Vulnerability and narrative in later life.

Narrative gerontology considers how people age biographically as well as socially and biologically. Vulnerability as a process category and state of being remains undertheorized in the context of narratives of later life. It is argued that the narrative space for stories from old age privilege backward-looking stories that focus on positive milestones and support cultural narratives of a "life well lived." Sad, emotionally laden or uncertain/unfinished stories that reveal vulnerabilities are rejected and potentially viewed as problematic. Using an illustrative case example of a study of resilience narratives and aging, this paper considers how the study authors position and identify resilience. Some interpretative judgements used in the research regarding who is resilient based on expressions of vulnerability are highlighted. Overall, the tensions between cultural and personal narratives that position older people as vulnerable subjects are considered and it is argued that vulnerability can be a great source of strength and meaning in later life.

Age does matter for hospice care: Health care providers' attitudes toward hospice care in Binzhou, China.

Death is still a taboo subject in China. Consequently, hospice remains a relatively new concept in many parts of China. In addition, China is also a rapidly aging country which will likely impact health care delivery, making hospice a potentially effective addition to current healthcare systems. The goal of this study was to better understand health care providers' (physicians and nurses) views about potential hospice implementation, especially with regards to patients' age. Semi-structured, open-ended interviews were conducted with 15 health care providers in Binzhou. Most participants felt that hospice care was only appropriate for older patients and rarely, if ever, for younger ones regardless of disease or prognosis. They also mentioned the links between traditional Chinese medicine (TCM) and many hospice principles. Given deeply held cultural attitudes about dying, hospice implementation would be most successful if directed toward older patients with terminal prognosis and with an emphasis on TCM.

"We Don't Do Any of These Things Because We are a Death-Denying Culture": Sociocultural Perspectives of Black and Latinx Cancer Caregivers.

This qualitative study explored the unique challenges and experiences faced by Black and Latinx cancer survivors through the lens of their caregivers, including the specific cultural, social, and systemic factors that influence cancer survivorship experience within these communities in the United States. We conducted six focus group discussions (three Latinx and three Black groups) with a total of 33 caregivers of cancer survivors, (Mean age = 63 years). Data were analyzed using inductive content analysis; The sociocultural stress and coping model was used as a framework to interpret the findings. We identified three main themes: 1) families as (un)stressors in survivorship such as the vitality of social connections and families as unintended burden; 2) responses after diagnosis specifically whether to conceal or accept a diagnosis, and 3) experiencing health care barriers including communication gaps, biased prioritizing of care, and issues of power, trust, and need for stewardship. This study's findings align with previous research, highlighting the complex interplay between cultural, familial, and healthcare factors in cancer survivorship experiences within underserved communities. The study reiterates the need for culturally tailored emotional, physical, financial, and informational support for survivors and their caregivers. Also, the study highlights a need to strengthen mental health and coping strategies, to help address psychological distress and improve resilience among survivors and their caregivers.

The AgeSmart Inventory©: A Multifaceted Tool to Understand Age Bias.

Ageism has been recognized as a global problem leading to poorer health, isolation, and workplace discrimination toward people based on their age. Consequently, there are several tools that measure levels and types of ageism with a focus on the quantification of degrees and types of ageism. While such quantification is valuable, this paper describes the development of an inventory, created over four stages, designed to foster introspective and collaborative thinking about age-directed values. In Stage 1, 34 items were identified through a comprehensive literature review. In Stage 2, the items were evaluated and revised via a focus group discussion. In Stage 3, the revised ASI was administered to a representative U.S. sample (N = 513). Based on factor and conceptual analysis, a revised version was tested on a second sample (N = 507) (Stage 4) and again revised. The final ASI consists of 35 age-related statements: 22 psychometrically linked to one of four domains, six related to identity, and seven that, although not aligned with statistical results, are conceptually important. Rather than provide an ageism score, the ASI is a tool for introspection and reflection about individual values and judgements about age which can lead to customized strategies to address potential age biases.

Lesbian, Gay, and Bisexual Widows' Experiences of Grief, Identity, and Support: A Qualitative Study of Relationships Following the Loss of a Spouse or Partner.

OBJECTIVES: Research with lesbian, gay, and bisexual (LGB) older widows rarely focuses on familial relationships. Studies on heterosexual spousal bereavement indicate older widows face issues influencing identity but show resilience by maintaining close relationships with adult children and extended family. Though research with older LGB widows suggests similarities around loss and resilience, grief and family engagement are markedly different. METHODS: Guided by Relational Cultural Theory, which illuminates how LGB women cope through connection/disconnection, this qualitative descriptive study employed semistructured, open-ended interviews with 16 LGB women, 60-85 years of age from across the United States who had lost a spouse or partner within the past 5 years. We conducted interviews regarding the perception of self as bereaved LGB women and sustained or altered relationships with biological and chosen families following the loss of their spouses/partners. RESULTS: Findings are illustrated in three themes around acceptance, support, and identity. Participants: (a) experienced differing levels of acceptance, tolerance, and inclusion from biological families; (b) experienced family or friends "disappearing" or providing critical support following a spouse/partner's death; and (c) negotiated challenges by creating or seeking out families of choice, new communities, and a better understanding of themselves. DISCUSSION: While LGB widows share some grief experiences with heterosexual widows, they also experience varying biological family acceptance and support, as well as the need for friends and families of choice as advocates. It is important to recognize the unique consequences of spousal loss for this population and be cognizant of the differences in normative grief.

Till Death Do Us Part?: Exploring the Social Convoys of Conjugally Bereaved Women.

OBJECTIVES: The hierarchical mapping technique (HMT) is used to study social convoys, peoples' support systems. Recent research integrating the HMT and the continuing bonds framework suggests that deceased persons may be influential convoy members. Extending this idea, the current study aimed to gain insight regarding how older conjugally bereaved women view the role of a deceased romantic partner in their convoy. METHODS: The study utilized a qualitative descriptive approach. Twenty heterosexual women (mean age = 78 years, range = 65-93 years), recruited via social media and snowball sampling, participated in one 90-min interview. Each discussed their bereavement journey and completed an HMT diagram to comment on how, if at all, their deceased romantic partner was part of their social convoy and their place within it. RESULTS: Fifteen of the 20 women placed the deceased in the innermost circle of the diagram, with them yet separate from other convoy members. Thematic analysis of transcripts revealed 5 major themes: "We're part of each other," "I think he supports me," "He would want me to be happy," "I just feel so grateful," and "I think about him every day but I don't talk about him every day." DISCUSSION: Perceptions that deceased romantic partners continue to play a key role in conjugally bereaved older women's lives offer researchers the unique opportunity to examine how loss is carried into old age. Furthermore, this study may assist with the development of interventions that destigmatize continuing bond expressions for conjugally bereaved heterosexual women.

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.

In the Shadows of Others: Unheard Voices of Older Russian Immigrant Women in the United States.

Older post-Soviet immigrants in the U.S. have been largely overlooked by research despite their unique experience of having lived in a totalitarian regime until middle age, only to find their lives profoundly altered after its fall. Our qualitative study examined the experiences and caregiving expectations of 16 older post-Soviet immigrant women (mean age = 74.5 years, SD =5.8) through in-depth, face-to-face interviews. Data analysis revealed four themes: broken family ties, happiness in the little things that money can buy, intergenerational comparison, and a nursing home is not an option. Overall, our findings emphasize immigration as an important life course event, with profound implications to one's social position, familial ties, employment opportunities contributes to a deeper understanding of how historical context shapes the aging experiences and intergenerational relationships.

"By the time she got sick it was just kind of too late": A qualitative study on advanced care planning among bereaved lesbian, gay, and bisexual older women.

BACKGROUND: Lesbian, gay, and bisexual (LGB) older women have unmet communication needs around palliative and end-of-life care. Past research has found communication differences for LGB women patients. Consequently, older LGB women may experience healthcare communication barriers around advance care planning. AIM: To explore experiences of bereaved LGB older women to understand perspectives regarding advance care planning communication between clinicians, patients, and dyads. DESIGN: Guided by queer gerontology as a theoretical framework, this qualitative descriptive study employed individual interviews with purposively recruited participants. Interviews were conducted in person using a semi structured protocol and analyzed using inductive thematic analysis. SETTING/PARTICIPANTS: Sixteen LGB women, age 60 years or older from across the United States who had lost a spouse/partner within the past 5 years. RESULTS: Four main themes emerged from the transcripts, LGB older women: (1) experience unclear advance care planning communication and end-of-life care support from clinicians, (2) often avoid advance care planning discussions with spouse or partners, (3) lack of knowledge about palliative or end-of-life care, and (4) have more positive experiences when there is consistent communication with spouse or partner and clinicians during a spouse/partner's illness and end-of-life. DISCUSSION: While certain experiences and opinions may reflect those of non-LGB older adults, novel advance care planning barriers exist for LGB older women. Greater understanding among clinicians is needed regarding advance care planning conversations with LGB dyads. We recommend four improvements in training, recognition, acceptance, and dyad-based communication interventions.

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.

"We Are Doing These Things So That People Will Not Laugh at Us": Caregivers' Attitudes About Dementia and Caregiving in Nigeria.

Some Nigerians, in their effort to make sense of dementia symptoms, use descriptions that may stigmatize people with dementia and their families. This qualitative descriptive study focused on the everyday understanding of dementia and the impact of stigma on the caregiving experiences of informal female Nigerian dementia caregivers. Semi-structured interviews were conducted with a purposive sample of 12 adult informal female caregivers in Nigeria and analyzed for themes. Afterward, results were presented to focus groups of 21 adult Nigerians residing in the United States for more contextual insight on the findings. The three major themes were misconceptions about dementia symptoms, caregiving protects against stigmatization, and stigma affects caregiving support. Overall, we argue that knowledge deficit, poor awareness, and traditional spiritual beliefs combine to drive dementia-related stigmatization in Nigeria. Strategies such as culturally appropriate dementia awareness campaigns and formal long-term care policies are urgently needed to help strengthen informal dementia caregiving in Nigeria.

We Speak a Different Language: End-of-Life and Bereavement Experiences of Older Lesbian, Gay, and Bisexual Women Who Have Lost a Spouse or Partner.

We examine the end-of-life (EOL) experiences, communications, and grief support during and after their loved one's death of older lesbian, gay, and bisexual women (LGB) ages 60 to 85 who have lost a spouse or partner. Queer gerontology was used as a theoretical framework, and descriptive qualitative analytical methods were used to discern themes. Through semi-structured interviews with a purposive sample of 16 participants, we identified two main themes: Gathering the Women and Compassionate Care. Although older LGB women may have some similar support needs as non-LGB adults, other needs are distinct but often unmet. While our participants' interactions with health care professionals were overtly positive, there was often a lack of communication about grief resources, including lesbian and women-specific grief groups. Overall researchers, policymakers, and practitioners should be mindful of the importance of fully integrating and including populations into their care practices to avoid creating systems of superficial tolerance.

Exploring cause of death as a factor in social convoy membership: the case of Pauline.

Research integrating social convoy and continuing bonds frameworks suggests that deceased individuals can be included in convoys as connections may carry on after death. Building on this, we present a qualitative case study that explores whether such relationships are influenced by the way people die. Pauline, 67, compares the "natural" deaths of relatives to her husband's suicide. Analysis of Pauline's interview revealed that the unexplained death of her husband impacted her identity and contributed to his continued existence within her convoy. Consequently, the cause of death may be an important consideration for researchers integrating the social convoy and continuing bonds frameworks.

"Place" in the Small Stories of African American Elders: A Narrative Case Study.

BACKGROUND AND OBJECTIVES: Although there is a rich literature on place and home within gerontology, few studies have considered how place acts as identity markers for older African Americans. Since narratives and stories represent ways of expressing self and identity through ordered talk, they offer an interesting way to consider how people age biographically such as through links between place and self. RESEARCH DESIGN AND METHODS: We analyzed small stories (i.e., stories that can appear as snippets of talk immersed within a larger narrative) from five African Americans (three women, two men, ages 78-93 years) to better understand "place" in the context of their lives. RESULTS: Overall, place in participants' small stories was linked to the African American oral tradition and, for some, the Great Migration (1915-1970) from south to north. Place identity in the small stories therefore went beyond fond reminisce and instead became a type of resistance to dominant narratives of place. DISCUSSION AND IMPLICATIONS: Studying small stories can therefore be an important tool in better understanding deeply personal experiences of place for under-represented elders.

What Can Thinking Like a Gerontologist Bring to Bioethics?

I am a social gerontologist, broadly defined as a social scientist who studies how later life is experienced, structured, and controlled in a society and in social settings. Although gerontology is often confused with geriatrics (a medical specialty), gerontologists are typically not clinicians but may study issues related to old age and health care such as the societal conditions that shape how medical care is provided and financed and how early exposure to education relates to later life health. In this essay, I argue that thinking like a gerontologist is important when considering what makes a good life in late life. To think like a gerontologist is to consider the cultural and societal values-past and present-that shape the experience of aging, to recognize people as complex beings whose individual lives do not follow predictable patterns or easily identified trajectories, and to recognize our own habits of regarding older persons as "other" and the consequences of "othering" for older persons and social systems. After a brief history of gerontology, highlighting a few core concepts that gerontologists share, I propose three important questions to consider regarding a good life in late life.

"Play" and People Living With Dementia: A Humanities-Based Inquiry of TimeSlips and the Alzheimer's Poetry Project.

This paper is a humanities-based inquiry, applying Huizinga's framework of homo ludens ("man the player") to consider "play" in the context of two participatory arts programs (TimeSlips and the Alzheimer's Poetry Project) for people living with dementia. "Play," according to this Dutch historian, is at the heart of human activity and what gives meaning to life. Despite empirical research on play across the life course, play in dementia care is a relatively new idea. In addition, there is a dearth of reports based on humanistic inquiry which has slightly different goals than the growing body of qualitative and quantitative studies of participatory arts interventions. Play is not used to infantilize and trivialize people living with dementia but as a way to explore potential for expression, meaning-making, and relationship-building in later life. The arts programs were conducted at two residential care facilities, Scharwyerveld and De Beyart, in the Netherlands over 10 weeks. Close readings of the transcripts and notes from the programs resulted in three observations: people learned to play again, there is power in playing together, and play often led to expressions of joy. Overall, the notion of play may be a helpful framework for future research into innovative arts-based approaches to dementia care.