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Narrative Interest Standard: a novel approach to surrogate decision-making for people with dementia
- Author:
- WILKINS James M.
- Journal article citation:
- Gerontologist, 58(6), 2018, p.1016–1020.
- Publisher:
- Oxford University Press
Dementia is a common neurodegenerative process that can significantly impair decision-making capacity as the disease progresses. When a person is found to lack capacity to make a decision, a surrogate decision-maker is generally sought to aid in decision-making. Typical bases for surrogate decision-making include the substituted judgment standard and the best interest standard. Given the heterogeneous and progressive course of dementia, however, these standards for surrogate decision-making are often insufficient in providing guidance for the decision-making for a person with dementia, escalating the likelihood of conflict in these decisions. In this article, the narrative interest standard is presented as a novel and more appropriate approach to surrogate decision-making for people with dementia. Through case presentation and ethical analysis, the standard mechanisms for surrogate decision-making for people with dementia are reviewed and critiqued. The narrative interest standard is then introduced and discussed as a dementia-specific model for surrogate decision-making. Through incorporation of elements of a best interest standard in focusing on the current benefit–burden ratio and elements of narrative to provide context, history, and flexibility for values and preferences that may change over time, the narrative interest standard allows for elaboration of an enriched context for surrogate decision-making for people with dementia. More importantly, however, a narrative approach encourages the direct contribution from people with dementia in authoring the story of what matters to them in their lives. (Publisher abstract)
Ethical considerations when involving older people in public service
- Authors:
- SCOURFIELD Peter, BURCH Sarah
- Journal article citation:
- Ethics and Social Welfare, 4(3), November 2010, pp.236-253.
- Publisher:
- Taylor and Francis
- Place of publication:
- Abingdon
Relatively little research has been carried out into the real impact (emotional or otherwise) of involving citizens in decision making about public services. This article reports on the findings of a small-scale qualitative study involving older people who had been part of a consultation in response to the need to close a city drop-in centre in England. Five members of the original consultation group were interviewed. The authors discovered that when the outcomes of consultation are undesired and when the precise role of those involved is left unclear in terms of purpose, responsibility and accountability, people can be left with powerful, often uncomfortable, feelings. The ethical issues around of involving people without adequate, prior preparation or ongoing support are discussed and suggestions made as to how public organisations can take an ethically sound approach to participation.
Researching older people with dementia in supported housing
- Author:
- EVANS Simon
- Journal article citation:
- Generations Review, 15(4), October 2005, pp.3-7.
- Publisher:
- British Society of Gerontology
This article explores the benefits of directly including the voices of people with dementia in research and identifies a range of strategies for overcoming the methodological challenges of a more inclusive approach. Examples from a study that aimed to explore the characteristics and suitability of extra care housing from a user perspective illustrate ethical dilemmas and practice challenges, including the role of gatekeeper, gaining informed consent and meeting the specific needs of people with dementia as research participants.
A tapestry of voices: using elder focus groups to guide applied research practice
- Author:
- STEWART Sally
- Journal article citation:
- Journal of Gerontological Social Work, 42(1), 2003, pp.77-87.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
One of the more subtle consequences of ageism is the exclusion of older adults from participating in the production of knowledge about issues that concern them. This qualitative study used 15 focus groups as a forum to elicit data about what elders themselves see as relevant and important areas for applied research. In addition to significant data that will be used to guide research initiatives at the Sheridan Elder Research Centre, the value that emerged in the process proved to be the validation of self-determination by elders, a principle fundamental to the Social Work Code of Ethics. This study demonstrates that, if given the opportunity to participate in decision-making about the scope and nature of applied research, older adults will contribute a wealth of rich data. (Copies of this article are available from: Haworth Document Delivery Centre, Haworth Press Inc., 10 Alice Street, Binghamton, NY 13904-1580).
Working with older women in research: some methods-based issues
- Authors:
- WARREN Lorna, et al
- Journal article citation:
- Quality in Ageing, 4(4), December 2003, pp.18-23.
- Publisher:
- Pier Professional
- Place of publication:
- Brighton
This article critical reflects on the experiences of working with older women from a range of communities in research. The focus is on the practicalities of setting up and carrying out the research, though implications for the process of policy-making are also briefly highlighted. The 'Older women's lives and voices' project, funded by the ESRC Growing Older (GO) Programme, aimed to find out more about the experiences of women aged 50 and over from a range of ethnic groups, focusing on the services that they use and would like to use.
EFORTT: ethical frameworks for telecare technologies for older people at home: final research report
- Author:
- LANCASTER UNIVERSITY
- Publisher:
- Lancaster University
- Publication year:
- 2012
- Pagination:
- 31p.
- Place of publication:
- Lancaster
EFORTT (Ethical Frameworks for Telecare technologies for older people at home) is an EU funded project which aimed to examine the ethical, social and gender implications of telecare interventions (remote care technologies worn, installed or embedded in homes) for older citizens in Spain, England, Norway and the Netherlands. The project involved the use of fieldwork (including documentary analysis, practice observations, and interviews with users, carers and practitioners) to gather information about preventive and responsive remote care practices, and recruitment of citizens' panels of older people and carers in each of the 4 partner countries as forums for views on telecare and future directions of care. Analysis of findings from the research was used to identify key themes and issues to inform discussion at the September 2010 Ageing with Technologies participative conference on care in Europe for practitioners, users, carers, policy makers and academics, the concluding session of which brought together proposals and priorities for future action on telecare which emerged from the discussions. This report describes the context and main findings of the research and its implications for policy and practice. The recommendations for ethical telecare development include providing care at home that is meaningful, sufficient and dignified, and ensuring engagement of older people in designing, developing and decision making about care.
Negotiating ethics in dementia care: an analysis of an ethic of care in practice
- Author:
- BRANNELLY Tula
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 5(2), May 2006, pp.197-212.
- Publisher:
- Sage
Providing care for people with dementia is often complex and ethically difficult, and is guided by the values of people with dementia and professional and lay carers. Each participant brings often different, and sometimes conflicting, perspectives, which contribute to the difficulty of negotiating suitable care. This research examined how participation and inclusion were facilitated by community psychiatric nurses and social workers to achieve care for people with dementia. Practice was observed to provide snapshots of interactions between people with dementia, practitioners and lay carers, and interviews with practitioners interrogated practice. The analytical framework used was Tronto's (1993) ‘integrity of care’, taken from the wider feminist political argument of an ethic of care (Gilligan, 1982). The adoption in practice of an ethic of care strengthens the opportunity for increased participation and inclusion and therefore aims to provide care that fits with the values and preferences of people with dementia and their carers. The research found that of 50 people with dementia, 10 were placed in permanent placements such as nursing homes and residential homes, some unwillingly. This article discusses what happens in care when the ethical elements of an ethic of care are practised, and when they are not.
Opinions regarding who should consent to research on behalf of an older adult suffering from dementia
- Authors:
- BRAVO Gina, PAQUET Mariane, DUBOIS Marie-France
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 2(1), February 2003, pp.49-65.
- Publisher:
- Sage
In many jurisdictions, consent to research on a decisionally incompetent adult can be provided only by the legal guardian. Yet, few cognitively impaired older adults are legally represented. This article reports on a postal survey eliciting the opinions of concerned individuals regarding who should decide whether an incompetent older adult will participate in research. Four groups of people were targeted by the survey: older adults, informal caregivers of cognitively impaired patients, researchers in ageing, and members of institutional review boards. Opinions were similar across the four groups and varied with the degree of risk involved in the study. In the absence of risk, most respondents did not think that the surrogate decision-maker must be legally appointed.
Researching ageing and later life: the practice of social gerontology
- Editors:
- JAMIESON Anne, VICTOR Christina
- Publisher:
- Open University Press
- Publication year:
- 2002
- Pagination:
- 275p.,bibliogs.
- Place of publication:
- Buckingham
Addresses the methodological challenges entailed in the study of the process of ageing and life course changes as well as the experience of being old. The book focuses on the theory and practice of doing research using a wide range of examples and case studies. Contents include: using existing sources; creating new data; the roles and responsibilities of the researcher.
Older people and participation within disabled facilities grant processes
- Author:
- AWANG Darren
- Journal article citation:
- British Journal of Occupational Therapy, 65(6), June 2002, pp.261-268.
- Publisher:
- Sage
This article presents a qualitative study examining the perceptions of older people using Disabled Facilities Grants to acquire home adaptations. The participatory processes of two local authorities and a Care and Repair agency. Data collection included semi-structured interviews with nine service users and seven key adaptation agency workers, in addition to the examination of agency documentation. The findings demonstrated that the publicity of grants was poor. Service users' experiences varied depending on the levels of support that were available. In addition to paper-based feedback methods, examples of organisational participative mechanism included a disability forum and a service user group. There was no specific mechanism adopted primarily for older people. Overall, the participatory levels were low, with emphasis on sensitising services to users' needs (agency controlled) rather than on moves towards greater democratic involvement (user controlled). Calls for further work to encourage older people participation in shaping and controlling service delivery thereby improving the quality of practice in this area.