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1.
J Aging Health ; 36(9): 570-582, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-38887015

RESUMO

OBJECTIVE: To examine racial and ethnic differences in costs of informal caregiving among older adults with dementia in the United States. METHODS: We used data from the 2002 to 2018 Health and Retirement Survey to estimate annual informal care hours for adults with dementia (n = 10,015). We used regression models to examine racial and ethnic differences in hours of informal care for activities of daily living (ADL) and instrumental ADL, controlling for demographic characteristics, education, and level of disability. RESULTS: Our sample was 70% non-Hispanic White, 19% non-Hispanic Black, and 11% Hispanic. Hispanics received, on average, 35.8 hours of informal care each week, compared to 30.1 for Blacks and 20.1 for Whites. Racial and ethnic differences persisted when controlling for covariates. DISCUSSION: Informal care is a greater cost to racial and ethnic minoritized families. Informal care was valued at a replacement cost of $44,656 for Hispanics, $37,508 for Blacks, and $25,121 for Whites.


Assuntos
Negro ou Afro-Americano , Cuidadores , Demência , Hispânico ou Latino , Brancos , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Atividades Cotidianas , Cuidadores/economia , Cuidadores/psicologia , Demência/etnologia , Estados Unidos
2.
PEC Innov ; 4: 100290, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38799257

RESUMO

Objectives: This study aims to examine the change in financial strain, health behaviors, and psychological well-being of family caregivers of older adults during the COVID-19 pandemic and explore the differences in mental health outcomes by gender, race, and relationship status. Methods: Using the 2020 National Health and Aging Trends Study COVID-19 supplement, our sample included 2026 family caregivers of older adults. Structural equation modeling was conducted. Results: Caregivers with financial strain showed worse mental health than those with no financial strain. Female or adult children caregivers reported significantly less time walking, more financial strain, and a higher level of negative mental health outcomes compared to male or spouse caregivers; non-White caregivers reported greater positive mental health outcomes compared to White caregivers during the pandemic. Discussion: Health professionals should consider the financial and mental health impact of COVID-19 among family caregivers when designing and delivering caregiver support programs. Innovation: This study provides nationally representative estimates of several important health behaviors and health outcomes for caregivers of older adults during and after the COVID-19 pandemic, helping to fill the knowledge gap about the characteristics of caregivers whose health and well-being were most affected by the pandemic.

3.
Gerontologist ; 64(7)2024 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-38794947

RESUMO

BACKGROUND AND OBJECTIVES: As long-term care increasingly moves from facilities to the community, paid caregivers (e.g., home health aides, other home care workers) will play an increasingly important role in the care of people with dementia. This study explores the paid caregiver role in home-based dementia care and how that role changes over time. RESEARCH DESIGN AND METHODS: We conducted individual, longitudinal interviews with the paid caregiver, family caregiver, and geriatrician of 9 people with moderate-to-severe dementia in the community; the 29 total participants were interviewed on average 3 times over 6 months, for a total of 75 interviews. Interviews were recorded, transcribed, and analyzed with structured case summaries and framework analysis. RESULTS: Paid caregivers took on distinct roles in the care of each client with dementia. Despite changes in care needs over the study period, roles remained consistent. Paid caregivers, family caregivers, and geriatricians described the central role of families in driving the paid caregiver role. Paid and family caregivers collaborated in the day-to-day care of people with dementia; paid caregivers described their emotional relationships with those they cared for. DISCUSSION AND IMPLICATIONS: Rather than simply providing functional support, paid caregivers provide nuanced care tailored to the needs and preferences of not only each person with dementia (i.e., person-centered care), but also their family caregivers (i.e., family-centered care). Deliberate cultivation of person-centered and family-centered home care may help maximize the positive impact of paid caregivers on people with dementia and their families.


Assuntos
Cuidadores , Demência , Humanos , Cuidadores/psicologia , Demência/enfermagem , Masculino , Feminino , Idoso , Idoso de 80 Anos ou mais , Estudos Longitudinais , Serviços de Assistência Domiciliar/economia , Geriatras/psicologia , Pessoa de Meia-Idade , Assistência de Longa Duração/economia , Pesquisa Qualitativa , Visitadores Domiciliares/psicologia , Família/psicologia
4.
BMC Geriatr ; 24(1): 409, 2024 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-38720258

RESUMO

BACKGROUND: This study aims to (1) determine the reliability and validity of the interRAI Chinese Self-reported Carer Needs (SCaN) assessment among informal Chinese caregivers of older adults, (2) identify predictors of caregiving distress in Asian regions with long-standing Confucian values of filial piety and family responsibility. METHODS: This cross-sectional study recruited 531 informal Chinese caregivers of older adults in Hong Kong, Shanghai, Taiwan, and Singapore. The scale reliability was examined using Cronbach's alphas (α) and McDonald's omega coefficient (ω). The concurrent validity and discriminant validity were assessed using Spearman rank correlations (rho). To examine the predictors of caregiving distress among informal caregivers of older adults, we employed hierarchical linear regression analyses informed by the Model of Carer Stress and Burden and categorized the predictors into six domains. RESULTS: Results revealed good internal consistency reliability (α = 0.83-0.96) and concurrent validity (rho = 0.45-0.74) of the interRAI Chinese SCaN assessment. Hierarchical linear regression analysis revealed that entering the background factors, primary stressors, secondary stressors, appraisal, and exacerbating factors all significantly enhanced the model's predictability, indicating that the source of caregiving distress is multidimensional. In the full model, caregivers with longer informal care time, lack of support from family and friends, have unmet needs, experience role overload, have sleep problems, and low IADL functioning are at a higher risk of caregiving distress. CONCLUSIONS: The interRAI Chinese SCaN Assessment was found to be a reliable and valid tool among the Chinese informal caregivers of older adults. It would be useful for determining family caregivers' strengths, needs, and challenges, and tailoring interventions that address the potentially modifiable factors associated with caregiving distress and maximize support. Healthcare providers working in home and community settings should be aware of the early identification of caregiving distress and routine assessment of their needs and empower them to continue taking care of their needs and providing adequate care to the care recipient.


Assuntos
Cuidadores , Avaliação das Necessidades , Autorrelato , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidadores/psicologia , China/epidemiologia , Estudos Transversais , População do Leste Asiático , Reprodutibilidade dos Testes , Estresse Psicológico/psicologia , Estresse Psicológico/diagnóstico , Estresse Psicológico/epidemiologia , Taiwan/epidemiologia , Hong Kong/epidemiologia , Singapura/epidemiologia
5.
Aging Ment Health ; 28(10): 1390-1400, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-38629413

RESUMO

OBJECTIVES: This research study aimed to discover how dementia affecting older people was perceived, experienced, and managed by stakeholders in the Pacific Island country of Fiji. METHOD: A transformational grounded theory approach was used. Semi-structured interviews and focus groups with key stakeholders in the major towns of Suva, Lautoka, and Nadi were carried out. Transcripts were analysed in line with transformational grounded theory methods. RESULTS: A total of 50 participants (40 service providers, eight family caregivers, one person with dementia, and one village elder) shared their views and experiences about dementia. A grounded theory about dementia care management was constructed. 'Letting it be' is the grounding socio-cultural construct that interweaves and binds together the processes of dementia care management. It expresses a compassionate approach to caring for older people with dementia that involves searching for knowledge and support, and application of traditional care practices within the strength of family and community networks. CONCLUSION: In Fiji, support for dementia centres on the integration of community understandings, and promotion of cultural values of wellbeing and care, with service provision. It also focuses on support for families and communities through social welfare, community networks, and education.


Assuntos
Cuidadores , Demência , Teoria Fundamentada , Humanos , Fiji , Demência/terapia , Feminino , Masculino , Idoso , Cuidadores/psicologia , Pessoa de Meia-Idade , Pesquisa Qualitativa , Grupos Focais , Adulto
6.
BMC Health Serv Res ; 24(1): 370, 2024 Mar 25.
Artigo em Inglês | MEDLINE | ID: mdl-38528523

RESUMO

BACKGROUND: This study evaluates cost reduction in participants of a health awareness program (the Center of Healthy Aging Program, CHAP) in a Japanese rural area, characterized by an annual check-up and personalized interview on health issues and related risks immediately after the check-up. METHODS: This is a cross-sectional study using medical and caregiving costs and Japan-specific health check-up results in Hirosaki residents stored by the local government, which were individually-based linked to the CHAP information collected by Hirosaki University. This is the first study that used anonymized data with individually-based linkages to both a research institute and a local government in Japan under a strict limitation regarding linking to third-party data. We included residents who had been continuously enrolled for > 6 months as of 1 July 2015. We compared 5-year all-cause costs between three groups (with CHAP, with Japan-specific health check-up, and no check-up) using a multivariate negative binomial regression model considering risk factors including lifestyle habits and an inverse probability weight to adjust for baseline characteristics: age, sex, Charlson comorbidity index, baseline care level, and risk score of coronary heart diseases. RESULTS: A total of 384, 9805, and 32,630 residents aged 40-74 years were included for the CHAP, Japan-specific health check-up, and no check-up groups, respectively. The Japan-specific health check-up group showed older and higher Charlson comorbidity index than the others. After inverse probability weight adjusting, the amount of all-cause medical costs was significantly lower only in the CHAP group. Faster walking speed and exercise habits were independently associated with lower all-cause medical and caregiving costs. CONCLUSIONS: We demonstrated a 5-year all-cause cost reduction in residents who participated in the CHAP and also suggested the effect of exercise habits in Hirosaki, which indicated the significance of individually-based data linkages to external third-party data for all local governments to improve the health condition of residents.


Assuntos
Promoção da Saúde , Humanos , Japão , Estudos Transversais , Estudos Retrospectivos , Promoção da Saúde/métodos , Fatores de Risco
7.
Int J Aging Hum Dev ; : 914150241235088, 2024 Mar 04.
Artigo em Inglês | MEDLINE | ID: mdl-38436083

RESUMO

This study aims to investigate whether generational differences in intergenerational caregiving patterns (caring for parents only, caring for grandchildren only, and caring for parents and grandchildren simultaneously) are associated with cognitive health disparities among the sandwich generation within four-generation families, drawing upon the theories of intergenerational solidarity and intergenerational stake. Moreover, this study seeks to identify mediators that help explain these disparities. A nationally representative sample of 8,065 respondents was drawn from the 2011 and 2018 waves of the China Health and Retirement Longitudinal Study. The findings reveal that the sandwich generation caring for grandchildren only, as well as those caring for grandchildren and parents simultaneously, exhibit better cognitive health. However, caregiving for parents only is not significantly related to their cognitive health. This study identifies the inability to reduce depressive symptoms as a mediator explaining the insignificant association between caregiving for parents only and the cognitive health of the sandwich generation. The findings underscore the importance of offering support to the sandwich generation within four-generation families to enhance their cognitive health. Moreover, it is imperative to distinguish between different intergenerational caregiving patterns based on generational differences among the sandwich generation, with a specific emphasis on allocating public resources aimed at promoting cognitive health for those engaged in caring for parents.

8.
Clin Geriatr Med ; 40(2): 309-320, 2024 05.
Artigo em Inglês | MEDLINE | ID: mdl-38521601

RESUMO

Isolation, financial insecurity, incomplete advance care planning, and lack of safe/affordable/inclusive long-term care are challenges magnified in gender and sexual minorities. LGBTQIA+ older adults are disproportionately more likely to live alone and experience financial poverty and social isolation. LGBTQIA+ adults suffering from cognitive impairment are an especially defenseless population due to their lack of social connection and potential lack of financial resources and advance care planning.


Assuntos
Disfunção Cognitiva , Minorias Sexuais e de Gênero , Humanos , Idoso , Assistência de Longa Duração
9.
Epilepsy Behav ; 153: 109685, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38368790

RESUMO

OBJECTIVE: The aim of this study was to evaluate caregiver burden and factors associated with caregiver burden in caregivers of adults with epilepsy. MATERIALS AND METHODS: This descriptive cross-sectional study was conducted with 107 patients with epilepsy and 107 their primary caregivers. Personal information form including sociodemographic data and Zarit Caregiver Burden Inventory (ZBI), were used for caregivers, and patient information form, Montreal Cognitive Assessment Scale (MoCA), Hospital Anxiety and Depression Scale (HADS), Epilepsy Quality of Life Scale (QoLIE-31) and Stigma Scale were used for patients. RESULTS: Caregiver burden was found to be related to gender (p = 0.047), marital status (p = 0.008), income (p = 0.003), education level (p = 0.05) age at onset of epilepsy (p = 0.025) and type of therapy (p = 0.005). The scale scores for cognitive functions (p < 0.001), stigma (p < 0.001), anxiety (p = 0.001), depression (p = 0.005), and quality of life (p < 0.001) of the patient showed significant correlations with caregiver burden. In addition, caregiver burden was found to correlate with some caregiver characteristics such as caregivers' age (p = 0.041), gender (p < 0.001), education (p < 0.001), income (p = 0.001) and relationship with the patient (p = 0.016). Time spent on caregiving per day was also positively correlated with caregiving burden (p < 0.001). In regression analysis, the gender of the caregiver, the gender of the patient, the stigma level of patient, and the type of treatment were found to be predictors of care burden (p < 0.05, R2 = 0.61). CONCLUSION: It was found that two-thirds of the families of patients with epilepsy experienced varying degrees of caregiver burden. In addition, it was determined that caregiver burden was associated with sociodemographic and numerous psychosocial factors of the patient as well as the caregiver. It is important that both the caregiver and the patient being cared for are closely evaluated in interventions to reduce the caregiver burden in patients with epilepsy.


Assuntos
Epilepsia , Qualidade de Vida , Adulto , Humanos , Qualidade de Vida/psicologia , Sobrecarga do Cuidador , Efeitos Psicossociais da Doença , Estudos Transversais , Cuidadores/psicologia , Depressão/psicologia
10.
Geriatr Gerontol Int ; 24(3): 290-296, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38340020

RESUMO

AIM: To support informal caregivers, a simple assessment tool capturing the multidimensional nature of caregiving experiences, including negative and positive aspects, is required. We developed a short form of the Japanese version of the Caregiver Reaction Assessment (CRA-J), a multidimensional assessment scale for caregiver experiences. METHODS: The internet survey involved 934 Japanese informal caregivers aged 20-79 years (mean age = 58.8 years; 50.2% women) who completed questionnaires, including the CRA-J 18 items (CRA-J-18), consisting of five domains, such as impacts on schedule and finances and positive experiences of caregiving. A 10-item short version of the CRA-J (CRA-J-10; 0-50 points), which was prepared by selecting the two items with the highest factor loadings from each domain, was tested for model fit by confirmatory factor analysis (CFA) and was analyzed for correlations with the CRA-J-18, Zarit Burden Interview (ZBI), Positive Aspects of Caregiving Scale (PACS), Patient Health Questionnaire-9 (PHQ-9), and WHO-Five Well-Being Index (WHO-5). The area under the curve (AUC) in the receiver operating characteristic was evaluated as discriminability for depressive symptoms (PHQ-9 ≥ 10 points). RESULTS: The CFA indicated a good model fit in the CRA-J-10. The CRA-J-10 correlated well with the CRA-J-18 and other variables (CRA-J-18, r = 0.970; ZBI, r = 0.747; PACS, r = -0.467; PHQ-9, r = 0.582; WHO-5, r = -0.588) and showed good discriminant performance for the presence of depressive symptoms (AUC = 0.793, 95% confidence interval = 0.762-0.823). CONCLUSIONS: The CRA-J-10 allows a simple assessment of caregiver experiences, helping support informal caregivers. Geriatr Gerontol Int 2024; 24: 290-296.


Assuntos
Cuidadores , Questionário de Saúde do Paciente , Humanos , Feminino , Idoso , Masculino , Japão , Inquéritos e Questionários , Análise Fatorial
11.
BMC Nurs ; 23(1): 115, 2024 Feb 13.
Artigo em Inglês | MEDLINE | ID: mdl-38347512

RESUMO

BACKGROUND: The culturally sensitive nursing practice has not embedded filial piety as a cultural value and stance pertaining to caregiving among aging Chinese and Chinese-American (CCA) families in the United States, yet it is critical for healthy aging among CCAs. PURPOSE: To understand filial piety when caring for aging CCAs and conceptualize an operational definition and framework. METHODS: A systematic search was conducted in CINAHL, PubMed, Scopus, and PsycINFO databases. Analysis of the concept of filial piety among CCAs used Walker and Avant's methods. Twenty-six studies were selected in the final full-text analysis. FINDINGS: Synthesis of evidence identified four antecedents: (a) filial obligation as a 'cultural gene', (b) sense of altruism, (c) familial solidarity, and (d) societal expectation of 'birth right'. Attributes included familial material and emotional support, obedience, pious reverence, and societal norms. Consequences were related to caregiver burden, psychological and physical well-being, quality of life, and health equity. CONCLUSION: Filial piety is an intrinsic desire to support aging parents and an extrinsic desire to adhere to Chinese societal moral tenets. The proposed operational framework "Caregiving for aging CCAs in the United States" merits further study.

13.
Int J Nurs Stud ; 152: 104689, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38308934

RESUMO

BACKGROUND: The Korean government has implemented a comprehensive nursing care service system (CNS) to mitigate the stress faced by caregivers. OBJECTIVE: This study aimed to assess trends in the estimated average costs of private caregiving and determine the difference in costs between those using CNS and those not using it. DESIGN: A comparative interrupted time series analysis with a 2-year lag period verified total private caregiving cost trends; biannual differences in costs were evaluated based on using CNS. PARTICIPANTS: The main unit of analysis was episode. We extracted a total of 6418 episodes of hospitalization in acute care settings that included the use of caregiving services (formal, informal caregiving and CNS). METHODS: We conducted segmented regression to assess the impact of CNS on total private caregiving costs using data from 2012 to 2018, excluding the years 2015 and 2016 of the Korean Health Panel dataset. RESULTS: We presented that the immediate mean difference in total private caregiving costs between CNS users and non-users was -444.7 USD two years after the implementation of the CNS policy (95 % CI -714.5 to -174.5, p-value 0.001). Among individuals living in rural areas, two years after the implementation of the CNS policy, there was a significant immediate mean cost difference of -476.9 USD in total private caregiving costs between CNS users and non-users (p-value 0.011). Similarly, for episodes with a Charlson Comorbidity Index (CCI) score of 0 to 1, there was a substantial immediate mean cost difference in total private caregiving costs between CNS users and non-users, amounting to -399.9 USD two years after the CNS policy (p-value 0.008). CONCLUSIONS: This study evaluated the trend of total private caregiving costs between groups using and not using CNS. After two years of being covered by CNS health insurance, those who utilized CNS paid $433 less for their total private caregiving cost over a 6-month period, compared to those who did not use CNS. The adoption of CNS may be an effective system for relieving the financial burden on inpatients in need of private caregiving services. TWEETABLE ABSTRACT: Korean Comprehensive Nursing Service reduces private caregiving costs.


Assuntos
Hospitalização , Serviços de Enfermagem , Humanos , Análise de Séries Temporais Interrompida , Cuidadores , Programas Nacionais de Saúde
14.
Demography ; 61(1): 115-140, 2024 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-38206071

RESUMO

Recent scholarship indicates that sexual minority adults have higher caregiving rates than heterosexuals and that women are more likely to be caregivers than men. However, little research has addressed how gender and sexuality intersect in shaping caregiving status. This study uses data from the Behavioral Risk Factor Surveillance System and aggregates a probability-based sample of adults living in 36 U.S. states between 2015 and 2021. We examine who provides care among adult heterosexual, lesbian, gay, and bisexual men and women. Results reveal that women are more likely to be caregivers than men, but only among heterosexuals. We find little variation in caregiving by sexuality among women, but bisexual men are more likely than heterosexual men to be caregivers; the latter result appears to be driven by unpartnered, bisexual men. Lastly, we contextualize caregivers' experiences and reveal selected descriptive differences in patterns of care recipient-caregiver relationships across gender and sexual identity groups. Our findings advance understanding of caregiving and changing family ties in an era of population aging and increasing diversity in sexual identities.


Assuntos
Características da Família , População Rural , Adulto , Masculino , Humanos , Feminino , Fatores Socioeconômicos , Heterossexualidade , Identidade de Gênero , África do Sul/epidemiologia
15.
Nihon Koshu Eisei Zasshi ; 71(5): 255-265, 2024 May 30.
Artigo em Japonês | MEDLINE | ID: mdl-38267045

RESUMO

Objectives The study aim was to explore effective measures to promote job seekers' participation in the Care Worker Initial Training course provided by Hello Work.Methods In this study, we adopted the nudge approach as a method to promote behavioral changes based on a knowledge of behavioral economics. Additionally, we tested the effectiveness of nudge-based measures compared to that of conventional measures. The survey was conducted through two rounds of Web distribution. In the first Web distribution, we consistently implemented the following, in order: 1) recruited individuals who agreed to participate in the study, 2) distributed the first Web questionnaire regarding basic attributes and eligibility criteria in terms of the target individuals, and 3) distributed course guidance. Individuals who responded to the first Web questionnaire (n=50,000) were randomly assigned to eight groups. The intervention groups were presented with course guidance based on loss-aversion nudge, empathy nudge, long-term gain nudge, and their combinations. The control group was presented with traditional course guidance used by the Ministry of Health, Labour and Welfare over the Web. Two weeks after the intervention, we identified 2,404 individuals who met the eligibility criteria and assessed their behavioral changes (pre-contemplation, contemplation/preparation, information-gathering, action); we received responses from 1,995 individuals. Binomial logistic regression analyses were performed using nudge-based interventions and behavioral change stages as dependent and independent variables, respectively. Sex, age, education level, marital status, interest in caregiving before the intervention, and behavioral change stages before the intervention were included as moderator variables.Results A total of 1,995 individuals were included in the analysis. Among the 1,756 participants in the intervention groups, 321 (18.3%) took on contemplation/preparation behavior, 102 (5.8%) took on information-gathering behavior, and 50 (2.8%) took action by participating in the course. Among the 239 individuals in the control group, 38 (15.9%) took on contemplation/preparation behavior, 31 (13.0%) took on information-gathering behavior, and 2 (0.8%) took action by participating in the course. Binomial logistic regression analyses showed that while traditional measures were effective in promoting information-gathering behavior toward participation, nudge-based measures combining loss-aversion nudge, long-term gain nudge, and empathy nudge were effective in motivating individuals to participate in the course (odds ratio: 5.39, 95%CI: 1.18-24.74, P=0.03).Conclusion The introduction of measures combining multiple types of nudges is necessary to promote participation in the Care Worker Initial Training course, rather than traditional measures or a nudge in isolation.


Assuntos
Cuidadores , Humanos , Feminino , Masculino , Inquéritos e Questionários , Adulto , Pessoa de Meia-Idade , Cuidadores/educação , Cuidadores/psicologia , Economia Comportamental
16.
Int J Qual Stud Health Well-being ; 19(1): 2296694, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38213230

RESUMO

PURPOSE: The purpose of this study was to understand the lived experiences of family caregivers who provide care to individuals across a broad range of ages, caregiving relationships, and health conditions and/or disabilities. Family caregiver research is typically siloed by health condition or by caregiving relationship, leaving gaps in understanding similarities and differences among caregivers. METHODS: We hosted three virtual focus groups with diverse family caregivers (n = 26) caring for an individual with a long-term disability and/or health condition(s). We conducted a qualitative thematic analysis using an iterative, inductive process. RESULTS: Participants primarily expressed shared experiences, despite having unique caregiving situations. We identified themes among a) caregiver experiences: Trying to Do It All, Balancing Complex Emotions, Managing Expectations, and Adjusting to Changes Over Time and b) caregiver needs: Longing for Breaks and Self-Care; Lacking Help, Support and Resources; and Desiring Understanding and Recognition. CONCLUSIONS: These findings emphasize that many elements of the caregiving experience transcend care recipient age, condition, and relationship and are applicable to clinicians, researchers, and policy makers. The evidence of shared caregiver experiences can guide efficiencies in policy and practice (e.g., pooling of existing resources, expansion of interventions) to meet the needs of a broader population of caregivers.


Assuntos
Cuidadores , Longevidade , Humanos , Cuidadores/psicologia , Família/psicologia , Emoções , Autocuidado , Pesquisa Qualitativa
17.
Rural Remote Health ; 24(1): 8244, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38233335

RESUMO

INTRODUCTION: There is a lack of information about the experiences of people living with dementia and their carers, especially in rural and regional areas. Understanding these experiences helps to identify gaps and unmet needs within the health system and improve quality of care and outcomes for people living with dementia. The aim of this study was to improve our knowledge of dementia support needs. This included access to health and social care services and supports for people living with dementia and those who provide informal or formal support to someone living with dementia. METHODS: Interviews were conducted with 26 participants from the Gippsland region of Victoria, Australia with knowledge of dementia care. Purposive sampling engaged people with lived experience, carers/family members and health professionals delivering dementia care and social services. Discussions centred around participants' experiences of support services, the diagnosis process and what they thought was needed to improve the services and supports offered. Thematic analysis of the data was undertaken using the framework method. RESULTS: The interview data indicated that the needs of many people living with dementia and their carers were not currently being met. The themes were limited access to services and supports, including primary and specialist care, often impacted by lack of knowledge of care options, difficulty navigating the system and funding models as a barrier, leading to delays in getting a diagnosis and accessing specialist services; lack of holistic care to enable people living with dementia to 'live well'; and stigma impacted by a lack of knowledge of dementia among professionals and in the community. Relationship-centred care was described as a way to improve the lives of people living with dementia. CONCLUSION: Key areas for improvement include increasing community awareness of dementia and available local services, more support to obtain an early dementia diagnosis, increased help to navigate the system, especially immediately after diagnosis, and easier access to appropriate home support services when they are needed. Other recommendations include person-centred care across settings - supported by funding models, more education and communication skills training for health professionals and care staff - and greater support for and increased recognition of carers.


Assuntos
Demência , Humanos , Demência/terapia , Cuidadores , Acessibilidade aos Serviços de Saúde , Vitória , Apoio Social
18.
Psychooncology ; 33(1): e6221, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37743780

RESUMO

OBJECTIVE: Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services. METHODS: Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission-on-Cancer-accredited cancer centers (N = 238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N = 30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence-based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis. RESULTS: Top factors for developing new caregiver programs were that the program be: consistent with the cancer center's mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). Top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy-in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards. CONCLUSION: Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence-based cancer caregiver support in U.S. cancer centers.


Assuntos
Cuidadores , Neoplasias , Humanos , Serviços de Saúde , Neoplasias/terapia , Instituições de Assistência Ambulatorial
19.
Res Aging ; 46(3-4): 197-209, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-37977132

RESUMO

Objectives: While prior research demonstrates the negative impacts of adult caregiving on women's employment, less research examines how women's employment changes when beginning a new caregiving role. Methods: Using data from eight waves of the Health and Retirement Study (2004-2018), I examine changes in women's employment when first transitioning into parental caregiving between the ages of 50-60, by analyzing changes in labor force participation, work hours, and hourly wages. Results: The transition into parental caregiving was not associated with women exiting the workforce or decreasing their work hours. However, caregivers did experience a decrease in inflation-adjusted hourly wages compared to non-caregivers, with the greatest wage penalties associated with high-intensity caregiving situations. Conclusion: Results demonstrate how parental caregiving may act as a shock to women's financial health at a critical career stage. This study highlights the less visible, but detrimental, financial consequences women experience when taking on a family caregiving role.


Assuntos
Cuidadores , Classe Social , Feminino , Humanos , Fatores Socioeconômicos , Escolaridade , Salários e Benefícios , Pais , Envelhecimento
20.
Gerontologist ; 64(5)2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-37878811

RESUMO

BACKGROUND AND OBJECTIVES: Latinos caring for a person with Alzheimer's disease and related dementias (ADRD) have the highest prevalence of caregiving. Yet, they are less likely to benefit from evidence-based interventions given their continued underrepresentation in ADRD-related research. Community advisory boards (CABs) have the potential to address barriers to research for underrepresented communities; however, there are complexities to establishing and sustaining CABs. This article describes how our work addressed challenges in CABs related to unbalanced power relations, language barriers, the value of time, and low research knowledge and health literacy. RESEARCH DESIGN AND METHODS: Nine Latino CAB members, including older Latino caregivers, were trained in a comprehensive program designed to increase knowledge about health research methods and ethics, cognitive health, and cultural adaptation methods. Members completed pre- and post-training measures of Alzheimer's disease knowledge, attitudes, and beliefs toward research, and a satisfaction survey. RESULTS: Results from the satisfaction questionnaire indicated that the program was well received. CAB members increased their knowledge regarding the management of behavioral and psychological symptoms of dementia and dementia-associated risk factors and treatment. Positive changes in members' attitudes toward research included increased willingness to participate in trials and subject protection measures. DISCUSSION AND IMPLICATIONS: Formalized training in research conduct and ethics and health literacy is a promising strategy to reduce challenges in establishing and maintaining CABs and can also optimize CAB impact to address gaps in older Latino ADRD caregiving research.


Assuntos
Doença de Alzheimer , Humanos , Idoso , Doença de Alzheimer/psicologia , Cuidadores/psicologia , Barreiras de Comunicação , Ética em Pesquisa , Hispânico ou Latino/psicologia
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