuroleptic drugs: the role of the Mental capacity act 2005 in protecting the liberty of people with dementia

The use of neuroleptic drugs to mediate the behaviour of people with dementia living in care homes can lead to them being deprived of their liberty. Whilst regulation has been successful in reducing neuroleptic prescribing in the USA, policy guidance has been unsuccessful in reducing the use of these drugs in the UK. Yet the Mental capacity act 2005 aimed to protect the liberty of people lacking capacity and provided safeguards to ensure that they are not inappropriately deprived of their liberty in institutions. This article highlights the potential for using this law to identify when neuroleptic prescribing in care homes would deprive people with dementia of their liberty and, in turn, to act as a check on prescribing levels. However, the extent to which the Act can promote and protect the right to liberty of people with dementia is constrained by a lack of access to social rights.

Revealing gendered identity and agency in dementia

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.