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.

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.

BACKGROUND: Promoting options for aging in place (AIP) has broad appeal to policymakers and professionals providing services to persons living with dementia (PWD). However, the benefits or burdens of AIP likely vary among individuals and families. We sought to describe factors influencing decision-making to age in place versus seek a higher level of residential care for PWD.
METHODS: A qualitative study was undertaken as part of a larger mixed-methods study utilizing semi-structured interviews with PWD, family care partners, and dementia clinicians. Interview transcripts were analyzed using qualitative content analysis with constant comparison. Sample size was determined by thematic saturation within subgroups.
RESULTS: We conducted 74 interviews among 14 PWD, 36 care partners, and 24 clinicians. Preferences for AIP were driven by (1) desire to preserve independence, (2) a sense that the \"best care\" is delivered by loved ones and in a familiar environment, (3) distrust and fear of care facilities, and (4) caregiver guilt. PWD and care partners frequently considered moving from home as a \"last resort\" and wanted to avoid planning for future care needs. Many decisions to move were reactive and triggered by patient safety events, physical dependency, or the loss of caregiver. Proactive decision-making was facilitated by (1) prior experience witnessing the challenges of caring for a person with advanced dementia in the home; and (2) having substantial financial resources such that participants could seek major home adaptations or avoid \"lower quality\" institutions.
CONCLUSIONS: Decisions regarding care setting for PWD frequently do not feel like a choice and are made under imperfect conditions. Programs using AIP as an outcome measure should recognize the various patient-centered and non-patient-centered factors that influence such choices, and interventions should be designed to promote more informed and equitable decision-making for care setting in dementia.

Although co-occurring cognitive impairment and physical disability in older adults is common, there is little understanding of how this group perceives their ability to do their daily activities. This study used photovoice to explore how older adults with MCI/early dementia and physical disability without and with care partners (dyads) perceive challenges with their daily activities. Photovoice is a visual research methodology to capture participants\' insight on aspects of their daily lives. No known studies have taken this approach to explore the experiences of older adults with MCI/early dementia and co-occurring physical disability. We used a cross-sectional, exploratory research design to understand participants\' (n = 12) experiences in their home environment. Photos and participant thoughts on the photos were categorized based on the Blackfoot Breath of Life Theory and the Hierarchy Model of Needs in Dementia, an adaptation of Maslow\'s Model. Notable findings included: awareness of physical/cognitive difficulties by older adults, solutions for ADL difficulty in persons with MCI/early dementia, care partners\' difficulty recognizing pain without the presence of severe emotional or physical responses, reducing mood severity, and self-esteem needs met with structured, memory-issue adapted, meaningful activities. Older adults with co-occurring physical disability and MCI/early dementia identified both physiological and psychological needs despite challenges impacting their cognition. Photovoice evoked daily situations of these individuals and revealed the importance of developing individualized intervention elements for older adults with dementia and physical disability.

OBJECTIVE: To present a concept analysis of neglect, specifically examining its occurrence and implications in the context of family caregiving for older adults living with dementia.
METHODS: A literature search was conducted in Medline, CINAHL, Scopus, and Embase databases in February 2023. Inclusion criteria targeted articles focusing on neglect in dementia family caregiving, leading to the identification of 11 articles for thorough review. Employing Caron and Bowers\' dimensional analysis approach, the concept analysis aimed to elucidate neglect as a social construct shaped by diverse contexts, perspectives, and underlying assumptions.
RESULTS: Neglect in this context emerged as a multidimensional phenomenon, influenced by contextual elements such as activities of daily living and behavioral symptoms of dementia. It encompasses dimensions including \"expectations of unmet needs\", \"maladaptive behaviors\", and \"feelings of guilt\", considering the perspectives of both caregivers and individuals living with dementia. Recognizing neglect as a dyadic phenomenon emphasizes the significance of interactions between caregivers and individuals living with dementia.
CONCLUSIONS: A comprehensive understanding of neglect in dementia family caregiving is crucial for effective interventions and support systems. The dyadic perspective is vital for accurate assessment. Primary care physicians, mental health, nurses, and other health professionals play a key role in prevention and supporting family caregivers. Further research is needed to explore the dynamics of dementia caregiving settings strengthening prevention strategies against elder neglect.

BACKGROUND: The health and well-being of children in foster care are of high concern. A resource with which to disrupt maladaptation and promote healing are positive relationships among children and caregivers within the foster home. The research question was: Can an online intervention improve family hardiness and sibling relationships within foster care families?
OBJECTIVE: To: (1) establish feasibility and acceptability of an online behavioral intervention within the foster family, (2) explore the effects of the intervention on relational quality outcomes, and (3) decompose the mechanisms driving improved family hardiness through mediation analysis.
METHODS: 95 currently fostering families across the US, participated in a 4-week, online, self-paced, behavioral intervention with an emphasis on the relationship between children residing in the home.
METHODS: We employed a randomized control trial design with multiple regression analysis. Stress and relational quality outcomes were measured through psychometrically validated questionnaires on family hardiness, preparedness, and sibling relationships.
RESULTS: Significant increase in family hardiness (Cohen\'s d = 0.97, p < 0.001) were found compared to the control group. Measures of a positive sibling relationship score increased significantly in the intervention group (d = 0.76, p < 0.002), mediating 32 % of the total effect in hardiness score. Sibling relationship served as a mediator for increasing indicators of family hardiness.
CONCLUSIONS: Providing families the sibling-inclusive intervention caused an increase in positive indicators of sibling relationship and overall family hardiness. Researchers should consider the implications of supporting foster siblings and the affects their inclusion may have on outcomes for children in foster care.

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.

OBJECTIVE: Care partners of persons living with dementia perform significant financial planning in partnership with the person for whom they care. However, research is scarce on care partners\' confidence and experiences with financial planning. The purpose of this study was, first, to quantify care partners\' confidence across different financial planning topics. We sought to understand whether income, education, relationship type, and years of experience are related to care partners\' level of confidence in financial planning. Second, we sought to better understand the reasons for these confidence ratings by examining care partners\' experiences of financial planning.
METHODS: We conducted an online survey that asked a combination of quantitative and qualitative questions to understand care partners\' confidence and experiences with financial planning. Participants were nationally recruited care partners of persons living with dementia. Multivariate linear regression was used to understand different subgroups\' levels of confidence in each financial planning topic. Inductive thematic analysis was used to understand qualitative data.
RESULTS: The financial planning topics in which participants (N = 318) felt the least confident were: options when there is not enough money to provide care; tax deductions available to cut care costs; and sources of money from government programs for which the care recipient is eligible. Differences in confidence were observed among care partners with lower incomes, less experience, and caring for a parent. Qualitatively, participants described the challenges of care budgeting and protecting personal finances; confusion about long-term care insurance and accessing resources; and, among confident care partners, reasons for this sense of preparedness.
CONCLUSIONS: These results underscore the need for tailored interventions and technologies that increase care partners\' confidence in specific aspects of financial planning, including long-term care insurance, available financial support, and what to do when money runs out.

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.