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2009, Journal of Aging Studies
This article appeared in a journal published by Elsevier. The attached copy is furnished to the author for internal non-commercial research and education use, including for instruction at the authors institution and sharing with colleagues. Other uses, including reproduction and distribution, or selling or licensing copies, or posting to personal, institutional or third party websites are prohibited. In most cases authors are permitted to post their version of the article (e.g. in Word or Tex form) to their personal website or institutional repository. Authors requiring further information regarding Elsevier's archiving and manuscript policies are encouraged to visit: http://www.elsevier.com/copyright
Journal for Cultural Research, 2001
Innovation in Aging, 2018
There is considerable evidence that the combined impact of having a dementia and the negative response to diagnosis and symptoms significantly undermines psychosocial well-being and quality of life. There is growing evidence that stigma emphasizes and deepens this distress, yet we still know very little about the stigma experienced by persons with dementia (PwD) and their care partners. In this symposium, participants will learn about the types of stigma and how the experience of stigma interferes with attaining appropriate services, lowers quality of life, is associated with many mental health issues in PwD, and may be affected by novel advances in early diagnosis. In addition, coping styles and years of education may influence the experience of stigma by care partners. Attendees will learn that stigma is pervasive worldwide and may be more severe in some ethnic groups.
Journal of Aging Studies, 2009
Rhetoric referring to Alzheimer's disease as 'the never ending funeral' or 'a slow unraveling of the self' implies that diagnosed individuals and their families alike are victims of a dreaded disease. Data gathered from web-based surveys with twenty-seven individuals with dementia demonstrate how some persons living with the condition actively negotiate their everyday lives to counter such pejorative assumptions. Grounded theory methods were used to consolidate textual data into overarching themes. Findings depict persons with dementia who do not experience an inherent 'loss of self' but rather consciously strive to incorporate a 'manageable disability' into their existing identities. Respondents give numerous examples of how they can and do live with dementia. These data portray an empowered identity that suggests the need for a reframing of dementia to challenge the normative victim-orientation and the social disadvantages of such biomedical reductionism.
2020
It seems obvious that one of the harms that dementia does is to undermine the person’s identity. One reason for thinking this is that personal identity has long been associated with continuity of a subjective perspective on the world held together by memory that that memory is severely curtailed in dementia. Hence dementia seems to threaten an individual’s identity as a particular person, gradually undermining it. But the necessity of the connection has been criticised by a number of philosophers and healthcare professionals who subscribe to a narrative account of personal identity. If personal identity is constituted through a personal narrative rather than, for example, a memory connection, then while the capacity to author a self-narrative also seems to be threatened by dementia, that need not undermine personal identity providing that the narrative that constitutes identity can be co-constructed. In this paper I set out the danger of any such view, explore its motivations and pr...
Culture Medicine and Psychiatry, 1999
This paper is a qualitative study based on retrospective, unstructured, qualitative interviews with Mrs. Jones and other African-American, Chinese-American, Irish-American and Latino family caregivers in the Boston area. A narrative approach is used to show how family caregivers draw on their cultural and personal resources to create stories about the nature and meaning of illness and to ask how ethnic identity may influence the kinds of stories family caregivers tell. Three different story types are identified and described, each with a distinctive configuration of illness meanings and overarching theme, or storyline: a subset of African-American, Irish-American, and Chinese-American caregivers told us stories about Alzheimer's as a disease that erodes the core identity of a loved one and deteriorates their minds; a subset of Chinese caregivers narrated stories that emphasized how families managed confusion and disabilities, changes ultimately construed as an expected part of growing old; a subset of Puerto Rican and Dominican families, while using the biomedical label of Alzheimer's disease or dementia, placed the elder's illness in stories about tragic losses, loneliness, and family responsibility. To construct their stories, caregivers drew upon both biomedical explanations and other cultural meanings of behavioral and cognitive changes in old age. Their stories challenge us to move beyond the sharp contrast between ethnic minority and non-ethnic minority views of dementia-related changes, to local clinics and hospitals as sites where biomedical knowledge is interpreted, communicated, discussed, and adapted to the perspectives and lived realities of families.
Popularizing Dementia
Dementia, 2017
The aim of this paper is to argue for the utility of a relational model of disability, as a way of conceptualizing dementia. We explore whether dementia should be considered as a disability, and whether people with dementia might consider themselves as disabled people. We review examples of, and issues raised by, the political activism of people with dementia. We consider how language constructs dementia negatively. We discuss how the environment influences the experience of dementia. In conclusion, we show that a relational model of dementia lays the basis for a human rights approach to the condition, based on collaborative partnerships between people with dementia and people from other disability communities. Keywords Human rights, models of disability, environmental barriers, activism the social barriers faced by people with illnesses and impairments. However, this classic social model approach does not fully account for the complexity of the disability experience (Shakespeare 2006), and so we will argue that it cannot do the required job in terms of dementia. Our suggestion in this paper is that a more innovative approach to dementia is required. This approach must give appropriate weight both to the condition itself, and to the social relations within which people with the condition, and their families, live. Dementia, like disability in general, is a multi-dimensional phenomenon, and requires a response that addresses different aspects, including clinical, psychological, social, and political. We suggest that regarding dementia as a disability could be beneficial for people living with dementia. As noted by Angus and Bowen-Osborne (2014): "Disability and illness narratives can provide us with the opportunity to circumvent a reliance on a description of the physical impairment and expose attitudes and practices imposed upon a person…" We are also interested in whether categorizing dementia as a disability may help us to explore some of the ways that barriers and discourses shape experiences of the condition. Perhaps most importantly, we hypothesize that seeing dementia as a disability could place people with dementia, as self-advocates, at the centre of their own stories, and help provide an enabling identity. Dementia as disability We need to start by asking whether or not dementia is a disability (or impairment, to use social model language, see Oliver 1990). This is different from the question of whether people with dementia consider themselves disabled. The first question can be answered more or less objectively, the second question is subjective, depending on the attitudes, values and experiences of individual people with dementia themselves. The WHO International Classification of Functioning, Disability and Health defines disability as "an umbrella term for impairments, activity limitations and participation restrictions" (WHO, 2002, 2), referring to the negative aspects of the interaction between an individual with a health condition and that individual's contextual factors (environmental and
Sociology of health & illness, 2017
Within western cultures, portrayals of dementia as 'a living death' are being challenged by people living with the diagnosis. Yet dementia remains one of the most feared conditions. The sociological lens of citizenship provides a conceptual framework for reviewing the role of society and culture in repositioning dementia away from deficit to a discourse of agency and interdependence. Awareness of cognitive change, and engaging with the diagnostic process, moves people into a transitional, or 'liminal' state of uncertainty. They are no longer able to return to their previous status, but may resist the unwanted status of 'person with dementia'. Drawing on qualitative studies on social participation by people with dementia, we suggest that whether people are able to move beyond the liminal phase depends on acceptance of the diagnosis, social capital, personal and cultural beliefs, the responses of others and comorbidities. Some people publicly embrace a new iden...
AMA Journal of Ethics, 2017
Supporting people living with dementia in maintaining selfhood, relationships, and well-being requires seeing beyond the common negative focus on disability. Furthermore, prioritizing the person rather than the disease requires rejecting the tragedy discourse, which is the negative lens through which dementia is typically considered. In this paper, we highlight qualitative research on dementia involving people living with dementia as active participants. Recognizing that many people living with dementia remain capable of making decisions that affect their lives, we highlight a research-based approach to support known as "authentic partnerships" that includes people living with dementia as equal partners. We conclude by proposing eight beliefs to mobilize positive change in transcending the tragedy discourse of dementia, thereby opening a space for selfhood, relationships, and well-being.
Journal of Aging Studies, 2004
Although much research pertaining to Alzheimer's disease (AD) explores the impact on caregivers, there is a general paucity of data on experiences of living with the condition. Contemporary medical initiatives to diagnose people earlier in the illness trajectory make it increasingly possible to hear the voice of people with memory loss, which can improve both public perception and policy. This study examined the impact of being diagnosed with early AD on identity construction. Respondents highlighted aspects of being diagnosed that were instrumental in making sense of changes in their lives and identities, including defining moments, to tell or not to tell, and preservation. Findings suggest that understanding how to identify memory deficits, the context of diagnosis, and the techniques employed for managing illness are crucial to subjective experiences. Despite normative expectations and the rhetoric of loss, respondents deliberately manage their interactions to make sense of their lives and preserve themselves. D 2004 Elsevier Inc. All rights reserved.
Healthcare
Medical sciences in their classic approach focus on objectively measured dimensions of human functioning and its disorders. Therefore, they are often far removed from the unique identity, experiences and needs of older people. The solution to this type of focusing on the biological, psychological or social dimension of the life of older people may be the inclusion of the narrative in the daily practice of medical care. Narrative medicine supports the development of a holistic approach to care that allows older people to present their own life story, which helps to recognize their uniqueness and to show a genuine interest in the narrative. Attention is increasingly drawn to the fact that the narrative of older people should be recognized and taken into account when planning and providing care in institutions, including long-term care facilities (LTCFs). Despite the fact that LTCFs are often attended by people with multiple diseases and with cognitive impairment, the recognition, resp...
Understanding dementia and its entanglement with everyday life presents a conceptual and methodological challenge to a range of disciplines in the humanities, health and natural sciences. In this day of academic seminars, we explored some of the work being conducted in humanities and health research to examine this topic, focusing on the creative approaches that are being developed to tackle questions of selfhood, relationality, materiality and narrative. The event was co-hosted by the Morgan Centre for the Study of Everyday Life, the Dementia and Ageing Research Team and MICRA, the Manchester Institute for Collaborative Research on Ageing.
Geriatrics
In this paper, we argue that the capacity for narrative agency is significantly compromised in individuals with dementia due to at least three factors: (a) Dementia itself, which causes increasing difficulties in constructing and articulating coherent and meaningful stories, and sharing them with others; (b) cultural narratives about dementia, which promote an extremely negative and pessimistic view of those with the disease; and (c) the convergence of these two last factors, which can lead to caregiving interactions that do not support storytelling and can even stop people with dementia from telling stories. We highlight the importance of narrative care, which involves interventions that focus on the person and their unique life narrative. In narrative care, people with dementia are treated not as impaired patients defined by the disease, but as human beings. In doing so, people with dementia can have their own voices back, which is silenced and discredited so many times.
As an interdisciplinary group of health and artist researchers, we are concerned about the ways in which many persons living with dementia in long-term care homes are invalidated and treated as dysfunctional, thereby promoting social exclusion, depriving them of their dignity, and threatening their quality of life. We are concerned about the ways in which persons with dementia are framed as lost, robbed of mind, doomed, gutted, and the living dead. As part of this, we are conscious of the ways the “tragedy discourse” (Mitchell et al., “Dementia”) is culturally produced through media and artistic representations and the ways it is manifested in care practices and policies in institutional settings, conceptualized as a kind of “social action.”1 This tragedy discourse is found in mass media, academic, and policy documents and in the reductive and dehumanizing nature of dementia care that is characterized by the management of “challenging behaviours” with mechanical and/or pharmacological restraint (Maust et al.; Dupuis et al., “Pathologizing”).
Aging & Mental Health, 2007
2018
This is a pre-print of an article published in Subjectivity (2018) 11: 128-143. This paper probes the possibilities and limits of the concepts of " narrative identity, " and " counter-narrative " in dementia life writing. Considering first the problematic status of autopathographies by people with dementia as counter-narratives, it then moves on to explore collaborative life stories co-produced with persons suffering from dementia. Focusing on the collection Tell Mrs Mill Her Husband Is Still Dead (Clegg, 2010), it draws on ideas from conversational storytelling and small story research to reconsider how identity claims and counter-narratives are made in collaborative dementia life writing. Despite the fact that life stories by people with dementia may be considered " broken narratives, " the present analysis highlights how people with dementia continue to use these fragmentary narratives to make identity claims, to critique their care environment, and to make sense of their often confusing world.
Scholars and activists within the fields of disability and age studies have fought hard to have disabled individuals of all ages recognized as people with disabilities, rather than a class of the disabled or the old. These two broad categories are peopled with individuals with life experiences and opinions, not just needs demanding attention. To better understand the experience of disability, scholars and activists call for the voices of the disabled, for their stories to be told and heard. But such a call also presents us with several challenges. How can the voices of the disabled be heard-particularly the voices of people with cognitive impairments or severe physical impairments? In what forms can and do their voices have meaning? Might certain forms of narrative and modes of performance actually support ideals of independence and selfhood that fuel fears of disability in the first place? What can the stories of the disabled tell us about the very meaning of the "self"? 1 I want to address these questions by following Time Slips, a creative storytelling project with people with Alzheimer's disease and related dementia (ADRD) 2 that began in 1998 in both Milwaukee, Wisconsin, and New York City. As director of the project, I organized 18 weeks of storytelling workshops in Milwaukee and 9 weeks in New York City. In the second phase of the project, we translated a handful of the nearly 100 stories into a professional play production, a Website, and an art installation in order to deepen public awareness of the creative potential and humanity of people with dementia.
BC Studies: The British Columbian Quarterly, 2019
Sociology of Health & Illness, 2017
Objective: the aim of the current research is to capture significant areas of concern in dementia caregiving both in the community and in old-age psychiatric wards. As a reflection, the sought goal is to improve patients with dementia (PWD) personhood. Study Design: a qualitative research approach with narrative analysis provided significant themes of concerns in the dementia caregiving. The theoretical approach is person-centred. Material and Methods: focus groups of dementia caregivers offered the narratives for analysis. A series of probing questions were used to stimulate the discussions and the retrieval of narratives. A total of 34 caregivers participated in the study. Their professions included inpatient and community nurses, dementia doctors, social workers, community workers, clinical psychologists, support workers, and family members Results: major themes of concern emerging were the logistic and geographical isolation of caregivers from other centres and professionals, lack of collaboration and support, absence of information sharing, shortage of staff and time resources, deficiency of support to deal with grief and burnout, shortage of specialist consultation when needed. All these aspects were felt as impacting on PWD personhood. Conclusions: narratives emerged as a viable research instrument to record the impact of dementia caregiving on PWD personhood. Besides, by allowing caregivers in having their voice heard the research aligns with the current trends in patient-centred care which also aims to care for the carer.
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