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)
Based on papers from a research workshop at the Centre for Research on Personhood in Dementia, this book brings together the views of experts in dementia care, law, ethics and philosophy to explore some of the issues surrounding this topic. A key dilemma in the care of people with dementia is trying to determine when an individual is no longer capable of making particular decisions or taking...
Based on papers from a research workshop at the Centre for Research on Personhood in Dementia, this book brings together the views of experts in dementia care, law, ethics and philosophy to explore some of the issues surrounding this topic. A key dilemma in the care of people with dementia is trying to determine when an individual is no longer capable of making particular decisions or taking specific actions. This debate usually concentrates on capacity or competence. In these papers the authors aim to broaden the discussion by exploring the wider concept of personhood and suggest that understanding decision making in dementia requires moving beyond a simple focus on rational, cognitive ability. The book is organised into three sections: exploring ways of conceptualising the issues, examining practice and policy issues, and uncovering the complexities associated with the day to day experience of living with dementia. The book is expected to be of interest to dementia researchers, healthcare professionals, service providers, policy makers and legal professionals.
This guidance is for those considering the use of technology to assist with care and maintain independence when the individual concerned may lack the capacity to make the decision. It examines the human right and legal implications of assistive technology and sets out key principles of good practice. These are: the intervention must provide a benefit that cannot otherwise be achieved; it must be the least restrictive in relation to the person’s freedom in order to achieve the desired benefit; the past and present wishes of the person must be taken into account; the views of relevant others should be taken into account; and the intervention should encourage the person to use existing skills and develop new ones. The document examines the use of electronic location devices and the use of CCTV to monitor the actions of an adult or of staff. A brief overview of assistive technology currently available is also included.
(Edited publisher abstract)
This guidance is for those considering the use of technology to assist with care and maintain independence when the individual concerned may lack the capacity to make the decision. It examines the human right and legal implications of assistive technology and sets out key principles of good practice. These are: the intervention must provide a benefit that cannot otherwise be achieved; it must be the least restrictive in relation to the person’s freedom in order to achieve the desired benefit; the past and present wishes of the person must be taken into account; the views of relevant others should be taken into account; and the intervention should encourage the person to use existing skills and develop new ones. The document examines the use of electronic location devices and the use of CCTV to monitor the actions of an adult or of staff. A brief overview of assistive technology currently available is also included.
(Edited publisher abstract)
Subject terms:
assistive technology, good practice, dementia, learning disabilities, mental capacity;
NATIONAL INSTITUTE FOR HEALTH RESEARCH. School for Social Care Research
Publisher:
NIHR School for Social Care Research
Publication year:
2015
Pagination:
4
Place of publication:
London
Summarises findings from a study on how direct payments (DPs) are operating for people who lack capacity to consent (termed 'indirect payments') and are living with learning disabilities or dementia. Semi-structured interviews were used to explore experiences of indirect payments with samples of practitioners (67) and 'suitable people' (18) in six English local authorities. The interviews asked...
(Edited publisher abstract)
Summarises findings from a study on how direct payments (DPs) are operating for people who lack capacity to consent (termed 'indirect payments') and are living with learning disabilities or dementia. Semi-structured interviews were used to explore experiences of indirect payments with samples of practitioners (67) and 'suitable people' (18) in six English local authorities. The interviews asked why people choose an indirect payment; looked at the application of the Mental Capacity Act by local authorities; and the identification and role of the suitable person. People in the study had chosen indirect payments for several reasons, often to avoid inadequate alternative services and/or to ensure meaningful activity for the disabled person. Identifying a suitable person to act on behalf of the person who lacked capacity to consent was usually done informally, often because they were a family member and already involved in managing their relative's services. Differences were identified in processes between people with learning disabilities and those living with dementia. People with dementia were often 'given' a plan which assumed minimum care needs and was not aspirational in nature. Whereas people with learning disabilities would often have some form of person-centred planning. The study also found limited on-going support for suitable people, and a lack of clarity among practitioners on the application of the Mental Capacity Act (2005). Additional information, training and support to help suitable people become fully engaged in the whole direct payment process, as well as more support and training for practitioners. It also suggests some of the person-centred practices common among people with learning disabilities could be adopted for people with dementia.
(Edited publisher abstract)
Subject terms:
direct payments, mental capacity, learning disabilities, dementia, local authorities;
Journal of Social Welfare and Family Law, 34(4), 2012, pp.425-442.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA
In this paper, the author explores the operation of the Mental Capacity Act 2005 and the 'right to autonomy' for people with dementia. The paper discusses conceptual understandings of and approaches to autonomy, including individual autonomy, relational autonomy, and a person-centred relational approach to autonomy. It uses discourse analysis to analyse judicial language in a recent case about...
In this paper, the author explores the operation of the Mental Capacity Act 2005 and the 'right to autonomy' for people with dementia. The paper discusses conceptual understandings of and approaches to autonomy, including individual autonomy, relational autonomy, and a person-centred relational approach to autonomy. It uses discourse analysis to analyse judicial language in a recent case about where a person with dementia should live involving consideration of the capacity of a person with dementia to make decisions for herself (Dorset County Council v EH 2009), using illustrative quotations from the case. It considers autonomy in judicial discourse about dementia, discourses of dementia, autonomy and relationality, and preserving autonomy for people with dementia. The author argues that relational autonomy should be revised to include insights from person-centred care in order to empower decision making for people with dementia and improve the ways that dementia is understood in law.
Subject terms:
mental capacity, mental health law, person-centred care, decision making, dementia;
Journal of Social Welfare and Family Law, 34(4), 2012, pp.425-442.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA
The provisions of the Mental Capacity Act 2005 (MCA) sought to allow more decisions to be made by those who are situated at the margins of capacity. This paper explores the operation of the MCA for people with dementia through a discursive analysis of how different conceptual understandings of autonomy in law can make a difference to the lives of people with dementia. It begins...
The provisions of the Mental Capacity Act 2005 (MCA) sought to allow more decisions to be made by those who are situated at the margins of capacity. This paper explores the operation of the MCA for people with dementia through a discursive analysis of how different conceptual understandings of autonomy in law can make a difference to the lives of people with dementia. It begins with an interrogation of conceptual approaches of autonomy, highlighting 2 contrasting frameworks for understanding the capacity to make decisions: ‘individual’ and ‘relational’ autonomy. It is argued that combining the insights from relational autonomy with a person-centred approach would be more helpful when considering decision-making by and for people with dementia. The paper then uses discourse analysis to analyse judicial language in a key case about where a person with dementia should live. It is argued that possibilities for autonomy at the margins of capacity may be closed down through the discursive strategies used by the courts. The paper concludes that relational autonomy should be revised to include insights from person-centred care in order to empower decision making for people with dementia, and that judicial decision-makers should engage with the relationality of autonomy at the margins of capacity.
Subject terms:
mental capacity, mental health law, person-centred care, decision making, dementia;
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;
An e-document pack providing a range of materials and practice guidance to help those caring for people with restricted mental capacity. The pack will also help care providers to comply with the Care Quality Commissions Essential Standards of Quality and Safety. It covers the key principles of mental capacity; factors affecting mental capacity; stress, mental capacity and dementia; the impact...
An e-document pack providing a range of materials and practice guidance to help those caring for people with restricted mental capacity. The pack will also help care providers to comply with the Care Quality Commissions Essential Standards of Quality and Safety. It covers the key principles of mental capacity; factors affecting mental capacity; stress, mental capacity and dementia; the impact of changes in routine and environment; preserving independence; involving people with dementia; and independent advocacy services. It includes 19 printable documents, including forms, checklists and handouts.
Subject terms:
mental capacity, user participation, advocacy, assessment, dementia;
Journal of Dementia Care, 19(6), November 2011, pp.20-22.
Publisher:
Hawker
Because of the mind’s adaptability, intellectual impairment through dementia can lead to new growth pathways. This can provide an individual with new opportunities to reconnect with premature ways of apprehending reality, and this article suggests that arts may be an ideal outlet for those with dementia. People with dementia have an innate sense of creativity to seek out forms of self-expression...
Because of the mind’s adaptability, intellectual impairment through dementia can lead to new growth pathways. This can provide an individual with new opportunities to reconnect with premature ways of apprehending reality, and this article suggests that arts may be an ideal outlet for those with dementia. People with dementia have an innate sense of creativity to seek out forms of self-expression that do not rely on words. This article looks at how impairment of intellectual capacity in dementia can lead to the exploration of new growth pathways in the brain, prompting a re-evaluation of how a patient with dementia sees the world. The article describes sessions that the authors have used to unlock this creativity, using simple, uncluttered instructions shared at appropriate moments so as to not overwhelm or confuse attendants.
Subject terms:
mental capacity, older people, arts, art therapy, dementia;
This film follows three characters' interweaving stories as they cope with issues arising from learning disability, mental health and dementia. The DVD also features three stories dealing with issues concerned with Least Restrictive Practice. It can be used in staff training to discuss issues raised by the Mental Capacity Act.
This film follows three characters' interweaving stories as they cope with issues arising from learning disability, mental health and dementia. The DVD also features three stories dealing with issues concerned with Least Restrictive Practice. It can be used in staff training to discuss issues raised by the Mental Capacity Act.
Subject terms:
learning disabilities, mental capacity, severe mental health problems, decision making, dementia;