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Privileging place: reflections on involving people with dementia in a residency
- Author:
- BARTLETT Ruth
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 14(6), 2015, pp.788-799.
- Publisher:
- Sage
Although attention is paid to involving people with dementia as collaborators in research, the issue of place – where involvement actually occurs – has been neglected. This is significant because we know from the academic literature that places can adversely affect social relations and a person’s ability to participate as equal partners. This paper privileges place and documents the author's experiences of running residencies in the English Lake District with people with dementia. In doing so the authors provide a model to reference for involving people with dementia in research and knowledge production, while simultaneously strengthening the evidence base for the residency as a method for participatory research. People with dementia participated in two residencies to co-produce a touring exhibition and educational resource as part of a research dissemination project. It was found that by privileging place a more equitable, productive, healthier, and respectful way of involving people with dementia as collaborators in research dissemination could be realised. The project has wider implications for the involvement of people with dementia in not only research, but also public consultations, service evaluations, and policy-related work. (Edited publisher abstract)
Citizenship in action: the lived experiences of citizens with dementia who campaign for social change
- Author:
- BARTLETT Ruth
- Journal article citation:
- Disability and Society, 29(8), 2014, pp.1291-1304.
- Publisher:
- Taylor and Francis
This article examines the experiences of citizens with dementia who campaign for social change, with a particular focus on the effects of campaigning on citizenry identity and psycho-emotional well-being. In diary-interviews, 16 people with dementia recorded and described their experiences of campaigning. Findings revealed that although campaigning can be energising and reaffirming of citizen identity, because it (re)located a person within the realm of work, individuals may experience dementia-related fatigue and oppression linked to normative expectations about what someone with dementia ‘should’ be like. The discussion is linked to critical debates within disability studies about the psycho-emotional aspects of impairment and disability, and concludes that the struggle for citizenship has only just begun for people with dementia. (Edited publisher abstract)
The emergent modes of dementia activism
- Author:
- BARTLETT Ruth
- Journal article citation:
- Ageing and Society, 34(4), 2014, pp.623-644.
- Publisher:
- Cambridge University Press
After decades of silencing and discrimination, people with dementia are beginning to join forces, take action and campaign for social change. Drawing on data obtained from ‘activists’ with dementia using diary interview method and participant observation, this paper considers the emergent modes of dementia activism in the context of the social movement literature, and in particular, work emphasising the role of networks in health social movements. The study identified three emergent modes of dementia activism; these were the ‘protecting-self against decline’ mode, ‘(re) gaining respect’ mode, and ‘creating connections with other people with dementia’ mode. Taken together, these modes show how a sense of elapsing time pervades this form of activism. The investigation reinforces the contention that time is a dominated force that structures human motivation and goals. Furthermore, it raises the possibility that activism can protect against decline amongst people with dementia given the appropriate temporal space. (Edited publisher abstract)
'You can get in alright but you cant get out'. Social exclusion and men with dementia in nursing homes: insights from a single case study
- Author:
- BARTLETT Ruth
- Journal article citation:
- Quality in Ageing, 8(2), June 2007, pp.16-26.
- Publisher:
- Pier Professional
- Place of publication:
- Brighton
Older men with dementia in nursing homes are at considerable risk of social exclusion due to factors associated with age, gender, mental health status and this setting. Drawing on a detailed case study from a male participant involved in a larger study on social exclusion, this article highlights and explores masculine experiences of, and responses to, nursing home life. In this single case study it was found that social exclusion was experienced in an economic, spatial and emotional sense, and the participant aligned himself with other men in the home and masculine behaviours. Implications for care home practice and research are discussed. The article also concludes that more attention needs to be paid to the influence of gender and, in particular, to the different needs and experiences of older men with dementia in receipt of care generally.
Dementia as a disability: can we learn from disability studies and theory?
- Author:
- BARTLETT Ruth
- Journal article citation:
- Journal of Dementia Care, 8(5), September 2000, pp.33-36.
- Publisher:
- Hawker
Reviews literature in the field of disability studies, outlining how certain ideas and approaches to concepts such as empowerment and independence can contribute to the understanding of the range of social barriers faced by people with dementia.
Using walking interviews to enhance research relations with people with dementia: methodological insights from an empirical study conducted in England
- Authors:
- BRANNELLY Tula, BARTLETT Ruth
- Journal article citation:
- Ethics and Social Welfare, 14(4), 2020, pp.432-442.
- Publisher:
- Taylor and Francis
- Place of publication:
- Abingdon
Ethical research practice requires inclusionary approaches that enable people to contribute as fully as possible. Not enough is yet known about the impacts of dementia on daily life, however, people with dementia may find inclusion in research challenging, as the ‘cognitive load’ required may be overwhelming. When responding is difficult, others may contribute and the voice of people with dementia may be diminished. In this paper, the method of walking interviews is reflected on following a study that examined the acceptability and usefulness of Global Positions Systems (GPS). Attention is drawn to an observation of the contributions people with dementia made whilst out walking with the researchers. When out walking, people with dementia used the environment as sensory prompts to start conversations, and these discussions shaped research data, and enabled people with dementia to raise concerns about the impacts of dementia, their futures and what they feared for themselves and their families. The challenges that people with dementia faced in negotiating everyday practices were visible. The person with dementia showed the researcher around their neighbourhood, and this significantly changed the interview dynamic and positioned people with dementia as leading the interaction. (Edited publisher abstract)
Life at home for people with a dementia
- Authors:
- BARTLETT Ruth, BRANNELLY Tula
- Publisher:
- Routledge
- Publication year:
- 2018
- Pagination:
- 42
- Place of publication:
- Abingdon
This book provides an evidence-based account of improving life at home for people with a dementia and their families. There are estimated to be 47 million people with a dementia worldwide, the majority of whom will live, or want to live, in their own home. Yet there is limited knowledge on what life is like for people with a dementia living at home. Most research focuses on care in hospitals or care homes, and takes a medical perspective. This book bridges this gap in knowledge by providing a comprehensive and critical overview of the best available evidence on enabling people with a dementia to live well at home from the viewpoint of those living with the condition, and in the context of global policy drivers on ageing and health, as well as technological advances. The book includes chapters on citizenships – that is, the diversity of people living with a dementia – enabling life at home, rethinking self-management, the ethics and care of people with a dementia at home, technological care and citizenship, and sharing responsibilities. It concludes with a care manifesto in which we set out a vision for improving life at home for people with a dementia that covers the areas of professional practice, education and care research. (Edited publisher abstract)
‘I shouldn’t be living there because I am a sponger’: negotiating everyday geographies by people with learning disabilities
- Authors:
- POWER Andrew, BARTLETT Ruth
- Journal article citation:
- Disability and Society, 33(4), 2018, pp.562-578.
- Publisher:
- Taylor and Francis
Learning disability policy has for some time been framed by the goal of inclusion which purports to enable people with learning disabilities to lead a ‘life like any other’ person. This article examines the extent to which this is the case in England, by tracing the lived experiences of people with learning disabilities within their communities. The article draws on two interlinked qualitative studies involving interviews that examined their local place-based experiences of inclusion and exclusion. The findings reveal ‘moments of inclusion’ and opportunities for social encounter from peer support, but these were situated amidst wider experiences of exclusion and harassment. (Edited publisher abstract)
Gender, citizenship and dementia care: a scoping review of studies to inform policy and future research
- Authors:
- BARTLETT Ruth, et al
- Journal article citation:
- Health and Social Care in the Community, 26(1), 2018, pp.14-26.
- Publisher:
- Wiley
Gender 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. (Publisher abstract)
Ageing with a learning disability: self-building peer support to combat loneliness and social isolation
- Authors:
- POWER Andrew, BARTLETT Ruth
- Journal article citation:
- Generations Review, 26(2), 2016, pp.23-27.
- Publisher:
- British Society of Gerontology
This article summarises findings from a small scale study to look at whether peer-advocacy support can help reduce loneliness and social isolation in adults who are ageing with learning disabilities. The context for the study was an increase in the numbers of people with learning disabilities who are more vulnerable to social isolation due to reductions in the provision of day services, both due to cuts in funding and the personalisation agenda. The study was co-designed with two self-advocates with learning disabilities and two professional advocates. A total of 12 interviews with participants in two age groups: 40-55 and 55+ were conducted. The study identified a small range of local peer-support groups around the urban region where the study took place which enabled people to meet other self-advocates who they felt comfortable with. As well as relieving feelings of loneliness and isolation; the groups offered participants the opportunity to learn new skill and participate in the community. (Edited publisher abstract)