UNASSIGNED: Progressive supranuclear palsy (PSP), corticobasal syndrome (CBS), and multiple system atrophy (MSA) are rare neurodegenerative diseases associated with rapid decline and require complex symptom management. Caregiving responsibilities significantly increase with progression of these atypical Parkinsonian syndromes, yet care burden in these syndromes has not been researched extensively to date.
UNASSIGNED: The Zarit Burden Interview (ZBI) was used to assess burden in care partners of patients clinically diagnosed with PSP, CBS, or MSA seen in specialty interdisciplinary clinics at two academic movement disorders centers. Univariable and multivariable regression analyses were performed to evaluate cross-sectional demographic and clinical determinants of care partner burden.
UNASSIGNED: A total of 139 care partners completed the ZBI (59.0% PSP, 28.1% MSA, 12.9% CBS). Cohorts at both medical centers were similar across all variables. Female gender of both patients and care partners was independently associated with higher ZBI scores. Additionally, MSA-Parkinsonian type was significantly associated with lower total care partner burden compared to PSP and CBS.
UNASSIGNED: Several determinants of higher care partner burden in atypical Parkinsonian syndromes were identified, particularly female gender and diagnosis. Healthcare professionals can consider this information when assessing individualized needs of patients and care partners and referring to disease-specific resources. Additionally, this study\'s methods and results highlight the potential to further explore interdisciplinary care as a means of comprehensive evaluation and support for those with atypical Parkinsonism.

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.

UNASSIGNED: Care partners of persons living with dementia (PLWD) often feel unprepared to care for their loved ones. Improving PLWD care partner identification and education during hospital stays can improve preparedness. This retrospective EHR study investigated PLWD characteristics that may relate to care partner identification, education, and teaching methods during hospital stays.
UNASSIGNED: Encounters from a Midwestern academic healthcare system were used. Patients were over 18, had a documented dementia diagnosis, were admitted to the hospital for at least 24 h, and had information documented in care partner or education data fields (N = 7982). Logistic regressions assessed patient\'s demographics, care partner identification and education. Chi-square tests compared education teaching methods and patient discharge location.
UNASSIGNED: PLWD\'s who were unmarried, discharged to other care facilities, or received the diagnosis \"degeneration of nervous system due to alcohol\" were associated with lacking care partner identification. Care partners of unmarried PLWDs or those with the diagnosis \"Alzheimer\'s disease, unspecified\" received less education. Multiple teaching methods were associated with discharge location.
UNASSIGNED: Multiple characteristics were related to PLWD care partner identification and education differences during hospital stays.
UNASSIGNED: Novel analyses highlight need for a protocol to systematically prepare dementia care partners.

BACKGROUND: In the United States, 1 in 5 adults currently serves as a family caregiver for an individual with a serious illness or disability. Unlike professional caregivers, family caregivers often assume this role without formal preparation or training. Thus, there is an urgent need to enhance the capacity of family caregivers to provide quality care. Leveraging technology as an educational tool or an adjunct to care is a promising approach that has the potential to enhance the learning and caregiving capabilities of family caregivers. Large language models (LLMs) can potentially be used as a foundation technology for supporting caregivers. An LLM can be categorized as a foundation model (FM), which is a large-scale model trained on a broad data set that can be adapted to a range of different domain tasks. Despite their potential, FMs have the critical weakness of \"hallucination,\" where the models generate information that can be misleading or inaccurate. Information reliability is essential when language models are deployed as front-line help tools for caregivers.
OBJECTIVE: This study aimed to (1) develop a reliable caregiving language model (CaLM) by using FMs and a caregiving knowledge base, (2) develop an accessible CaLM using a small FM that requires fewer computing resources, and (3) evaluate the model\'s performance compared with a large FM.
METHODS: We developed a CaLM using the retrieval augmented generation (RAG) framework combined with FM fine-tuning for improving the quality of FM answers by grounding the model on a caregiving knowledge base. The key components of the CaLM are the caregiving knowledge base, a fine-tuned FM, and a retriever module. We used 2 small FMs as candidates for the foundation of the CaLM (LLaMA [large language model Meta AI] 2 and Falcon with 7 billion parameters) and adopted a large FM (GPT-3.5 with an estimated 175 billion parameters) as a benchmark. We developed the caregiving knowledge base by gathering various types of documents from the internet. We focused on caregivers of individuals with Alzheimer disease and related dementias. We evaluated the models\' performances using the benchmark metrics commonly used in evaluating language models and their reliability for providing accurate references with their answers.
RESULTS: The RAG framework improved the performance of all FMs used in this study across all measures. As expected, the large FM performed better than the small FMs across all metrics. Interestingly, the small fine-tuned FMs with RAG performed significantly better than GPT 3.5 across all metrics. The fine-tuned LLaMA 2 with a small FM performed better than GPT 3.5 (even with RAG) in returning references with the answers.
CONCLUSIONS: The study shows that a reliable and accessible CaLM can be developed using small FMs with a knowledge base specific to the caregiving domain.

BACKGROUND: Dementia impairs the ability of people with dementia to be autonomous and independent. They need support from third parties, who should ideally respect their autonomy and independence as much as possible. Supporting people with dementia can be very burdensome for caregivers and numbers of patients increase while numbers of potential caregivers decline. Digital assistive technologies (DATs) that directly support patients or their caregivers may help bridging the increasing gap between need of support and available resources. DATs have the potential to preserve the autonomy and independence of people with dementia and promote their abilities, if they are properly designed in close interaction with future users. In our study, we focused on ethical concerns, technological requirements, and implementation criteria for DAT in general and specifically to support outdoor mobility of people with dementia.
METHODS: We applied a qualitative approach and conducted a World Café (2 tables, n = 7) and an online focus group (n = 6) with people with dementia, relatives, healthcare professionals, scientists, ethics experts, and experts for digitally-assisted medical care. We descriptively analyzed the data using a content analysis approach.
RESULTS: The participants reported technological (e.g., lack of Wi-Fi), financial (e.g., expensive devices or lack of budget for DATs), political (e.g., legal hurdles such as the European Medical Device Law or data protection regulations) as well as user-related hurdles (e.g., lack of digital competence) for the implementation of DAT in dementia care. Among the issues discussed were the importance of autonomy, independence, safety, privacy, and questions of decision making capacity in DAT\'s use. Participants identified opportunities and benefits in self-learning, situation-aware DATs and wished for dementia-friendly communities. They emphasized the value of personal interaction that should not be replaced, but rather supported by DAT.
CONCLUSIONS: The results revealed multiple hurdles and ethical concerns for DAT use and provided recommendations for designing and implementing DATs. Further investigations are needed on the impact of DAT on personal interactions in caregiving and the role of DAT in dementia-friendly communities.

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: Given that mental illness stigma is a common occurrence amongst people with mental illness and caregivers (CGs) can be a potential victim of stigma themselves, there is a need to examine caregivers\' perspective on the phenomenon. This study is part of a larger study which aims to qualitatively examine the concept of mental illness stigma amongst different stakeholders in Singapore.
UNASSIGNED: Focus group discussions (FGDs) were conducted amongst 21 informal caregivers to explore the experience of stigma encountered by them and their care recipients, and how it may implicate their caregiving experience. Both inductive and deductive thematic analyses were employed to analyze the data.
UNASSIGNED: Three overarching themes of stigma encounters that may have implication on caregiving experience were identified: 1) Stigma within the family; 2) Structural stigma; and 3) Stigma by association. Experience of stigma within family (e.g., social exclusion and lack of understanding) limits the caregiving supports available to CGs. CGs also took up a mediating role between their care recipients and other family who may hold stigmatizing views. Witnessing their care recipients being subjected to structural disadvantages (e.g., employment, school, and mandatory conscription) can induce emotional stresses amongst CGs and motivate them to protest and seek redress on their behalf. Furthermore, encounters of stigma themselves (e.g., being judged or blamed for their loved one\'s condition) also led to feelings of guilt and self-blame amongst the CGs.
UNASSIGNED: These findings can aid the formulation of interventions in informing CGs on what to expect on their caregiving journey and supporting them in dealing with issues relating to stigma and highlight the importance of anti-stigma efforts in organizational settings such as schools, corporations, and government agencies.

The prevalence of informal caregiving is increasing as populations across the world age. Caregiving has been found to be associated with poor mental health outcomes including depressive symptoms. The purpose of this study is to examine the mean trajectory of depressive symptomatology in older caregivers in a large European sample over an eight-year period, the effects of time-varying and time-invariant covariates on this trajectory, and the mean trajectory of depressive symptomatology according to pattern of caregiving. The results suggest that depressive symptoms in the full sample of caregivers follow a nonlinear trajectory characterized by an initial decrease which decelerates over time. Caregiver status and depressive symptoms were significantly associated such that depressive symptoms increased as a function of caregiver status. The trajectory in caregivers who report intermittent or consecutive occasions of caregiving remained stable over time. Significant associations were found between sociodemographic, health and caregiving characteristics and the initial levels and rates of change of these trajectories. While these results point to the resilience of caregivers, they also highlight the factors that are related to caregivers\' adaptation over time. This can help in identifying individuals who may require greater supports and, in turn, ensuring that caregivers preserve their well-being.

Family caregivers may be at particular risk for social isolation and loneliness. Multiple factors can impact caregivers\' health and well-being outcomes, including loneliness. Guided by an adaptation of the Stress Process Model of Caregiving, this study uses the 2019 National Survey of Older Americans Act Participants (NSOAAP)-Family Caregiver Support module to inform efforts to reduce loneliness through family caregiver support programs. A hierarchical multiple regression model reveals that caregivers who report more loneliness are more likely to be female, Hispanic, living alone, not a child or other caregiver of the care recipient, have a care recipient with 3+ ADL needs, experience more social life conflict related to caregiving, experience less joy in caregiving, feel less appreciated by the care recipient, feel less support in caregiving, and attend counseling. This study helps advance the goals of the National Strategy to Support Family Caregivers, and the findings underscore the importance of continuing and expanding efforts to address loneliness and related well-being outcomes among family caregivers.

BACKGROUND: Older adults with varying patterns of multimorbidity may require distinct types of care and rely on informal caregiving to meet their care needs. This study aims to identify groups of older adults with distinct, empirically-determined multimorbidity patterns and compare characteristics of informal care received among estimated classes.
METHODS: Data are from the 2011 National Health and Aging Trends Study (NHATS). Ten chronic conditions were included to estimate multimorbidity patterns among 7532 individuals using latent class analysis. Multinomial logistic regression model was estimated to examine the association between sociodemographic characteristics, health status and lifestyle variables, care-receiving characteristics and latent class membership.
RESULTS: A four-class solution identified the following multimorbidity groups: some somatic conditions with moderate cognitive impairment (30%), cardiometabolic (25%), musculoskeletal (24%), and multisystem (21%). Compared with those who reported receiving no help, care recipients who received help with household activities only (OR = 1.44, 95% CI 1.05-1.98), mobility but not self-care (OR = 1.63, 95% CI 1.05-2.53), or self-care but not mobility (OR = 2.07, 95% CI 1.29-3.31) had greater likelihood of being in the multisystem group versus the some-somatic group. Having more caregivers was associated with higher odds of being in the multisystem group compared with the some-somatic group (OR = 1.09, 95% CI 1.00-1.18), whereas receiving help from paid helpers was associated with lower odds of being in the multisystem group (OR = 0.36, 95% CI 0.19-0.77).
CONCLUSIONS: Results highlighted different care needs among persons with distinct combinations of multimorbidity, in particular the wide range of informal needs among older adults with multisystem multimorbidity. Policies and interventions should recognize the differential care needs associated with multimorbidity patterns to better provide person-centered care.