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Objectives: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers.Method: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care: WS1: Recruitment and follow-up of the DETERMIND cohort-900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years. WS2: Investigation of the extent of inequalities in access to dementia care. WS3: Relationship between use and costs of services and outcomes. WS4: Experiences of self-funders of care. WS5: Decision-making processes for people with dementia and carers. WS6: Effect of diagnostic stage and services on outcomes. WS7: Theory of Change informed strategy and actions for applying the research findings.Outcomes: During the life of the programme, analysing baseline results and then follow-up of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia. [ABSTRACT FROM AUTHOR]

Research affirms that survivors of post-traumatic stress disorder (PTSD) experience psychological distress that affects their romantic partners, and that a bi-directional effect between PTSD symptoms and romantic relationship satisfaction exists, indicating that improvements in the romantic relationship may lead to the improved well-being of the survivor. Indeed, as romantic partners of PTSD survivors are both negatively impacted by the distress of the survivor, and romantic relationship satisfaction can affect the distress of the PTSD survivor, partners are a key stakeholder for mental health. Unfortunately, theoretical models have not adequately captured the experience of this population to properly illuminate their experience and provide appropriate treatment directives. This paper examines the informal caregiving integrative model to determine its applicability to the romantic partners of PTSD survivors with respect to the determinants, mediators, and outcomes. The current literature on romantic partners is used to evaluate the adequacy of fit, as well as to provide the components unique to partners. Future directions, clinical implications, and limitations of current research are explored based on the results of this review. [ABSTRACT FROM AUTHOR]

In 2004, California became the first state to require that employers provide paid family leave (PFL) to their employees. This paper examines the effect of California's PFL law on time spent caregiving to parents and to grandchildren by older adults aged 50–79. To identify the effect of the law, the paper uses the 1998–2016 waves of the Health and Retirement Study and a difference-in-differences approach comparing outcomes in California to other states before and after the implementation of the law. Results suggest that the law induced a switch in caregiving behavior with older adults spending less time caring for grandchildren and more time helping parents. Focusing on women, results further suggest that PFL affected older adults both through their own leave-taking and through reallocations of their caregiving time in response to leave-taking by new parents. The findings motivate thinking more broadly when calculating the costs and benefits of PFL policies; to the extent that California's PFL law enabled older adults to provide more care for their parents they otherwise would not have received, such an outcome represents an indirect benefit of the policy. [ABSTRACT FROM AUTHOR]

Background: The coronavirus disease 2019 (COVID‐19) has adversely affected intensive care nurses; for instance, they have fought against an unknown disease, and their workload has increased. In addition, the COVID‐19 pandemic has led intensive care nurses to work in new settings and with new teams. Objective: The aim of this study was to explore and describe the caregiving experiences of nurses who were working in a new COVID‐19 intensive care unit in Turkey and providing care for patients infected with SARS‐CoV‐2. Method: In this descriptive qualitative study, semi‐structured interviews were held from 22 July to 31 August 2020 and were recorded and analysed based on thematic analysis. The researchers followed the COREQ checklist in reporting the study. Findings: From interviews held with 11 nurses, four main themes (uncertainty and challenges in the 'danger zone', emotional and psychosocial changes, professional effects of the pandemic and being ready for a future pandemic) were derived from 11 sub‐themes. Conclusions: The new setting and the ever‐changing team make caring for the COVID‐19 patient even more difficult. A good organization, an experienced permanent team, a known setting and good working conditions are essential to be prepared for possible pandemics in the future. Summary statement: What is already known about this topic? Pandemics are emergencies that can lead the health system to collapse.Patient care quality is associated with nurses' knowledge and experience.The COVID‐19 pandemic has led intensive care nurses to work in new settings and with new teams. What this paper adds? Nurses described challenges such as the fear, stress and stigma they experienced in the ICU during the first wave of the pandemic, which negatively affected patient care.The new setting and the ever‐changing team make caring for the COVID‐19 patient even more difficult. The implications of this paper: A good organization and an experienced permanent team should be established in order to ensure patient safety and high‐quality care in ICU settings for COVID‐19 patients.Working conditions of nurses should be improved without changing their setting during the pandemic. [ABSTRACT FROM AUTHOR]

Objectives: This paper aimed to review and synthesise the qualitative research evidence on the experiences and perceptions of dementia in Vietnam and among the Vietnamese diaspora. Methods: Systematic searches were conducted in June 2019 using Medline, Embase, Emcare, PsycINFO and Cochrane electronic databases, as well as grey literature. Keywords and Medical Subject Headings [MeSH terms] for dementia and associated terms were combined with keywords for Vietnam and its provinces. Qualitative research articles published in English or Vietnamese were included to examine evidence on the life experiences of Vietnamese people with dementia using thematic analysis. Results: Our searches resulted in 3,940 papers, from which 21 qualitative research studies were included for final analysis. The majority of research has not been undertaken in Vietnam but with the Vietnamese diaspora in Western countries and has taken a cultural perspective to analyses. Research in Western countries has focused on the need for culturally adapted and culturally sensitive models of care. Emerging themes about the life experiences of Vietnamese people with dementia identified from the studies included: many people do not have diagnostic terms for dementia but use the descriptive language of symptoms; stigma was a reported problem and on occasions can be observed in the descriptive language used for people with dementia; cultural and traditional values create both an opportunity and a barrier, supporting compassion, family care and relaxation, but creating barriers to accessing health services or long-term residential care. Conclusions: This is the first systematic review reporting qualitative evidence on the life experiences of people with dementia in Vietnam and among the Vietnamese diaspora. Future research is needed on the voice of people with dementia themselves and their caregivers particularly in Vietnam, and low and middle-income countries with regards to living with dementia, pathways to care from diagnosis, treatment, care and support, additional social care and preparedness for end of life care for people with dementia. [ABSTRACT FROM AUTHOR]

Background: Two out of three family caregivers are female. However, current trends show that men are more likely to undertake caregiving duties, yet female caregivers report a higher burden. This paper analyzed data from long-term family caregivers to determine whether, under similar circumstances, gender differences in caregiving persist. We examined whether the observed gender gap affects caregivers' satisfaction with their health and quality of life. Methods: We analyze cross-sectional data from family caregivers of persons with spinal cord injury (SCI) in Switzerland. The data provides comprehensive information about the time and type of weekly tasks family caregivers undertake. To determine differences in caregiving related to gender, we balanced the characteristics of the caregiver and the cared-for person using a propensity score kernel matching. With the balanced sample, we estimated how the observed differences in caregiving varied across cohorts using a Poisson regression. Results: Under similar circumstances, male and female caregivers invest similar time in caregiving. This result holds for 21 caregiving tasks, except for household chores, where women spent, on average, four more hours per week than male caregivers. Despite these differences, female caregivers report a quality of life and satisfaction with their health that is similar to that of male caregivers. Conclusion: Gender differences in caregiving narrow over time, except for household chores, where female caregivers continue to spend significantly more hours than male caregivers. Measures designed for family caregivers must consider these gender differences, as the support needs of female caregivers can differ greatly from those of male caregivers. [ABSTRACT FROM AUTHOR]

Background: There is a need for improved access to evidence-based interventions supporting the wellbeing of caregivers of adults with acquired brain injury (ABI). Remotely delivered interventions could address this need. The present systematic review sought to collate studies evaluating remotely delivered interventions designed to improve the wellbeing of caregivers of adults with an ABI, to summarise findings and to comment on the quality of this research. Methods: Systematic searches were conducted up until December 2023. Study characteristics, populations, interventions and outcomes were outlined, and papers were appraised on methodological quality. The review was pre-registered (PROSPERO: CRD42020189235). Results: Eleven studies meeting inclusion criteria were identified. Methodological quality was generally low to adequate. Most studies evaluated an intervention for caregivers of people with stroke, with a variety of types of interventions trialled. The majority of studies reported non-significant findings on wellbeing outcomes when compared to control conditions. Conclusions: There is limited evidence supporting a remotely delivered intervention to improve wellbeing outcomes for ABI caregivers. Specific recommendations are provided, including the development of a core set of outcomes and replication of findings over time, which can improve research into the development and evaluation of remote interventions for this population. Caring for someone with an acquired brain injury can impact negatively on wellbeing, and caregivers face a range of barriers to access services. This systematic review explored the evidence-base for supporting the psychological wellbeing of caregivers remotely. The literature was searched, and studies were summarised and evaluated on methodological quality. Eleven studies were found. In summary, there is currently little evidence supporting remote delivery to improve psychological wellbeing for this group. Recommendations for future research and intervention development are provided. [ABSTRACT FROM AUTHOR]

Critical realism is a framework that explains causations of observable events. It is useful in exploring and explaining complex nursing phenomena. It is grounded in the stratification of reality and the understanding that the world is complex, open, and has interactions that support or cancel each other whether we observe it or not. It can be used as a theoretical foundation of case study approach, an in-depth inquiry that seeks to understand a particular phenomenon within specific settings. This paper introduces the basic concepts of critical realism and how it can inform a qualitative case study methodology. To support this approach, we present a study on caregiving experiences for older people with dementia from culturally and linguistically diverse backgrounds which we believe highlights the value of combining critical realism and case study to inform future nursing research. [ABSTRACT FROM AUTHOR]

This article focuses on the archive of the Washington Female Orphan Asylum, founded in 1815, and places the study of philanthropy in conversation with scholarship on the archive in histories of slavery, colonization, and trauma. It argues, first, that philanthropic and reform institutions such as the asylum were domestic sites of empire and that their archives reveal the reach of statecraft into the intimate lives of women and families. The article explores, second, the role of emotion in archival research, which can highlight an archive's construction and its silences. The relinquishments within the asylum's records provoke emotion; as fragmentary evidence, they testify to trauma and demand the historian's care. [ABSTRACT FROM AUTHOR]

Background: The paper aims to explore the elderly caregiving process in India from the perspective of both elderly as well as working women care providers, along with the challenges faced and the coping strategies adopted by them during the process. Methods: In-depth interviews with 48 participants (care providers and care receivers) from 25 multi-generational households were conducted in the slums of Mumbai and analysed using QSR-NVivo-10. Results: Working women care providers supported the needs of the dependent elderly along with performing household chores and paid work. However, the way the care was perceived and demanded, was not often same as delivered by the care providers. Care provider suffered silently with poor social, physical and emotional welling in absence of support system and lack of time. Sometimes, physically exhausted care providers unknowingly resorted to elderly abuse and neglect. At the same time, a bidirectional flow of support from elderly also existed in the form of childcare, household chores and financial support. Though caregiving overstrained the care providers, strong family ties, acknowledgement of the contributions of the elderly during their young days, and the desire to set a precedent for the young generation did not let them step back from their duties. The main coping mechanism for both care receivers and providers was largely centred around the notion of acceptance of their situation. Conclusion: Conversations between generations can help in enhancing family ties and reduce conflicts. The support of family and community can also ease the burden of caregiving. [ABSTRACT FROM AUTHOR]

This paper groups persons who have transitioned into family caregiving using a latent class analysis and examines class differences on measures of well-being. Latent classes were identified for a sample of 251 participants who became family caregivers while participating in a longitudinal national study, and linear regression analyses compared average well-being change scores across classes. Fit indices supported a four-class solution dispersed along two conceptual dimensions: caregiving intensity and caregiving stain. The largest class (35.5%) was characterized as low intensity, low strain. The smallest class (12.7%) was characterized as high intensity, high strain, and these caregivers had significantly worse well-being change scores compared to the other caregiving classes. Categorizing caregivers by differing levels of care intensity and caregiving strain helps identify caregivers who are at most risk for poor psychosocial outcomes, determines which caregivers might benefit from specific caregiver support programs, and informs investigators on possible refinements to interventions. [ABSTRACT FROM AUTHOR]

Aims: To critically synthesize the empirical literature on practice in transitional care and how to meet the care needs of older ethnic minority populations who discharged from hospital to community. Design: An integrative literature review integrating empirical studies using the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. Data Sources: PubMed, Web of Science, PsycINFO, EBSCO (including CINAHL and MEDLINE) and Scopus were searched for papers published between 2012 and September 2022. Review Methods: Full‐text papers were screened against inclusion and exclusion criteria subsequent to screening titles and abstracts. All included papers were evaluated for methodological quality using the Critical Appraisal Skills Programme Checklists. After extracting findings, themes were created by critically examining and synthesizing of findings. Results: The search yielded a total of 1180 studies, 1153 after removing duplicates and 27 papers meeting the inclusion criteria and exclusion criteria were included in the review. The main findings were categorized into four themes: (i) intervention‐related outcomes; (ii) unmet needs of older minority people; (iii) transitional care–related characteristics of older minority people and (iv) challenges for healthcare providers. Findings indicated that the transitional care experience of ethnic minority older populations differed from natives to some extent which revealed unmet needs addressing how to provide culturally appropriate transitional care for this population. Conclusion: This review gave insight into facilitators in the transitional care of ethnic minority older adults. Future transitional care interventions should incorporate needs of ethnic minority population. Impact: This review highlighted the defined gaps between existing transitional care programmes and transitional care needs of older ethnic minority. Increasing follow‐up completion, evidence defining deeply of ethnic phenomenon in the transitional care process, developing interventions that meet transitional care needs and increasing healthcare providers' cultural competency were featured headlines. No Patient or Public Contribution. [ABSTRACT FROM AUTHOR]

New technologies can help older persons age in place and support their caregivers. However, they need to be accepted by the end-users to do so. Technology acceptance models, such as TAM and UTAUT and their extensions, use factors like performance expectancy and effort expectancy to explain acceptance. Furthermore, they are based on quantitative methods. Our qualitative study investigates factors fostering and hindering acceptance among older persons and their caregivers for a variety of assistive technologies, including wearables, ambient sensors at home with and without cameras and social companion robots. The goal of this paper is twofold: On the one hand, it investigates the factors of technology acceptance models in a qualitative setting. On the other hand, it informs these models with aspects currently overlooked by them. The results reveal that performance expectancy and effort expectancy are relevant for acceptance. We also find that reliability, anxiety around technology and different social aspects have an influence on acceptance of assistive technology in aged care for all end-user groups. Our findings can be used to update current technology acceptance models and provide in-depth knowledge about the currently used factors. [ABSTRACT FROM AUTHOR]

As Singapore confronts escalating demands for eldercare labour in the face of rapid ageing, families are increasingly resorting to market-based, gender-normative options predicated on the care-chain migration of women to resolve familial care deficits. At the same time, given the prevalence of discourses of Asian familialism, the abdication of eldercare responsibilities to non-familial caregivers whose labour is purchased through market transactions often raises social anxieties decrying the decline of filial piety. This paper explores the way eldercare work is choreographed around gendered performances of intimate labour by different household members as families work through market solutions and moral dilemmas around eldercare. Following conceptualisation of the intimate that configure it along lines of mobility, emotion, materiality, belonging, alienation, we use the term intimate labour to refer to work involving embodied interactions that shape the social reproduction of everyday life. The paper is based on in-depth interviews with 34 elderly persons 'cared for' by foreign domestic workers and 35 foreign domestic workers employed to 'care for' the elderly. First, we examine the way families articulate the care logics behind the everyday division of intimate labour between live-in foreign domestic workers and spatially proximate family caregivers. Second, we show how the daily choreography of intimate labour and exchange among different household members folds into reshaping and relativizing affinal connections between 'carer' and 'cared-for' in the global household. Ultimately, we argue that home-based eldercare serve to rigidify the gendered contours of the 'woman-carer model' of care. [ABSTRACT FROM AUTHOR]

Identifying the correlates of out-of-pocket (OOP) health care spending is an important step for ensuring the financial security of older adults. Whether or not someone has a family member providing assistance is one such factor that could be associated with OOP spending. If family caregivers facilitate better health, health care spending could be reduced. On the other hand, costs would be higher if family members facilitate more (or more costly) care for loved ones. This paper explores the relationship between caregiving arrangements and OOP spending using data from 5045 individuals in the 2000–2016 Health and Retirement Study with Medicare coverage and caregiving needs. We do not find a relationship between family caregiving and OOP health care costs, overall. However, among those with Medicare HMO insurance, having a family caregiver is associated with more spending than having no helper. This is mainly due to differences in spending on prescription medications. [ABSTRACT FROM AUTHOR]

Informal carers play a vital part to ensuring that individuals in need of care, due to illness or disability, continue to experience a good quality of life. Care provision has been studied extensively, however, little is known about the associations of discontinuing care. This knowledge is important not only to ensure that informal carers are supported, even after caring episode, but also to ensure the care‐recipients are not left without support. By conducting longitudinal analysis of the English Longitudinal Study of Ageing (ELSA), this paper uniquely starts to unveil the associations of discontinuing the caring role and the patterns of care provision prior to discontinuing. A multivariable binary regression analysis was conducted of the ELSA waves 7 (2015) to 8 (2017), total sample size of N = 6,687. 10.5% (n = 701) respondents were identified as discontinued carers. The dependent variable was care provided in wave 7 but not in wave 8 (a discontinued carer), compared to providing care in both waves (a continuing carer). Socio‐demographic, such as age, gender, marital status, economic activity and health acted and caring patterns, such as intensity and relationship with care‐recipient, acted as independent variables. Results showed nearly 30% of discontinued carers had provided care to a spouse. Nearly a quarter of continuing carers had transitioned between care‐recipients, which raises the question of a potential 'Serial Carer Trajectory'. The regression analysis noted that being divorced or widowed increased the odds of discontinuing care. Providing 20–49 hr of care per week was associated with lower odds of discontinuing the role. This paper suggests that policymakers should take a holistic approach to policies to support carers through all stages of their caring journey, including after discontinuing the caring role. This could ensure carers settle into life post‐caring and continue to feel valued and recognised. [ABSTRACT FROM AUTHOR]

Policies and services to support informal caregivers vary considerably across countries, This paper examines the role of caregivers and how perspectives on that role may influence the availability of benefits and services in three countries that differ considerably in their care systems - Sweden, Ireland and the United States. We developed a nine-dimensional framework for examining differences, including policies and how the role of caregiver is conceptualized. We found differences in the three countries in how services are organized, which reflected assumptions about the caregiver role. There were also similarities in the three countries. Caregivers held an ambiguous position within each social system and there was little concern for equity in the delivery of support services. Increased clarity about the role of caregivers may facilitate development of policies that more effectively meet their varied needs. [ABSTRACT FROM AUTHOR]

This paper presents findings from a qualitative study conducted in Ontario, Canada, exploring healthcare professionals' perceptions of barriers and solutions for implementing Web-Based Reminiscence Therapy (WBRT) in an institutionalized settings for dementia care during the COVID-19 pandemic. The study identified five major barriers, including the lack of on-boarding/educational training, need for technology availability and technical support, limited attention span of persons with dementia (PWD), availability of multi-sensory features, and time constraints due to staff workload. Seven major themes emerged related to proposed solutions/suggestions: (1) involving younger generations, (2) focusing on technology training, (3) integrating with other digital platforms, (4) adding narratives/descriptions to recollect memories, (5) ensuring accessibility, (6) adding QR codes for retrieving information, and (7) combining digital/traditional reminiscence methods. These findings provide valuable insights for implementing WBRT to facilitate dementia care and for the future refinement of its application. [ABSTRACT FROM AUTHOR]

Little is known about the decision-making processes around seeking more supportive care for dementia. Persons with dementia are often left out of decision-making regarding seeking more supportive care as their dementia progresses. This paper provides a description of findings from the Decision-making in Alzheimer's Research project (DMAR) investigating the process of decision-making about transitions to more supportive care. We conducted 61 qualitative interviews with two stakeholder groups: 24 persons with dementia, and 37 informal caregivers to explore supportive care decisions and associated decision-making factors from the perspectives of persons with dementia and their caregivers. We identified four main decisions that persons with dementia and their informal caregivers played a role in: (1) sharing household responsibilities; (2) limiting routine daily activities; (3) bringing in formal support; and (4) moving to a care facility. Based on our findings we developed a schematized roadmap of decision-making that we used to guide the discussion of our findings. Four crosscutting themes emerged from our analysis: unknowns and uncertainties, maintaining life as you know it, there's no place like home and resource constraints. These results will be incorporated into the development of instruments whose goal is to identify preferences of persons with dementia and their caregivers, in order to include persons with dementia in care decisions even as their dementia progresses. [ABSTRACT FROM AUTHOR]

Purpose: The Adult Social Care Outcomes Toolkit for informal carers (ASCOT-Carer) can be used to assess long-term care-related quality of life (LTC-QoL) of adult informal carers of persons using LTC services. The ASCOT-Carer instrument has been translated into several languages, but preference weights reflecting the relative importance of different outcome states are only available for England so far. In this paper, we estimated preference weights for the German version of the ASCOT-Carer for Austria and investigated the value people place on different QoL-outcome states. Methods: We used data from a best–worst scaling (BWS) experiment and estimated a scale-adjusted multinomial logit (S-MNL) model to elicit preference weights for the ASCOT-Carer domain-levels. Data were collected using an online survey of the Austrian general population (n = 1001). Results: Top levels in the domains of 'Space and time to be yourself', 'Occupation' and 'Control over daily life' were perceived as providing the highest utility, and states with high needs in the same domains seen as particularly undesirable. 'Personal safety' was the only domain where levels were roughly equidistant. In all other domains, the difference between the top two levels ('ideal state' and 'no needs') was very small. Conclusion: The paper provides preference weights for the German version of ASCOT-Carer to be used in Austrian populations. Furthermore, the results give insight into which LTC-QoL-outcomes are seen as particularly (un)desirable, and may therefore help to better tailor services directed at informal carers and the persons they care for. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to develop and initially assess the psychometric properties of the Caregiver Caregiving Self‐Efficacy Scale—Oral Cancer (CSES‐OC). Methods: In total, 28 items in the Caregiver Caregiving Self‐Efficacy Scale—Oral Cancer were originally employed for a reliability and validity test based on expert suggestions and qualitative findings. The Cronbach's alpha coefficient and test–retest reliability were evaluated with the pilot sample, which included 30 caregivers. The main test, which included 107 caregivers during May 2016 to 2018, was used to execute the exploratory factor analysis (EFA) and concurrent validity. Results: The results of the main test showed a Cronbach's alpha coefficient of.95 for the revised 18‐item total scale after EFA. Four factors (acquiring resources, managing sudden and uncertain patient conditions, managing patient‐related nutritional issues and exploring and making decisions on patient care) were classified from EFA of the Caregiver Caregiving Self‐Efficacy Scale—Oral Cancer. The r coefficient was.59 (P <.01), which supported the concurrent validity between CSES‐OC and General Self‐Efficacy Scale. Conclusion: The study results show appropriate psychometric properties for the Caregiver Caregiving Self‐Efficacy Scale—Oral Cancer that was constructed for evaluating caregiver caregiving self‐efficacy in caring for family members with oral cancer. Summary statement: What is already known about this topic? It is important to evaluate the caregivers' positive belief in their family members care abilities if they are to accomplish the tasks required of them when faced various difficulties at home.There is no instrument that measured perceived caregiving self‐efficacy in caregiver in caring for a sick family member with oral cancer. What this paper adds? Cronbach's alpha coefficient, test–retest reliability, exploratory factor analysis and concurrent validity supported the psychometric properties of Caregiver Caregiving Self‐Efficacy Scale—Oral Cancer.This Caregiver Caregiving Self‐Efficacy Scale—Oral Cancer contains four dimensions: acquiring resources, managing sudden and uncertain patient conditions, managing patient‐related nutritional issues and exploring and making decisions on patient care. The implications of this paper: Caregiver Caregiving Self‐Efficacy Scale is appropriate to appraise the caregivers' competence beliefs relevant to caregiving at home. [ABSTRACT FROM AUTHOR]

AbstractObjectivesMethodResultsConclusionThe objective of this paper is to explore how telephone-delivered mindfulness training impacts family conflict and communication within the informal dementia caregiving team, including primary caregivers, their care partner, and the care recipient.Primary caregivers and their care partners participated in an eight-week telephone-delivered mindfulness-based intervention (MBI). This study used mixed methods and a pre-post design to evaluate the intervention’s effect on family satisfaction, perceived support, and family conflict.Both family satisfaction and perceived informational support increased significantly, and qualitative analysis revealed four key themes illustrating how the mindfulness intervention served to positively impact family conflict and communication among participating caregivers.This study provides preliminary evidence for the beneficial effects of an MBI on family functioning among rural African American caregivers of people with Alzheimer’s disease and related dementias. [ABSTRACT FROM AUTHOR]

Background and Objectives Amyloid positron emission tomography scans can enhance the accuracy of dementia diagnoses. However, the perspectives and experiences of people with cognitive impairment and their care partners undergoing an amyloid scan are less well understood. Therefore, this review aimed to identify and summarize qualitative studies exploring patient and care partner experiences of undergoing an amyloid scan. Research Design and Methods We searched Embase, MEDLINE, and PsychInfo in March 2024. Articles were screened for inclusion by 2 reviewers and critically appraised using the Joanna Briggs Institute Critical Appraisal Tool for Qualitative Studies. Data from the included studies were synthesized using thematic synthesis. Results We identified 10 papers from 6 studies. We identified 4 themes: (1) motivations for undergoing an amyloid scan, (2) experiences of receiving the result, (3) emotional responses to the result, and (4) actions in light of the scan result. Participants reported undergoing the scan to determine the cause of cognitive impairment. They described the information gained from the scan as helpful but struggled to recall the correct terminology or implications of the scan. Emotional responses to the scan varied depending on the scan result. In light of the scan result, the most common action was making advanced plans; however, this was mainly discussed among participants with elevated amyloid. Discussions and Implications Amyloid scans can provide useful and actionable information. However, learning the scan result could be distressing. Future research is needed to balance the potential benefits and harms of amyloid scans. [ABSTRACT FROM AUTHOR]

Background: People with post‐stroke dysphagia often require informal care from family to facilitate safe swallowing, modify food/drink or administer tube‐feeds. Previous survey studies have found dysphagia may increase family caregiver burden. However, the experiences of family members in this population have not been fully explored. Aims: To explore family members' experiences of living with a spouse with post‐stroke dysphagia. Methods & Procedures: This exploratory qualitative study used one‐to‐one semi‐structured interviews to explore family members' experiences. They were asked open questions about previous eating routines, dysphagia onset, their role and future hopes. Interviews were audio‐recorded, transcribed and analysed thematically with an inductive approach to determine key features of family members' experiences. Outcomes & Results: Five spouses aged 70–93 years participated. Their relatives' strokes happened 3 months to 3 years before the interview. Five themes were identified: 'I do all of it'; making sense of dysphagia; emotional responses; reflecting on relationships; and redefining lifestyle. Conclusions & Implications: It is important to consider family members' perspectives as they often provide vital care to loved‐ones with dysphagia. In relation to eating and drinking, maintaining elements of previous routines seems important to families. Healthcare professionals should consider these when making recommendations for rehabilitation. Family members have differing perspectives of the comparative impact of dysphagia; patient and family priorities should be explored for healthcare professionals to provide better‐targeted support. What this paper adds: What is already known on the subject: Informal caregivers, often spouses, play a vital role in supporting the health and well‐being of older people with health conditions. The presence of post‐stroke dysphagia may present increased challenges for the informal caregiver. There are limited studies qualitatively exploring the experiences of informal caregivers in this population. What this paper adds to existing knowledge: Current health and social care provision for this population leaves informal caregivers feeling they have been left to manage dysphagia alone. Informal caregivers demonstrate a breadth of knowledge about their spouse's dysphagia, problem‐solving effective solutions. Informal caregivers have a range of interpretations of the nature and cause of dysphagia; leading to miscommunication with health professionals and complex emotional responses. What are the potential or actual clinical implications of this work?: Healthcare professionals might consider ways in which to support dysphagic patients' families later in their care pathway, through scheduling reviews or running dysphagia patient and family groups. Health and social care professionals and policymakers should learn from informal caregivers' expertise to promote better health and quality‐of‐life outcomes for the patient and caregiver. Equal, open conversations between health and social care professionals and patients/families on their understanding of dysphagia may help informal caregivers to better voice their concerns and support mutual understanding. This has implications for adherence to recommendations, psychological well‐being and patient safety. [ABSTRACT FROM AUTHOR]

Being an informal caregiver to a loved one with an illness, disease, or chronic disability is a rewarding but frequently stressful experience. In this design research project, caregivers participated in a half-day workshop to (1) share their caregiving experience, (2) reflect on the potential of a mobile smartphone 'app' for carers and (3) co-design this app, as well as in-depth interviews. Our design research process used multiple arts-based methods, including visual experience mapping tools, storytelling, photo-elicitation, documentary photography, cartoons, drawing, and research poetry, to provide rich and empathic insight into daily life as a caregiver and illuminate the potential of technology. Workshop activities included creating a visual collage of lived experience, annotated visual maps illustrating the reality and misconceptions of caregiving, pathways of care, and mapping a day in their life using the visual metaphor of a clock. Carers then trialled and provided feedback on a prototype app, creating a collective map of desired features. This co-design feedback informed the final app design, which was formally launched at a public exhibition showcasing stories collected from our arts and design-led processes. This paper outlines the value of arts and design methods in the design of future health technologies, which provide a critical space for an informed, reflexive, and empathic dialogue about illness and caregiving, resulting in designs that truly met consumer's needs. [ABSTRACT FROM AUTHOR]

Young carers support family members affected by disability or a health condition. The Young Carer Bursary Program aims to support young carers' education. This paper analysed data from consenting bursary applicants (2017–2019) to investigate relationships between wellbeing, educational attendance, home study and other factors. Descriptive statistics, correlation and regression analysis determined significant issues, relationships and influential factors related to young carer (N = 1,443) wellbeing and education. Sixty‐eight percent were aged between 13 and 18 years and attended secondary school. One third of the sample reported that they were the main carer in their family and 29% reported receiving no support. Female applicants from single parent households who were the main carer attended educational settings less often. Eighteen percent (n = 267) rated their wellbeing as poor/very poor. Better wellbeing was associated with increased educational attendance (rs = 0.33, p < 0.001) and home study (rs = 0.34, p < 0.001). Wellbeing was associated with main carer status, caring for a parent, having a disability, being older and having few supports. Educational attendance was associated with main carer status, higher care load and fewer supports. Home study was associated with having a disability, caring for a sibling, caring for more than 11 hr per week and having fewer supports. Important factors about the age, life situation and challenges experienced by young carers identified in this paper indicate that further research into preferred supports and effectiveness of the bursary in improving educational engagement is warranted. [ABSTRACT FROM AUTHOR]

This article shows how, within a caregivers' self-help group in Emilia-Romagna, Italy, the narrative of caring fatigue was mobilised to question and negotiate local normative discourses and social norms on affective states and family care responsibilities. The neoliberal discourse on family caregiving in Italy assumes that it comes from authentic affective states and mutual understanding. By showing how intergenerational obligations and shifting parent-child hierarchies constrained the building up of caregiving relations, the narrative of caring fatigue allowed participants to explain the ambivalence they perceived about their filial responsibilities. Therefore, this narrative legitimised the choice of preserving caregivers' wellbeing and delegating aspects of care. This paper argues that stories of caring fatigue contradict the ideal model of family care that shapes academic and institutional discourses. Nevertheless, they play an important role in sustaining caregiver endurance. [ABSTRACT FROM AUTHOR]

Background and Objective Care partners of people living with dementia require support to knowledgeably navigate decision making about how and when to use monitoring technologies for care purposes. We conducted a pilot study of a novel self-administered intervention, "Let's Talk Tech," for people living with mild dementia and their care partners. This paper presents preliminary efficacy findings of this intervention designed to educate and facilitate dyadic communication about a range of technologies used in dementia care and to document the preferences of the person living with dementia. It is the first-of-its-kind decision-making and planning tool with a specific focus on technology use. Research Design and Methods We used a 1-group pretest–post-test design and paired t tests to assess change over 2 time periods in measures of technology comprehension, care partner knowledge of the participant living with mild Alzheimer's disease's (AD) preferences, care partner preparedness to make decisions about technology use, and mutual understanding. Thematic analysis was conducted on postintervention interview transcripts to elucidate mechanisms and experiences with Let's Talk Tech. Results Twenty-nine mild AD dementia care dyads who live together completed the study. There was statistically significant improvement with medium and large effect sizes on outcome measures of care partners' understanding of each technology, care partners' perceptions of the person living with dementia's understanding of each technology, knowledge of the person living with dementia's preferences, decision-making preparedness, and care partners' feelings of mutual understanding. Participants reported that it helped them have important and meaningful conversations about using technology. Discussion and Implications Let's Talk Tech demonstrated promising preliminary efficacy on targeted measures that can lead to informed, shared decision making about technologies used in dementia care. Future studies should assess efficacy with larger samples and more diverse sample populations in terms of race, ethnicity, and dementia type. [ABSTRACT FROM AUTHOR]

Background: Dementia can impede the relationship and connection between the person with dementia (PWD) and their caregiver. Yet, caregiving in dementia also offers opportunities for connection, which has implications for caregiver and PWD well‐being. In this qualitative study, we describe and characterize ways caregivers felt connected to the person with dementia they care for. Methods: We conducted a telephone‐based survey with caregivers of people with dementia. For this paper, we analyzed responses to an open‐ended question focused on when caregivers feel most connected to the person they are caring for. Responses were analyzed and coded and themes were identified through an iterative process involving a multidisciplinary team of researchers and clinicians. Results: 437 caregivers participated in this study. We identified two domains of connection: activity‐based and emotion‐based connections. Within activity‐based connections, the following themes emerged: everyday activities; reminiscing; activities of caregiving; novel experiences; and time with family and friends. Within emotional connections, the following themes emerged: expressions of love, appreciation, and gratitude; physical affection; sharing an emotion or emotional experience; and times when the PWD seems like "themself" again. Conclusions: Findings provide insights into ways caregivers experience a sense of connection with the person they care for. There is a call to shift away from focusing on reducing stress and toward optimizing positive experiences as a way to better support caregivers' health and well‐being. Interventions that leverage these insights to foster caregiver – PWD connection could lead to better health and well‐being for both members of the dyad. The amplification of a positive experience may be particularly important for caregivers who are struggling with limited support or respite. Clinicians may be interested in using a question about connection as a way to more fully understand a caregiver's current experience. See related Editorial by Monin et al. in this issue. [ABSTRACT FROM AUTHOR]

In July 2019, Ebola in the Democratic Republic of Congo (DRC) was declared a public health emergency of international concern and neighbouring countries were put on high alert. This paper examines the intersections of gender, caregiving, and livelihood practices in Uganda's border districts that emerged as key factors to consider in preparedness and response. This paper is based on an anthropological study of the Ebola context among Bantu cultures. We report on data from focus group discussions and key informant interviews with various sectors of the community. The study identified intersecting themes reported here: (1) women as primary caregivers in this context; and (2) women as providers, often in occupations that increase vulnerability to Ebola. Findings demonstrate the role that women play inside and outside the home as caregivers of the sick and during burials, and intersections with livelihood-seeking strategies. Because women's caregiving is largely unpaid, women face a double burden of work as they seek other livelihood strategies that sometimes increase vulnerability to Ebola. Epidemic response should address these intersections and the context-specific vulnerabilities of caregivers; it should also be localised and community-centred and able to attend to the cultural as well as the economic needs of a community. [ABSTRACT FROM AUTHOR]

Almost a quarter (23.9%) of Indigenous Australians report living with a disability. While most of them are cared for at home by female family members, there is limited understanding and insight into their lives. There is even less known about Indigenous primary carers who often also live with a disability and/or serious health condition requiring ongoing medical healthcare and support. This paper explicitly explores Indigenous disabled carer experiences who are navigating complex infrastructures of social protection for those that they care for and to gain support for their own health and disability needs as a disabled carer. The paper illustrates the significant disadvantages they experience given their regional locations of residency and the historicity of disability-carer support availability. Drawing upon their narratives from semi-structured interviews and yarning circles, three significant themes emerge: (i) Extended carer responsibilities for the family, (ii) Challenges applying for and receiving financial support as carers to support their own wellbeing as a disabled person and the disabled family member they cared for, (iii) Living in unsuitable accommodation. [ABSTRACT FROM AUTHOR]

All over Europe, the question of sustainable care for the older people gains attention. Although the number of older migrants is increasing significantly, to date only little empirical research deals with migrant family care. In this paper, we thus give an overview of theoretical models on care and wellbeing and adjust them to (different groups of) migrants across Europe. We then present (rare) empirical studies on (in-) formal care and wellbeing, asking: do migrants give/use care more likely than natives and if so, why? Are migrant caregivers more or less burdened compared to non-migrant caregivers? How did the pandemic affect migrant caregivers? Based on our assessments of the state of quantitative research we highlight limitations and propose paths for future research on care in migrant families. [ABSTRACT FROM AUTHOR]

With robots being introduced into caregiving, particularly for older persons, various ethical concerns are raised. Among them is the fear of replacing human caregiving. While ethical concepts like well-being, autonomy, and capabilities are often used to discuss these concerns, this paper brings forth the concept of social dignity to further develop guidelines concerning the use of robots in caregiving. By social dignity, we mean that a person's perceived dignity changes in response to certain interactions and experiences with other persons. In this paper, we will first present the concept of social dignity, and then identify a niche where robots can be used in caregiving in an ethical manner. Specifically, we will argue that, because some activities of daily living are performed in solitude to maintain dignity, a care recipient will usually prefer robotic assistance instead of human assistance for these activities. Secondly, we will describe how other philosophical concepts, which have been commonly used to judge robotic assistance in caregiving for the elderly so far, such as well-being, autonomy, and capabilities, are less useful in determining whether robotic assistance in caregiving is ethically problematic or not. To conclude, we will argue that social dignity offers an advantage to the other concepts, as it allows to ask the most pressing questions in caregiving. [ABSTRACT FROM AUTHOR]

Posttraumatic growth (PTG) refers to positive psychological changes that can occur from the struggle with traumatic experiences. Literature suggests the caregiving experience in psychosis is one which can be highly traumatic. Yet, more recently, a small but growing body of research suggests that positive aspects to caring as well as growth narratives can also result from this experience. The aim of this review was to identify facilitators of PTG in family members caring for an individual with psychosis. The review utilised thematic synthesis to analyse the included qualitative studies. A search of nine electronic databases was performed (Academic Search Complete, CINAHL, MEDLINE, PILOTS, ProQuest Central, PsycARTICLES, PsycINFO, Scopus, and Web of Science). Qualitative studies were included if any domains of PTG were reported. A total of twelve papers, including 156 participants met inclusion criteria and were analysed in the review. Thematic synthesis yielded four overarching themes, along with a number of subthemes: Unbreakable Family Bond, Meaning Making through Suffering, Strength through Solidarity and Accepting the Journey. Findings of this review suggest that caregivers can and do experience PTG when certain facilitators are present. Professionals can play a vital role in supporting caregivers to adjust to and progress along their journey in developing posttraumatic growth. [ABSTRACT FROM AUTHOR]

Objective: The purpose of this investigation was to understand the dynamics among dementia caregiving, vigilance, and home and community-based service use. Methods: This paper is derived from a larger, mixed-methods study on caregiving. We used a descriptive qualitative approach to analyze interview data of 30 family caregivers of relatives with dementia. Results: We found five domains of vigilance in which caregivers felt "on duty": ensuring attentiveness, ensuring safety, ensuring resources, ensuring healthcare, and ensuring closeness. Formal service use did not necessarily give caregivers relief from vigilance, with the language of risk often employed by caregivers. Conclusion: Because service use could contribute to feelings of vigilance, rather than give caregivers a break from a sense of watchfulness, these findings support calls for dementia-specific training for service providers. In future caregiving research, the relationship between vigilance, caregiver distress, and role captivity should be explored. [ABSTRACT FROM AUTHOR]

Objectives: Recruiting and enrolling appropriate participants into research trials for chronic illness populations can be challenging and time intensive. Successful recruitment requires a variety of strategies that may change as the study progresses. This paper reports on the challenges of and actions taken for recruiting and enrolling into research families living with chronic illnesses. Methods: We draw on our experiences from over 20 years of research enrolling older adults and their family caregivers (care dyads) into psychosocial research trials. Barriers and actions taken to challenges of recruiting care dyads are presented that can help future investigators meet their recruitment goals in a timely and efficient manner. Results: Despite efforts of an Advisory Committee, numerous community partnerships, and other attempts to boost enrollment, our recruitment goals were not met. Barriers to meeting these goals are described (e.g. partner site staff turnover, lack of site "champion") and potential actions taken. Discussion: This paper examines the challenges experienced recruiting appropriate chronic illness dyads into a psychosocial intervention as well as the various recruitment strategies that were used in an attempt to reach recruitment goals. [ABSTRACT FROM AUTHOR]

Neoliberalism is an ideology that requires the public/private split in human affairs to exist and to be perceived as normal and natural. This paper begins by looking at the feminist critique of dualisms, as developed by the feminist institutional economist Ann Jennings and feminist economists Paula England and Julie Nelson and then applies their critique of the public/private dualisms to neoliberal conceptions of agency and care. The paper argues that once dualism is exposed as an incorrect representation of existential reality, it becomes impossible to use for justifying the characterization of behavior, invidious distinctions, and the social valuations of human behavior it supports, thereby making neoliberal assumptions about normal behavior that support its policy prescriptions untenable. Finally, it explores the consequences of this critique of neoliberalism on the conceptualization of agency and the economics of care. HIGHLIGHTS Feminist economists and original institutionalists share aspects of their inquiry. Both approaches understand economics as the study of social provisioning. The public/private dualism is necessary to sustain neoliberal ideology. Discrediting the public/private dualism leads to rejecting neoliberal agency. Caring is inconsistent with neoliberal ideology. [ABSTRACT FROM AUTHOR]

Background: The worldwide increase in older persons demands technological solutions to combat the shortage of caregiving and to enable aging in place. Smart home health technologies (SHHTs) are promoted and implemented as a possible solution from an economic and practical perspective. However, ethical considerations are equally important and need to be investigated. Methods: We conducted a systematic review according to the PRISMA guidelines to investigate if and how ethical questions are discussed in the field of SHHTs in caregiving for older persons. Results: 156 peer-reviewed articles published in English, German and French were retrieved and analyzed across 10 electronic databases. Using narrative analysis, 7 ethical categories were mapped: privacy, autonomy, responsibility, human vs. artificial interactions, trust, ageism and stigma, and other concerns. Conclusion: The findings of our systematic review show the (lack of) ethical consideration when it comes to the development and implementation of SHHTs for older persons. Our analysis is useful to promote careful ethical consideration when carrying out technology development, research and deployment to care for older persons. Registration: We registered our systematic review in the PROSPERO network under CRD42021248543. [ABSTRACT FROM AUTHOR]

Maintaining brain health and promoting healthy lifestyle strategies to manage modifiable risk factors is vital to ensuring well-being for all – not only for the individuals with memory challenges but also their family caregivers and professional providers. In this brief review paper, we highlight modifiable risk and protective factors and opportunities for dementia risk reduction (e.g., limited alcohol use and reduced exposure to air pollution, secondhand smoke, and excessive noise); provide an overview of the World-Wide FINGERS Network and its goal to adapt the original Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) multidomain lifestyle approach in various settings to determine whether the protocol is effective across different populations in varied geographic, cultural, and economic settings and to optimize the model across a continuum of cognitive decline; and, comment on challenges and opportunities for researchers and clinicians including opportunities for risk reduction and intervention in primary care settings and the need to establish linkages across multiple levels of intervention to sustain behavior change in prevention, treatment, and care. [ABSTRACT FROM AUTHOR]

Family quality of life (FQOL) is a multidimensional social construct that can be used to enhance a family's well‐being by providing a framework to plan interventions and evaluate outcomes. Although researchers and policymakers see value in the FQOL domains and dimensions, families and practitioners are often skeptical of lengthy evaluations and aggregate scores. Furthermore, many practitioners find that family caregivers who require support and services overwhelmingly focus on the family member needing the most care. In doing so, they perceive their situations in a "spaghetti‐like" way. This strong focus on one aspect of the situation, or one "spaghetti" strand, can result in conversations about planning and implementing interventions becoming cyclical, like a messy tangle of strands. The FQOL lens can be used in intervention planning to transform overlapping spaghetti‐like thoughts into a waffle‐like system of interconnected and compartmentalized thoughts. The purpose of this paper was to describe the individual‐level application of the FQOL theory to plan and evaluate the benefits of a peer‐mediated family empowerment project for aging caregivers of adults with intellectual/ developmental disabilities in Michigan, USA. The study provides examples of how individual‐level FQOL evaluation at pretest informed the development of individualized action plans that focused on the strengths, desires, and challenges of 100 aging families in this statewide project. [ABSTRACT FROM AUTHOR]