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.

OBJECTIVES: Cancer is an enormous public health burden among Black and Latinx cancer survivors, and they are at risk of facing barriers to accessing cancer treatment and support in the United States. This 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 and quality of life within these communities in the United States. METHODS: We used a qualitative descriptive design for the study, and conducted 6 focus group discussions (3 Latinx and 3 Black groups) with a total of 33 caregivers of cancer survivors, (Mean age = 63 years). Data were analyzed using inductive content analysis. RESULTS: We identified 3 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. SIGNIFICANCE OF RESULTS: The 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, to improve quality of life, 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.

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.

"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.

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.

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.

"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.

Association of neuropsychiatric syndromes with global clinical deterioration in Alzheimer's disease patients.

BACKGROUND: Data on the relationship between behavioral disturbances in Alzheimer's disease (AD) and global clinical deterioration is still controversial. The purpose of this study was to explore potential correlations of neuropsychiatric syndromes with global clinical deterioration in patients with AD, with particular consideration on severity levels of dementia. METHODS: AD patients (n = 156) aged 76.7 years from Brazilian clinical centers were assessed to diagnose the five neuropsychiatric syndromes measured by the Neuropsychiatric Inventory-Clinician rating scale (NPI-C): psychosis, agitation, affective, apathy, and sleep. These syndromes were then analyzed for their correlation with the Global Deterioration Scale (GDS). To analyze the association of neuropsychiatric syndromes with the GDS, considering the total sample and patients grouped by dementia severity levels, we applied the coefficient of multiple correlation (Ryy), adjusted multiple linear regression, and the coefficient of determination (R2yx). We tested the significance of correlation coefficients using the Student t-test for simple correlations (a single independent variable) and analysis of variance (ANOVA) for multiple correlations. ANOVA was also used to compare means of demographic and some clinical variables at different levels of dementia. RESULTS: For the total sample, apathy and agitation syndromes were most strongly correlated (0.74; 0.72, respectively) with clinical deterioration according to the GDS, followed by psychosis (0.59), affective (0.45), and sleep syndromes (0.34). Agitation significantly correlated with mild and moderate dementia (CDR 1: 0.45; and CDR 2: 0.69, respectively). At CDR 2, agitation and affective syndromes were most strongly correlated (0.69; 0.59, respectively) with clinical deterioration while at CDR 3, the apathy syndrome was most strongly correlated with clinical deterioration (0.52). CONCLUSIONS: Agitation, apathy, and affective disorders were the syndromes most strongly correlated with global deterioration in AD patients, becoming more evident at severe stages of dementia.

Caregiver report versus clinician impression: disagreements in rating neuropsychiatric symptoms in Alzheimer's disease patients.

BACKGROUND: The measurement of neuropsychiatric symptoms (NPS) in dementia is often based on caregiver report. Challenges associated with providing care may bias the caregiver's recognition and reporting of symptoms. Given potential problems associated with caregiver report, clinicians may improve measurement by drawing from a wider array of available data and by applying clinical judgment. OBJECTIVE: The objective of this study is to evaluate potential disagreements between caregiver report and clinician impression when rating psychopathological manifestations from the same patient with dementia. METHODS: Three hundred twelve participants (156 patients with Alzheimer's disease [AD] and 156 caregivers) were studied using the Neuropsychiatric Inventory-Clinician Rating Scale. We considered disagreement to be present when caregiver ratings were significantly higher or lower (p < 0.05) than NPS ratings by clinicians of the same patient. To evaluate whether disagreements were related to dementia severity, we repeated comparisons across levels defined by the clinical dementia rating. RESULTS: The most common disagreements involved ratings of agitation, depression, anxiety, apathy, irritability, and aberrant motor behavior especially in patients with mild dementia. There were fewer discrepancies in moderate or severe dementia. The most consistent disagreements involved global ratings of depression where caregiver scores ranged from +22.5 higher to -4.5 lower than clinician rating. CONCLUSIONS: Caregivers may have incomplete perception of patient NPS mainly in mild dementia. NPS ratings might be confounded by cultural beliefs, sometimes leading caregiver to interpret symptoms as part of "normal" aging.

Perceived Facilitators and Barriers in Implementing Hospice Care: A Qualitative Study Among Health Care Providers in Binzhou, China.

Although many large Chinese cities have begun to implement hospice services, hospice care is still a relatively new concept in many parts of the country, especially in smaller cities. The purpose of this study was to gain a better understanding of health care providers' (physicians and nurses) perceptions of the facilitators and barriers to hospice care implementation in a fourth-tier city. Using a qualitative descriptive approach, semi-structured, open-ended interviews were conducted with 15 health care providers. Two major categories for developing hospice care were identified: (a) prospective facilitators and (b) perceived barriers. In addition, there is currently much ambiguity regarding what agency should oversee hospice services if implemented, who should be responsible for payment, the importance of developing interdisciplinary care teams and concerns about worker shortages. Future research is encouraged to investigate attitudes towards hospice care across various local healthcare systems and to promote the development of local hospice care support.

The Brazilian version of the Neuropsychiatric Inventory-Clinician rating scale (NPI-C): reliability and validity in dementia.

BACKGROUND: Patients with dementia may be unable to describe their symptoms, and caregivers frequently suffer emotional burden that can interfere with judgment of the patient's behavior. The Neuropsychiatric Inventory-Clinician rating scale (NPI-C) was therefore developed as a comprehensive and versatile instrument to assess and accurately measure neuropsychiatric symptoms (NPS) in dementia, thereby using information from caregiver and patient interviews, and any other relevant available data. The present study is a follow-up to the original, cross-national NPI-C validation, evaluating the reliability and concurrent validity of the NPI-C in quantifying psychopathological symptoms in dementia in a large Brazilian cohort. METHODS: Two blinded raters evaluated 312 participants (156 patient-knowledgeable informant dyads) using the NPI-C for a total of 624 observations in five Brazilian centers. Inter-rater reliability was determined through intraclass correlation coefficients for the NPI-C domains and the traditional NPI. Convergent validity included correlations of specific domains of the NPI-C with the Brief Psychiatric Rating Scale (BPRS), the Cohen-Mansfield Agitation Index (CMAI), the Cornell Scale for Depression in Dementia (CSDD), and the Apathy Inventory (AI). RESULTS: Inter-rater reliability was strong for all NPI-C domains. There were high correlations between NPI-C/delusions and BPRS, NPI-C/apathy-indifference with the AI, NPI-C/depression-dysphoria with the CSDD, NPI-C/agitation with the CMAI, and NPI-C/aggression with the CMAI. There was moderate correlation between the NPI-C/aberrant vocalizations and CMAI and the NPI-C/hallucinations with the BPRS. CONCLUSION: The NPI-C is a comprehensive tool that provides accurate measurement of NPS in dementia with high concurrent validity and inter-rater reliability in the Brazilian setting. In addition to universal assessment, the NPI-C can be completed by individual domains.

Childless Elders in Assisted Living: Findings from the Maryland Assisted Living Study.

We compared data drawn from a random sample of 399 current assisted living (AL) residents and a subsample of 222 newly admitted residents for two groups: childless AL residents and AL residents with children. The percentage of childless AL residents (26%) in our study was slightly higher than US population estimates of childless persons age 65 and over (20%). In the overall sample, the two groups differed significantly by age, race and women's years of education. The childless group was slightly younger, had a higher percentage of African American residents, and had more years of education than the group with children. In the subsample, we looked at demographic, functional, financial and social characteristics and found that compared to residents with children, fewer childless residents had a dementia diagnosis, received visits from a relative while more paid less money per month for AL and reported having private insurance. As childlessness among older adults continues to increase, it will become increasingly important to understand how child status affects the need for and experience of long-term care.

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.

"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.

How are gerontology doctoral graduates viewed in the academic job market? Findings from an exploratory study.

Although doctorally trained gerontologists have unique types of expertise as a result of their interdisciplinary training, research exploring perceptions of their hirability in faculty positions is lacking. This exploratory study examined the perceptions of administrators and faculty at institutions identified as having a doctoral program in gerontology or a doctoral program in another aging-related area. A short, semistructured 27 question survey was disseminated online. Twenty-five (N = 25) deans, associate deans, or other faculty participated in this study. Results indicate varying views of the attractiveness of hiring doctorally trained gerontologists, who or what is a gerontologist, and the value of having a doctorally trained gerontologist as a faculty member.

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.

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.