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1.
Perspect Biol Med ; 65(2): 274-282, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938435

RESUMO

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.


Assuntos
Demência , Ambiente Domiciliar , Humanos , Respeito , Incerteza
2.
Artigo em Inglês | MEDLINE | ID: mdl-35976106

RESUMO

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 - minute 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 five 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 offers researchers the unique opportunity to examine how loss is carried into old age. Further, this study may assist with the development of interventions that destigmatize continuing bond expressions for conjugally bereaved heterosexual women.

3.
Dementia (London) ; 21(4): 1200-1218, 2022 May.
Artigo em Inglês | MEDLINE | ID: mdl-35232292

RESUMO

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.


Assuntos
Doença de Alzheimer , Demência , Tomada de Decisões , Humanos , Consentimento Livre e Esclarecido , Procurador
4.
J Cross Cult Gerontol ; 37(1): 69-88, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35022920

RESUMO

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.


Assuntos
Emigrantes e Imigrantes , Emigração e Imigração , Idoso , Envelhecimento , Feminino , Humanos , Pesquisa Qualitativa , Federação Russa , Estados Unidos
6.
Gerontologist ; 62(8): 1097-1103, 2022 Sep 07.
Artigo em Inglês | MEDLINE | ID: mdl-34951632

RESUMO

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.


Assuntos
Bioética , Geriatria , Equidade em Saúde , Ciências Humanas , Humanos , Justiça Social
7.
Palliat Med ; 36(2): 375-385, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34933628

RESUMO

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.


Assuntos
Planejamento Antecipado de Cuidados , Minorias Sexuais e de Gênero , Assistência Terminal , Idoso , Bissexualidade , Feminino , Humanos , Pessoa de Meia-Idade , Pesquisa Qualitativa , Estados Unidos
8.
Qual Health Res ; 31(8): 1448-1458, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33834901

RESUMO

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.


Assuntos
Cuidadores , Demência , Adulto , Atitude , Feminino , Humanos , Nigéria , Pesquisa Qualitativa , Estados Unidos
9.
Qual Health Res ; 31(9): 1670-1679, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33834917

RESUMO

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.


Assuntos
Luto , Minorias Sexuais e de Gênero , Adulto , Idoso , Idoso de 80 Anos ou mais , Morte , Feminino , Pesar , Humanos , Idioma , Pessoa de Meia-Idade , Cônjuges
10.
J Women Aging ; 33(2): 170-183, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33170100

RESUMO

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.


Assuntos
Rede Social , Apoio Social , Cônjuges/psicologia , Suicídio , Idoso , Causas de Morte , Feminino , Pesar , Humanos , Entrevistas como Assunto , Pesquisa Qualitativa
11.
Gerontologist ; 60(5): 793-796, 2020 07 15.
Artigo em Inglês | MEDLINE | ID: mdl-32449509
12.
Gerontologist ; 60(5): 821-830, 2020 07 15.
Artigo em Inglês | MEDLINE | ID: mdl-31504489

RESUMO

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.


Assuntos
Afro-Americanos/psicologia , Narração , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Meio Social
13.
Hastings Cent Rep ; 48 Suppl 3: S10-S14, 2018 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-30311223

RESUMO

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.


Assuntos
Envelhecimento/psicologia , Geriatras/psicologia , Qualidade de Vida , Bioética , Características Culturais , Envelhecimento Saudável/psicologia , Humanos , Expectativa de Vida , Fatores Sexuais , Fatores Socioeconômicos
14.
J Appl Gerontol ; 37(12): 1564-1575, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-27899701

RESUMO

Animal-assisted activity programs are commonly used in long-term care facilities to enhance the well-being of older residents. Although research suggests that older adults benefit from these programs, little is known about the experience from the perspective of older adults themselves. In this qualitative study, we used direct observation and in-depth interviews to gain an understanding of the experience of participating in a unique rabbit-assisted activity program delivered in a Midwestern residential facility. Several benefits were identified, with no negative experiences articulated by the participants. In addition to finding the rabbits soothing, the rabbits served as a source of social support for some participants and encouraged social interaction. Participants generally felt that rabbits are good animals to use for this type of activity, but expressed a desire for more frequent, longer, and more interactive visits. Facilities considering animal-assisted activities (AAA) programs should consider these factors when designing their programs.


Assuntos
Terapia Assistida com Animais , Instituições Residenciais , Idoso , Idoso de 80 Anos ou mais , Animais , Comunicação , Feminino , Humanos , Entrevistas como Assunto , Masculino , Observação , Pesquisa Qualitativa , Coelhos , Relaxamento , Participação Social , Apoio Social , Fatores de Tempo
15.
Dementia (London) ; 17(6): 763-774, 2018 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-28905649

RESUMO

This article examines connections between language, identity, and cultural difference in the context of participatory arts in residential dementia care. Specifically, it looks at how language differences become instruments for the language play that characterizes the participatory arts programs, TimeSlips and the Alzheimer's Poetry Project. These are two approaches that are predominantly spoken-word driven. Although people living with dementia experience cognitive decline that affects language, they are linguistic agents capable of participating in ongoing negotiation processes of connection, belonging, and in- and exclusion through language use. The analysis of two ethnographic vignettes, based on extensive fieldwork in the closed wards of two Dutch nursing homes, illustrates how TimeSlips and the Alzheimer's Poetry Project support them in this agency. The theoretical framework of the analysis consists of literature on the linguistic agency of people living with dementia, the notions of the homo ludens (or man the player) and ludic language, as well as linguistic strategies of belonging in relation to place.


Assuntos
Arte , Idioma , Participação do Paciente , Jogos e Brinquedos , Antropologia Cultural , Demência/psicologia , Feminino , Humanos , Masculino , Países Baixos , Casas de Saúde , Qualidade de Vida
16.
Gerontologist ; 58(2): 261-269, 2018 03 19.
Artigo em Inglês | MEDLINE | ID: mdl-28329857

RESUMO

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.


Assuntos
Arteterapia/métodos , Demência , Jogos e Brinquedos/psicologia , Idoso , Técnicas de Observação do Comportamento , Criatividade , Demência/psicologia , Demência/terapia , Feminino , Ciências Humanas/psicologia , Humanos , Masculino , Países Baixos , Avaliação de Programas e Projetos de Saúde
17.
Gerontologist ; 57(2): 171-178, 2017 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-26209796

RESUMO

Purpose of the Study: This article presents a narrative-based case study about chronic illness and genetic uncertainty and their relationship to generativity throughout the life course. Our focus is a woman who experienced vision loss early in life and interpreted its impact on her generativity through present-day biographical rescripting. Design and Methods: The case we present was chosen from the study "Generativity and Lifestyles of Older Women," which explored life history, social relations, and forms of generativity in an ethnographic interview format with 200 older women. Results: In constructing a present-day identity, the informant used shifting and conflicted self-constructions to produce a self-image as generative. Three critical themes emerged in understanding her life course: (a) retrospective interpretations of autonomy; (b) renegotiating control in the present, and (c) generativity across the life course. Implications: This article contributes an understanding of childlessness as observed through the lenses of chronic illness, autonomy, and generativity. We conclude that a history of chronic illness, as it is co-occurring with internal debates about the meaning of key life events, may influence older adults' present-day identity. Implications for later life care needs are discussed.


Assuntos
Cegueira , Autonomia Pessoal , Comportamento Reprodutivo , Autoimagem , Idoso de 80 Anos ou mais , Cegueira/etiologia , Doença Crônica , Emoções , Feminino , Glaucoma/complicações , Glaucoma/genética , Humanos , Narração
19.
Int Psychogeriatr ; 28(5): 779-86, 2016 May.
Artigo em Inglês | MEDLINE | ID: mdl-26673910

RESUMO

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.


Assuntos
Doença de Alzheimer/psicologia , Apatia , Agitação Psicomotora/epidemiologia , Idoso , Idoso de 80 Anos ou mais , Brasil , Feminino , Humanos , Modelos Lineares , Masculino , Testes Neuropsicológicos , Inventário de Personalidade , Escalas de Graduação Psiquiátrica
20.
Gerontologist ; 56(3): 559-68, 2016 06.
Artigo em Inglês | MEDLINE | ID: mdl-25352535

RESUMO

PURPOSE OF THE STUDY: We explored how generativity and well-being merged in a group of childless older women: African and Hispanic Roman Catholic Religious Sisters, linking two minority identity characteristics. DESIGN AND METHODS: We qualitatively interviewed 8 Oblate Sisters of Providence (OSP), by providing a framework for examining the range of the women's generativity-cultural spheres in which generativity is rooted and outlets for generativity. RESULTS: Early negative experiences, such as fleeing despotism in Haiti and Cuba and racism within the Catholic Church, occurred alongside positive experiences-families who stressed education, and Caucasian Religious who taught children of color. This became a foundation for the Sister's generative commitment. IMPLICATIONS: Findings highlight that research gains from a phenomenological understanding of how religious faith promotes generative cognitions and emotions. Findings also reveal that the experiences of a subculture in society-African-American elderly women religious-add to theories and definitions of generativity.


Assuntos
Envelhecimento/etnologia , Catolicismo , Relação entre Gerações , Afeto , Afro-Americanos/psicologia , Idoso , Envelhecimento/psicologia , Cognição , Cultura , Feminino , Humanos , Entrevistas como Assunto , Pesquisa Qualitativa , Qualidade de Vida , Religião e Psicologia , Irmãos
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