Listening to Alzheimer's

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.

Californian Journal of Health Promotion

Purpose: To examine ethnic differences in ratings of 1) condition severity, 2) need for medical assistance, and 3) likelihood of hiring a Healthcare Advocate (HCA) for an ill, elderly parent as a function of 1) parent’s cognitive state (Alzheimer’s disease [AD] or cognitively healthy), 2) parent’s physical malady (hip fracture or heart attack), and 3) distance (near or far from the parent), with an emphasis on the interaction between ethnicity and cognitive state. Method: Nine-hundred-seventy-four individuals who identified as White, Black, Hispanic, or Asian/Pacific Islander read a hypothetical vignette about an older man. The man’s physical malady (heart attack or hip fracture), cognitive state (AD or no AD), and physical distance from a close family member were manipulated in the vignette. Participants rated the severity of the medical condition and their likelihood of hiring an HCA. Results: Black and Asian/Pacific Islander participants did not differ from White participants on ...

The American Journal of Medicine, 1998

Families caring for a person with Alzheimer's disease (AD) soon discover that it is unlike any other illness. Coping with a degenerative brain disease is much different than dealing with a physical disability. AD is more disruptive to, and has greater impact on, the family than other chronic diseases. AD caregiving carries with it a high financial, social, and emotional price. Families must work toward effectively coping with the disease, decreasing the harmful effects on the family, and keeping family conflicts to a minimum. Support groups can provide families with much-needed information on the disease, emotional and practical support, and an expressive or advocacy outlet. Formal services can help relieve some of the burden of caring for an AD patient. Family members must remember that there is no "right" way to care for a person with AD, and each family must determine, with the help of the appropriate professionals and services, how to best meet its own needs. Given the burdens of care, however, even small interventions may translate into improvements in the quality of life or confidence of the caregiver. Am J Med. 1998;104(4A):

Journal for Cultural Research, 2001

Understanding dementia is a pressing social challenge. This article draws on the ‘Dementia talking: care conversation and communication’ project which aims to understand how talk about, and to people living with dementia is constructed. In this article I draw on the construction of dementia manifest in two data sets – a corpus of 350 recent UK national newspaper articles and qualitative data derived from in-depth interviews with informal carers. These data were analysed using a thematic discursive approach. A ‘panic-blame’ framework was evident in much of the print media coverage. Dementia was represented in catastrophic terms as a ‘tsunami’ and ‘worse than death’, juxtaposed with coverage of individualistic behavioural change and lifestyle recommendations to ‘stave off’ the condition. Contrary to this media discourse, in carers' talk there was scant use of hyperbolic metaphor or reference to individual responsibility for dementia, and any corresponding blame and accountability. I argue that the presence of individualistic dementia ‘preventative’ behaviour in media discourse is problematic, especially in comparison to other more ‘controllable’ and treatable chronic conditions. Engagement with, and critique of, the nascent panic-blame cultural context may be fruitful in enhancing positive social change for people diagnosed with dementia and their carers.

The number of young people who have a parent with dementia is rising as a result of improvements in diagnosis of young onset variants and demographic shifts. There has, however, been very little research focusing on this group. Accounts elicited as part of the Perceptions and Experiences of Young People With a Parent With Dementia described the period, usually some years, leading up to a diagnosis of a dementia and then the progress of the condition post diagnosis. These narratives were characterized by confusion, uncertainty, trauma, and distress as the young people struggled to make sense of the significant and often extreme, behavioral and attitudinal changes that were symptoms of the illness. This article describes and discusses how the young people experienced and navigated the temporal messi-ness and consequent biographical disruption arising from parental dementia.

Social Science & Medicine, 2012

This paper builds on our prior work concerning the emergence of Alzheimer's disease (AD) as a major social and health concern. Our study was conducted in two phases (1985e1987 and 2009e2011). We examined the historical evolution of the concept of AD and the emergence of the AD social movement in the U. S. Sources include interviews with movement leaders and scientists, historical documents of the Alzheimer's Association, Congressional records, and published literature. We identified recurrent themes and salient issues motivating those in the movement, its barriers and facilitators, and the roles of government and NGOs in the creation of an organizational structure to maintain it. The characterization of AD as a leading cause of death among the elderly was crucial to sustaining the movement, but also operated as a "double edged sword". By construing "senility" as a treatable, even curable biomedical entity, the movement substantively contributed to the notion of an impending "crisis" of the aging population to be avoided at all costs, compounding the effect of conservative federal policies that emphasized the treatment or cure of AD, and less so the long-term care service needs of sufferers and caregivers that had given rise to the movement. We also discuss how the continuing hegemony of the medical model establishes a race against the demographic clock, pitting advances in biomedical research against the needs of an aging population. We propose that alternative framings and sources of legitimization are critical to address the needs and preserve the humanity of people living with AD and their caregivers.

Revista da Escola de Enfermagem da USP, 2016

OBJECTIVE To understand the content of Social Representation (SR) of family caregivers of Alzheimer's disease patients. METHOD Interviews were conducted with 26 caregivers and analyzed by the ALCESTE software. RESULTS The SR content was structured in two thematic axes called Daily Life and Care and Medical and Emotional Concepts and Outcomes. The first axis creates images related to the routine of interaction with the sick person, and contains a description of care procedures, experiences, and practices applied every day. The second is composed of subjective and conceptual aspects that make up the social representation of Alzheimer's disease, with meanings related to the emotional, medical, and biological contexts. CONCLUSION Due to the importance of topics related to patients' dependence and the personal and emotional consequences of the disease, overload is the main content of the SR of Alzheimer's disease for caregivers, and the understanding of these SR by health...

BJPsych Advances

SUMMARY There is a widening gap between the medical model of dementia and critical sociological perspectives of the condition. Given the relative failure of reductionism in dementia and its rising prevalence, consideration of the utility of these critical viewpoints is warranted. This article considers how these ideas, which challenge some prevailing assumptions about dementia, can be meaningfully applied in conjunction, rather than in competition, with conventional clinical ideas. To illustrate this, current perspectives on selfhood, biopolitics, citizenship and post-humanism are discussed. This article may also help to articulate sociologically oriented approaches already used by some clinicians and legitimise the time and attention needed to explore and deliver these. We support the view that dementia is an episteme in the making and that different traditions and dispositions can fruitfully collide to enliven interdisciplinary conversations about dementia and dementia care.

Bioethics, 2018

In the hope of future treatments to prevent or slow down the disease, there is a strong movement towards an ever-earlier detection of Alzheimer's disease (AD). In conjunction with scientific developments, this has prompted a reconceptualization of AD, as a slowly progressive pathological process with a long asymptomatic phase. New concepts such as 'preclinical' and 'prodromal' AD have been introduced, raising a number of conceptual and ethical questions. We evaluate whether these new concepts are theoretically defensible, in light of theories of health and disease, and whether they should be understood as disease or as an at-risk state. We introduce a pragmatic view on disease concepts and argue that an evaluation of the reconceptualization of AD should also take its aims and effects into account, and assess their ethical acceptability. The reconceptualization of AD is useful to coordinate research into preventive strategies, and may potentially benefit future patients. However, in the short term, early detection and labelling of 'preclinical AD' can potentially harm people. Since there is no treatment available and the predictive value is unclear, it may only create a group of 'patients-in-waiting' who may suffer from anxiety, uncertainty and stigmatization, but will never actually develop dementia. We conclude that only if the promise of preventive medication materializes, will the reconceptualization of AD turn out unequivocally to be for the better. Otherwise, the reconceptualization may do more harm than good.

Sociology of health & illness, 2013

Understanding dementia is a pressing social challenge. This article draws on the 'Dementia talking: care conversation and communication' project which aims to understand how talk about, and to people living with dementia is constructed. In this article I draw on the construction of dementia manifest in two data sets - a corpus of 350 recent UK national newspaper articles and qualitative data derived from in-depth interviews with informal carers. These data were analysed using a thematic discursive approach. A 'panic-blame' framework was evident in much of the print media coverage. Dementia was represented in catastrophic terms as a 'tsunami' and 'worse than death', juxtaposed with coverage of individualistic behavioural change and lifestyle recommendations to 'stave off' the condition. Contrary to this media discourse, in carers' talk there was scant use of hyperbolic metaphor or reference to individual responsibility for dementia, and any...

International Journal of Alzheimer's Disease, 2012

The objective of this paper is to understand how the public's beliefs in five countries may change as more families have direct experience with Alzheimer's disease. The data are derived from a questionnaire survey conducted by telephone (landline and cell) with 2678 randomly selected adults in France, Germany, Poland, Spain, and the United States. The paper analyzes the beliefs and anticipated behavior of those in each country who report having had a family member with Alzheimer's disease versus those who do not. In one or more countries, differences were found between the two groups in their concern about getting Alzheimer's disease, knowledge that the disease is fatal, awareness of certain symptoms, and support for increased public spending. The results suggest that as more people have experience with a family member who has Alzheimer's disease, the public will generally become more concerned about Alzheimer's disease and more likely to recognize that Alzheimer's disease is a fatal disease. The findings suggest that other beliefs may only be affected if there are future major educational campaigns about the disease. The publics in individual countries, with differing cultures and health systems, are likely to respond in different ways as more families have experience with Alzheimer's disease.

Journal of Aging Studies, 2009

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