Not Wanting to Lose the Dignity of Risk: On Living Alone with Dementia.

Of the more than 47 million people living with Alzheimer's disease or other types of dementia, an estimated one-third live alone. This essay explores the idea of the dignity of risk as it presents in the lives of people living alone with dementia, an underrepresented group in research, and considers the tension between safeguarding people with dementia from risks associated with disease progression and denying them the experience of risk as an aspect of everyday life. For individuals, risk is associated with vulnerability, choice, uncertainty, and the pursuit of goals, and may hold positive and negative connotations. This essay considers how myriad choices in the everyday lives of people living alone with dementia present some degree of risk, and how the ability to make these choices may constitute a life of dignity, replete with meaning and richness. The essay concludes with suggestions about how to reframe living alone with dementia as a way of living that can be better socially supported.

Inclusion of people living with Alzheimer's disease or related dementias who lack a study partner in social research: Ethical considerations from a qualitative evidence synthesis.

BACKGROUND: Because use of a study partner (proxy decision-maker) to give informed consent on behalf of someone living with Alzheimer's disease or related dementias (ADRD) is common in nearly all clinical research, people living with ADRD who lack a study partner are regularly excluded from participation. Social research presents different opportunities and risks than clinical research. We argue that guidelines developed for the latter may be unduly restrictive for social research and, further, that the automatic exclusion of people living with ADRD presents separate ethical challenges by failing to support extant decision-making capacity and by contributing to underrepresentation in research. PURPOSE: The study objective was to identify key components related to including cognitively vulnerable participants who lack a study partner in social research. RESEARCH DESIGN/STUDY SAMPLE: We conducted an adaptive qualitative evidence synthesis (QES) and subsequent content analysis on 49 articles addressing capacity and research consent for potentially cognitively compromised individuals, to include people living with ADRD, who lack a study partner. RESULTS: We identified four major topic areas: defining competency, capacity, and consent; aspects of informed consent; strategies to assess comprehension of risks associated with social research; and risks versus benefits. CONCLUSIONS: Based on findings, we suggest new and ethically appropriate ways to determine capacity to consent to social research, make consent processes accessible to a population experiencing cognitive challenges, and consider the risks of excluding a growing population from research that could benefit millions.

Bioethics and Gerontology: The Value of Thinking Together.

The interdisciplinary field of bioethics focuses on what it means to be a person, flourish as a person, and be respected as a person in different conditions of health, illness, or disability. Bioethics and policy research considers normative questions such as how a good society, through its priorities and investments, should demonstrate its commitments to the lives of different populations. Bioethics and humanities scholarship, often known as "health humanities," shares affinities with age studies and disability studies and with narrative-based approaches to the study of human experience. Gerontology is concerned with the many aspects of life that affect how people age, including social structures and values that influence the experience of growing old. In this article, we briefly explore the evolution of bioethics, from a discourse that emerged in relation to developments in biomedicine, bioscience, and biotechnology; to research ethics; to broader ethical questions emerging from real-world conditions, with attention to how bioethics has considered the experience of aging. Until recently, most age-focused work in bioethics has concerned age-associated illness, particularly end-of-life decision making. Given the reality of population aging and the ethical concerns accompanying the shift in age for most places in the world, the further evolution of bioethics involves greater attention to the support of flourishing in late life and to social justice and health equity in aging societies. We argue that the discourses of bioethics and critical gerontology, in dialogue, can bring a new understanding of privilege and preference, disparity and disadvantage, and reflection and respect for aging individuals.

"How I Can Help Me": Self-Care Priorities and Structural Pressures Among Black Older Adults With Diabetes.

BACKGROUND AND OBJECTIVES: Disparities in type 2 diabetes mellitus (diabetes) represent an ongoing public health challenge. Black older adults are at high risk of diabetes and diabetes' complications. Diet, physical activity, and medication can control these risks, yet disease rates remain elevated. Utilizing an intersectionality framework, we seek to extend understanding of the social dimensions of diabetes through an examination of the diabetes self-care process from the perspective of Black older adults. RESEARCH DESIGN AND METHODS: This project involved a thematic analysis of diabetes illness narrative interviews with Black participants (N = 41) in our National Institute on Aging-funded study of diabetes. In a narrative approach, the participant communicates the significance of actions and events. RESULTS: The findings suggest that diabetes self-care involves interconnected struggles across four domains of care: (1) multimorbidity management, (2) financial well-being, (3) family support, and (4) formal health care. DISCUSSION AND IMPLICATIONS: Black older adult self-care reflects an active process of pursuing meaningful social goals and critical health needs. An intersectional framework, however, reveals the ongoing histories of inequity that shape this process. Further intervention to address the racist policies and practices found in Black older adults' communities and clinical care is needed to make true progress on diabetes disparities.

Ascribed Meaning of Disease Control: Perspectives of Patients With Type 2 Diabetes.

BACKGROUND: Contemporary treatment of type 2 diabetes mellitus (hereafter diabetes) heavily emphasizes "diabetes control," largely defined by measurable blood glucose parameters. Little is known about how people living with the condition themselves define diabetes control within the lived experience of their disease. METHODS: As part of a qualitative study investigating the subjective construction of diabetes, 83 in-depth interviews were conducted with African American and non-Hispanic white older adults. Using content analysis, 4237 pages of narrative data were analyzed to explore how informants conceptualized diabetes control. FINDINGS: Four themes emerged from the data, describing varied understandings of diabetes control: (a) blood sugar regulation, (b) practicable treatment adherence, (c) bodily experience, and (d) degree of pharmaceutical need. Findings demonstrate that among persons with diabetes, the term diabetes control is multifaceted. CONCLUSION: While clinical guidelines have established target blood glucose parameters as the standard indicator of diabetes control, persons with diabetes conveyed varied and diverse meanings situated within personal experiences. To foster empathetic and collaborative care, health-care providers tending to this population may consider integrating the emergent themes into communicative and treatment approaches.

Diabetes and the Motivated Patient: Understanding Perlocutionary Effect in Health Communication.

Health care providers (HCP) understand the importance of keeping patients motivated but may be unaware how their words may have unintended negative effects upon their patient's lives. People with diabetes report being told by their HCP that they are "cured" or that they are praised for strides made in weight loss and/or lowered blood glucose, and interpret these messages in unexpected ways. For this paper, we focus upon one case to illustrate the depth and nuance of the patient-provider communication as it emerged within a larger interview-based ethnographic study. Audio-recorded interviews and transcriptions were analyzed discursively. Discourse analysis reveals the ways ideology affects how the patient responds to HCP's utterances and how this affects diabetes self-care. Findings indicate significant perlocutionary effects upon health outcomes, varying both positively and/or negatively. This study points to the importance of carefully considering the power of words and whenever possible knowing the patient's ideological orientation to their world. HCPs should be explicit and deliberate with their communication. Sensitization to the various ways patients hear and react to messages in a clinical setting may lead to improved health outcomes, especially for those with chronic health conditions such as diabetes mellitus.

Successful Aging Among African American Older Adults With Type 2 Diabetes.

OBJECTIVES: Rowe and Kahn's concept of successful aging remains an important model of well-being; additional research is needed, however, to identify how economically and socially disadvantaged older adults experience well-being, including the role of life events. The findings presented here help address this gap by examining the subjective construction of well-being among urban African American adults (age ≥ 50) with Type 2 diabetes. METHOD: As part of the National Institute on Aging-funded Subjective Experience of Diabetes among Urban Older Adults study, ethnographers interviewed African American older adults with diabetes (n = 41) using an adaptation of the McGill Illness Narrative Interview. Data were coded using an inductively derived codebook. Codes related to aging, disease prognosis, and "worldview" were thematically analyzed to identify constructions of well-being. RESULTS: Participants evaluate their well-being through comparisons to the past and to the illnesses of friends and family. Diabetes self-care motivates social engagement and care of others. At times, distrust of medical institutions means well-being also is established through nonadherence to suggested biomedical treatment. DISCUSSION: Hardship and illness in participants' lives frame their diabetes experience and notions of well-being. Providers need to be aware of the social, economic, and political lenses shaping diabetes self-management and subjective well-being.

Extending the Framework of Generativity Theory Through Research: A Qualitative Study.

PURPOSE OF THE STUDY: Based on ethnographic interviews, we discuss three ideas we believe will expand knowledge of older informants' thoughts about and representations of generativity. We adapt the notion of "dividuality" as developed in cultural anthropology to reframe ideas on generativity. The term dividuality refers to a condition of interpersonal or intergenerational connectedness, as distinct from individuality. We also extend previous definitions of generativity by identifying both objects of generative action and temporal and relational frameworks for generative action. DESIGN: We define 4 foci of generativity (people, groups, things, and activities) and 4 spheres of generativity (historical, familial, individual, and relational) based in American culture and with which older informants could easily identify. The approach outlined here also discusses a form of generativity oriented to the past in which relationships with persons in senior generations form a kind of generative action since they are involved in caring for the origins of the self and hence of future generative acts. These 3 elements of a new framework will allow researchers to pose critical questions about generativity among older adults. Such questions include (a) How is the self, as culturally constituted, involved in generative action? and (b) What are the types of generativity within the context of American culture and how are they spoken about? Each of the above points is directly addressed in the data we present below. METHODS: We defined these domains through extended ethnographic interviews with 200 older women. RESULTS AND IMPLICATIONS: The article addresses some new ways of thinking about generativity as a construct, which may be useful in understanding the cultural personhood of older Americans.

Older Women Discuss Planning for Future Care Needs: An Explanatory Framework.

OBJECTIVE: This study expands upon existing narrative data concerning health care preparation by developing a multi-theme framework of plans for future care needs. METHOD:: Inductive content analysis was conducted on 185 interviews with European American and African American older women. RESULTS:: An explanatory framework emerged of five themes, describing varied approaches to planning for future care needs: (a) Autonomous Care Planners, (b) Externally Reliant Planners, (c) Aware of Preference, (d) Wishful Thinkers, and (e) Avoidant. A distinct group included women performing only end-of-life planning. Barriers to planning included low-perceived vulnerability, financial constraints, being uninformed of needed actions, and fear of burdening. DISCUSSION:: Although the majority undertook active steps to prepare for future care needs, many missed key steps or achievement of planning goals recommended by experts. Findings may be applied to long-term care planning research by providing added, rich detail on how aging women construct their options, make choices, and address this important area for future well-being.