UNASSIGNED: Frontotemporal Degeneration (FTD) is a common cause of early onset dementia with symptoms often presenting before 65 years of age and adding tremendous burden on caregivers. FTD caregiving research describes patient behavioral symptoms such as apathy and disinhibition as primary sources of poor caregiver psychological health; however, little attention has been paid to other common patient behaviors, such as loss of empathy. To better understand the relationship between empathy loss and FTD caregiver outcomes, this integrative review aimed to address the question: How does the loss of empathy in a person living with FTD (PLwFTD) impact the caregiver?
UNASSIGNED: Quantitative and qualitative articles were found in PubMed, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Scopus and were assessed for quality using the Crowe Critical Appraisal Tool (CCAT). Through constant comparative analysis, articles were assessed to abstract common themes in the literature.
UNASSIGNED: From 333 citations, 8 qualitative and 8 quantitative studies published between 2010 and 2022 were included. Three main themes were uncovered: 1) caregiver emotional reactions to the PLwFTD; 2) caregiver psychological distress; 3) changes in the relationship.
UNASSIGNED: This review emphasizes the detrimental impact of empathy loss on FTD caregivers. Understanding these underexplored consequences is critical in understanding the well-being of caregivers and promoting ways to support caregivers.

OBJECTIVE: The COVID-19 pandemic magnified pre-existing socioeconomic, operational, and structural challenges in long-term care across the world. In Canada, the long-term care sector\'s dependence on caregivers as a supplement to care workers became apparent once restrictive visitation policies were employed. We conducted a scoping review to better understand the associations between caregiving and resident, formal and informal caregiver health in long-term care before and during the COVID-19 pandemic.
METHODS: A literature search was performed using MEDLINE, AgeLine, Google Advanced, ArXiv, PROSPERO, and OSF. Pairs of independent reviewers screened titles and abstracts followed by a review of full texts. Studies were included if they reported biological, psychological, or social health outcomes associated with caregiving (or lack thereof).
RESULTS: After screening and reviewing 252 records identified by the search strategy, a total of 20 full-text records were eligible and included in this review. According to our results, research on caregiving increased during the pandemic, and researchers noted restrictive visitation policies had an adverse impact on health outcomes for residents and formal and informal caregivers. In comparison, caregiving in long-term care prior to the pandemic, and once visitation policies became less restrictive, led to mostly beneficial health outcomes.
CONCLUSIONS: Caregiver interventions, for the most part, appear to promote better health outcomes for long-term care residents and formal and informal caregivers. Suggestions to better support caregiving in long-term care settings are offered.

BACKGROUND: As patient and public involvement (PPI) in research has become increasingly common, research-based recommendations on its principles and impacts have been established. The specifics of conducting PPI are likely to differ when involving different groups. Family/informal carers for those with health conditions or disabilities have a lot to contribute to research, but instances of their involvement have yet to be reviewed.
OBJECTIVE: To systematically review and synthesize studies where family/informal carers have been involved in the research process, to develop an understanding of the benefits, barriers and facilitating factors.
METHODS: A search of five electronic databases was conducted using a combination of terms relating to carers, involvement and research. A grey literature search, expert consultation and hand-searching were also used. Following screening, data extraction and quality assessment, a narrative synthesis incorporating thematic analysis was conducted.
RESULTS: A total of 55 studies met the inclusion criteria, with diverse design and participatory approaches. Four themes were identified, relating to the outcomes, challenges, and practicalities of involving carers: (re) building relationships with carers; carers as equals not afterthoughts; carers have unique experiences; carers create change. Full involvement throughout the research was not always possible, due to barriers from the research world and responsibilities of the caring role. The literature demonstrated ways for carers to contribute in ways that suited them, maximizing their impact, while attending to relationships and power imbalances.
CONCLUSIONS: By summarizing the reported instances of carer involvement in research, this review brings together different examples of how successful research partnerships can be built with carers, despite various challenges. Carers are a heterogeneous group, and participatory approaches should be tailored to specific situations. Wider understanding of the challenges of conducting empowering research with carers, and the resources required to address these, are needed.
UNASSIGNED: The initial findings and themes were presented to a group of carers who had been involved in research and whose reflections informed the final synthesis.

Complex interactions exist between sex work and parenthood, impacting the lives of those in sex work who also provide care for others. This scoping review aims to review the experiences and challenges of female sex workers who are parents or caregivers, highlighting the socioeconomic, psychological, and legal dimensions of their dual roles. The rationale for this review stems from the recognition that sex workers who are also parents face unique and multifaceted challenges that significantly impact their wellbeing and that of their children. The five stages of a scoping review suggested by Arksey and O\'Malley were followed in this study. A comprehensive literature search was conducted across electronic databases such as PubMed, PsycINFO, and Google Scholar. This study covered publications written in English from 2010 to 2023. Studies were selected based on their focus on sex workers who are parents or caregivers. Both qualitative and quantitative research articles were included. Thematic analysis was employed to synthesize findings across the selected studies. Studies published prior to 2013, studies that were not published in English, and studies that did not address the experiences of female sex workers who are parents or caregivers were excluded from this study. The review identified 14 studies meeting the inclusion criteria. Five key themes emerged from this study: (1) social stigma and healthcare discrimination; (2) legal challenges; (3) mental nexus; (4) risk behaviors and exposing children to a hazardous environment; and (5) social support. Sex workers who are also parents or caregivers navigate a multifaceted landscape of challenges and resilience. Policy reforms are needed to reduce stigma, provide financial support, and ensure legal protections for this key population.

UNASSIGNED: Long-term care (LTC) refers to care and support services that are required by individuals who lack the ability to perform important daily routines and may be dependent on others for personal, social, and medical needs over a sustained period of time. LTC may be broadly categorized into formal and informal care, where formal care is provided by professionals who are compensated to provide these services and informal care captures the care services provided without compensation by family members, friends, or other unpaid individuals.
UNASSIGNED: In this narrative review, we identify and synthesize evidence to evaluate the cost of long-term care while balancing the needs of caregivers. We searched Embase and EconLit for studies published from 2010 to November 2023. Our search strategy used a combination of keywords such as \'long-term care,\' \'caregiver burden,\' \'caregiver support,\' \'cost of care,\' and \'caregiver wellbeing.\' We include both formal and informal LTC, as well as predictors of caregiver wellbeing.
UNASSIGNED: This review highlights the global variability in LTC costs and the significant burden on caregivers, emphasizing the need for policy interventions and comprehensive insurance schemes. Future research should focus on standardized assessment tools, intervention effectiveness, and integrating caregiver support into healthcare models, ensuring holistic and sustainable LTC solutions.

OBJECTIVE: Scholarship on the health of family caregivers to older adults continues to expand. Although existing research suggests that many family caregivers experience pain, which impacts their ability to perform caregiving tasks and is associated with care recipients\' unmet needs, the scope of research on family caregivers\' pain remains poorly characterized. We conducted a scoping review of research on pain among family caregivers to older adults to characterize existing evidence and identify knowledge gaps.
METHODS: We searched multiple databases spanning from January 2012 to July 2023, identified eligible studies using predefined inclusion/exclusion criteria, and extracted key data (e.g., study design/methodology, pain measurement, caregiver pain type, and major findings).
RESULTS: We identified 46 eligible studies conducted in the United States (n = 19) and internationally (n = 27). Studies often focused on caregivers for older adults with specific health conditions, such as cancer (n = 11), dementia (n = 8), or stroke (n = 3). The most commonly employed pain measure was a single-item dichotomous question about pain (n = 16), followed by a visual numeric or visual analog scale (n = 11). Nine studies (five randomized controlled trials) reported on five caregiver pain management interventions, including yoga/exercise programs and caregiver education programs.
CONCLUSIONS: Existing research on family caregivers\' pain offers an important foundation. However, more robust research designs are necessary. We identify possibilities for future studies in addition to opportunities for systematic investigations to support the family caregivers being relied upon to care for the increasing number of older adults.

OBJECTIVE: 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.
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.
CONCLUSIONS: 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.

Self-direction is an approach that allows older adults and people with disabilities to determine the home- and community-based services they receive, including the ability to hire caregivers of their choice. Self-direction has been shown to improve outcomes for the service recipients. The promotion of choice and control in self-direction may also affect family caregivers. We conducted a systematic review examining the impact of self-direction on a broad range of caregiver outcomes.
We conducted a systematic review guided by PRISMA guidelines. Literature search was conducted in 8 databases. We appraised risk of bias using the Joanna Briggs Institute critical appraisal checklists and assessed certainty of evidence using the GRADE framework.
Sixteen studies meeting inclusion criteria were included. We found, with moderate certainty, that self-direction is associated with improved caregivers\' personal and social well-being. Caregivers also reported reduced unmet needs and increased access to care for the care recipients under self-direction. Self-direction did not appear to reduce caregiving hours. With less certainty, self-direction was also positively associated with increased respite care use, perception of choice, and intention to continue caregiving by caregivers.
Beyond delivering person-centered services that improve recipient outcomes, self-direction may also improve the outcomes of family caregivers.

UNASSIGNED: Geriatric and chronic disease patients and families consider the nature, time, and place of death because issues related to the end of life are rarely discussed. This study assessed the end of life decisions and preferences among geriatric and chronic disease patients.
UNASSIGNED: There was an in-depth search in five electronic databases (PubMed Central, CINAHL, Embase, Web of Science, and Scopus) using the population, concept, and context, framework. A matrix was developed, discussed, accepted, and used for data extraction. Convergent synthesis and thematic data analysis technique were adopted for the analysis. The reporting of findings was done in accordance with the JBI and PRISMA guidelines for reviews.
UNASSIGNED: From the data analysis, home-based end of life care was intuitive and included home visits, telephone follow-up, and patient-initiated services. The key themes that emerged from our analysis that sought to influence end end of life decisions were 1) approach to home-based end of life care, 2) patient and family characteristics, 3) clinical characteristics of the patient, 4) health care provider factors, 5) satisfaction and care rendered to the patient and family, 6) family preference of the place of death, 7) collaboration between multidisciplinary teams of care, and 8) challenges associated with the home-based end of life care. The personal characteristics of the nurse (age, personal and work experience, nursing perspective, and competence) and conducting a home visit influenced patient and family end of life decision. Multidisciplinary care teams (nurses and palliative care specialists) were important in delivering effective end-of-life services.
UNASSIGNED: To support patients in making informed decisions, they must be educated on expected outcomes and implications, adverse impacts of decisions, and the emotional influence on the bereaved family. It is important that divergent technological methods are leveraged to provide essential care to patients nearing the end of life at home. Advancing the quality of end of life care techniques through home visiting will improve the feeling of patients and families about the dying process.
UNASSIGNED: End-of-life preferences warrants that, divergent technological methods are leveraged to provide care to patients nearing the end of life.

Ninety-one percent of surviving spouses in the U.S. cared for their spouses before they died. This review explores the challenges of the transition from caregiving to widowhood and different coping strategies used by widowed spousal caregivers. A systematic review of literature on the transition from caregiving to widowhood was conducted using four major academic search engines. Overall, 280 articles were identified, with 22 meeting the inclusion criteria. Challenges for widowed caregivers included experiencing care burden, letting go of the caregiver role, grief, and triggers. Widowed caregivers\' coping strategies included social support and services use, filling the time gap, finding spirituality, and engaging in unhealthy behaviors. Future research is needed to determine the efficacy of widowed caregivers\' coping strategies. Concerted and collaborative action by health professionals, community organizations, and policymakers is needed to develop programs and other approaches to support widowed caregivers.