"It Made Me Feel Like a Person Again": Benefits of Meals on Wheels-Based Social Connection Programs.

Social isolation and loneliness are associated with negative health outcomes, and these outcomes are exacerbated among older adults who are homebound. To address this issue, Meals on Wheels programs increasingly provide social connection services to clients in addition to home-delivered meals. This descriptive qualitative study examines the impact of three types of social connection programs on the well-being of homebound older adult clients, as well as on the volunteers and staff members who deliver the programs. Thematic analysis of semi-structured interviews conducted with 117 clients, volunteers, and staff in six Meals on Wheels social connection programs across the United States indicated that program participation was associated with substantial benefits. Benefits included the development of supportive friendships, reduced feelings of loneliness, and an improved overall sense of well-being. Insights from this study may inform the development, expansion, and sustainability of social connection programs provided by community-based organizations.

The cancer caregiving burden trajectory over time: varying experiences of perceived versus objectively measured burden.

INTRODUCTION: The objective of this study was to comprehensively understand the burden experienced by caregivers (CGs) providing home-based, end-of-life care to patients with cancer. We examined the relationship between objective and subjective burden including whether and how burden changes over time. METHODS: A case series of terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for 12 months or until patient death. Data were collected every other week and in-person from CGs in their homes using quantitative surveys, diaries, and monthly structured observations. RESULTS: Bivariate correlations revealed a significant association between subjective burden and activities of daily living (ADLs), instrumental activities of daily living (IADL), high-intensity tasks, and time spent on ADLs; these correlations varied over time. Models examining the slope of subjective burden revealed little systematic change; spouse caregiver and patient functional limitations were positively, and Black caregiver was negatively associated with subjective burden. Generally, the slopes for measures of objective burden were significant and positive. Models showed subjective burden was positively associated with most measures of objective burden both within caregiver (concurrent measures were positively associated) and between CGs (those with higher subjective also had higher objective). CONCLUSIONS: Cancer caregiving is dynamic; CGs must adjust to the progression of the patient's disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services.

Outcomes After Community Discharge From Skilled Nursing Facilities: The Role of Medicaid Home and Community-Based Services.

This study investigated the association between Medicaid Home and Community-Based Services (HCBS) generosity and post-discharge outcomes among dual-eligible beneficiaries discharged from skilled nursing facilities (SNFs). We linked multiple national datasets for duals discharged from SNFs between 2010 and 2013. Accounting for SNF fixed effects, we estimated the effect of HCBS generosity, measured by its breadth and intensity, on the likelihood of remaining in the community, risks of death, nursing home (NH) admission, and hospitalizations within 30 and 180 days after SNF discharge. We found that higher HCBS generosity was associated with an increased likelihood of remaining in the community. HCBS breadth and intensity were both significantly associated with reduced risks of NH admission, while higher HCBS intensity was related to a reduced risk of acute hospitalizations within 30 days after discharge. Our findings suggest that more generous HCBS programs may facilitate smoother transitions and sustainable community living following SNF discharge.

Evaluating the Implementation Fidelity of a Pilot Pragmatic Randomized Clinical Trial Comparing Daily-Delivered Meals to Mailed Frozen Meals.

In pragmatic clinical trials (PCTs), the intervention is carried out by participating sites instead of research staff. In this paper, we evaluate study sites' implementation adherence during a pilot PCT of home-delivered meals for older adults with dementia. Participants at three home-delivered meal programs were randomized to receive either (1) meals delivered daily or (2) frozen meals mailed every two weeks; participants' outcomes were tracked for six months. Using the adherence domains from the Framework for Implementation Fidelity, we identified six metrics to assess adherence, with a total possible adherence score ranging from 6 (low adherence) to 18 (high adherence); all three sites scored within the top quartile of adherence. Despite challenges to meal delivery during the COVID-19 pandemic, sites successfully implemented the intervention, justifying a follow-on PCT to test the comparative effectiveness of models of meal delivery on the time to nursing home placement for people living with dementia.

Dementia Caregiver Experiences: Insights From a Telephone-Based Support Program.

Dementia caregivers face daunting challenges as both the oldest subpopulation of those providing unpaid care and the most at risk of adverse health outcomes as a result of their role, including depression, anxiety, and increased mortality. To better understand the experiences and needs of dementia caregivers, a qualitative content analysis was conducted of secondary data extracted from call logs (N = 569) recorded by a provider-initiated, telephone-based support program. Experiences identified from the call logs were coded, categorized, and ranked to determine the most prevalent dementia caregiving-related experiences. Features of the program, particularly the semi-structured call format and directionality of calls, helped to uniquely capture common experiences of family caregivers and their day-to-day concerns. Findings from this analysis reflect the high prevalence of caregiver mental and emotional health-related concerns. This analysis supports the development of interventions that align with the experiences of dementia caregivers.

Barriers to Community Service Use Among Persons With Dementia and Their Care Partners: A Focus on Consumers of a Novel Statewide Dementia Care Program.

Although the importance of access to, and utilization of, home and community-based services (HCBS) is a well-documented aspect of informal care and the ability to age in place among people living with dementia, these resources are underutilized, especially in the initial stages of the disease. In 2017, the Georgia Memory Net was established as a novel private-public partnership to extend dementia screening, diagnosis, care planning, and direct HCBS connections for people with memory concerns throughout the State of Georgia. We aimed to identify barriers and facilitators to HCBS utilization following a dementia diagnosis and subsequent referral for services. Data were collected through in-depth interviews with 7 Georgia Memory Net patients and 19 care partners (unconnected dyads) and analyzed using thematic analysis. We found that even with a direct handoff, many people do not use HCBS and face barriers to accessing services. We offer several recommendations based on these findings.

The Effect of Home- and Community-Based Services on Social Engagement.

Objectives: Home- and community-based services (HCBS) help older adults to remain active in community settings. However, it is not known if there is a causal relationship between HCBS and social engagement. Methods: We used data from the 2010 and 2012 Health and Retirement Study and measured the effect of HCBS on social engagement via nearest-neighbor Mahalanobis matching, optimal pair matching, genetic matching, and optimal full matching. Results: Genetic matching showed that the odds of social engagement for participants who received at least one HCBS (congregate meal, home-delivered meal, transportation service, case management, homemaker or housekeeping services, or caregiver services) in the prior two years was 1.07 times more likely than participants who have not received any HCBS (robust SE = .030, p = .040). Discussion: HCBS may remove barriers to social engagement through increasing older adults' personal resources and personal networks.

Conceptualizing Family Caregivers' Use of Community Support Services: A Scoping Review.

BACKGROUND AND OBJECTIVES: Only a fraction of the 53 million caregivers in the United States use available formal community services. This scoping review synthesized the literature on the barriers and facilitators of community support service utilization by adult caregivers of a family member or friend with an illness, disability, or other limitation. RESEARCH DESIGN AND METHODS: We searched PubMed, CINAHL, PsycInfo, and Web of Science for quantitative and qualitative articles assessing barriers and facilitators of caregivers' access to and utilization of resources, following Preferred Reporting Items for Systematic Review and Meta-Analysis scoping review guidelines. Thematic analysis, drawing on an initial conceptualization, informed key insights around caregivers' resource navigation process. RESULTS: The review provides support for individual factors affecting service use. Notably, some factors-such as time restrictions and increased caregiving demands-appear to function as barriers to accessing services even as they increase caregivers' need for support. Additionally, contextual barriers including cultural factors and support of friends/family can affect caregivers' access to resources. Finally, experience with health systems and structures and the intersection with other factors can affect service utilization. DISCUSSION AND IMPLICATIONS: Suboptimal access to and utilization of community support services can be addressed at both the person and system level to mitigate potential inequities. Ensuring that caregivers are aware of, eligible for, and have the capacity and support to access the appropriate resources at the right time is essential for improving caregiver outcomes, reducing burnout, and supporting continued care.

Person-Centered Home Care: Exploring Worker-Client Relationships Using an Intersectional and Critical Disability Framework.

More research is needed into how "person-centered care" (PCC) manifests in home care (HC) worker-client relationships. Qualitative data were collected at three time points from twelve HC workers and others to better understand how approaches to care shape the pathways of older adult HC clients with chronic conditions in two Canadian health jurisdictions. This paper uses critical disability and intersectionality frameworks to highlight ways in which PCC enables social and instrumental benefits for workers' and clients. It also exposes difficulties in being flexible and developing interpersonal relationships because of HC policies. Workers also acknowledged risks when trying to prioritize client preferences, sometimes drawing distinctions between reasonable and unreasonable demands. Implications for enhanced training and support for workers around navigating flexibility and boundaries and using a relational approach to PCC are discussed, as are implications for policy-making that protect all parties.

Potential Factors Influencing Adoption of a Primary Care Pathway to Prevent Functional Decline in Older Adults.

Introduction: To help recognize and care for community-dwelling older adults living with frailty, we plan to implement a primary care pathway consisting of frailty screening, shared decision-making to select a preventive intervention, and facilitated referral to community-based services. In this study, we examined the potential factors influencing adoption of this pathway. Methods: In this qualitative, descriptive study, we conducted semi-structured interviews and focus groups with patients aged 70 years and older, health professionals (HPs), and managers from four primary care practices in the province of Quebec, representatives of community-based services and geriatric clinics located near the practices. Two researchers conducted an inductive/deductive thematic analysis, by first drawing on the Consolidated Framework for Implementation Research and then adding emergent subthemes. Results: We recruited 28 patients, 29 HPs, and 8 managers from four primary care practices, 16 representatives from community-based services, and 10 representatives from geriatric clinics. Participants identified several factors that could influence adoption of the pathway: the availability of electronic and printed versions of the decision aids; the complexity of including a screening form in the electronic health record; public policies that limit the capacity of community-based services; HPs' positive attitudes toward shared decision-making and their work overload; and lack of funding. Conclusions: These findings will inform the implementation of the care pathway, so that it meets the needs of key stakeholders and can be scaled up.

Caregiving for Older Adults With Dementia During the Time of COVID-19: A Multi-State Exploratory Qualitative Study.

This qualitative semi-structured interview study explores how 64 family caregivers for older adults with Alzheimer's Disease and related dementias across eight states experienced and executed caregiving decisions before and during the COVID-19 pandemic. First, caregivers experienced challenges communicating with loved ones and healthcare workers in all care settings. Second, caregivers displayed resilient coping strategies in adapting to pandemic restrictions, finding novel strategies to balance risks while preserving communication, oversight, and safety. Third, many caregivers modified care arrangements, with some avoiding and others embracing institutional care. Finally, caregivers reflected on the benefits and challenges of pandemic-related innovations. Certain policy changes reduced caregiver burden and could improve care access if made permanent. Telemedicine's increasing use highlights the need for reliable internet access and accommodations for individuals with cognitive deficits. Public policies must pay greater attention to challenges faced by family caregivers, whose labor is both essential and undervalued.

A Profile of the Direct Care Workforce in Home- and Community-Based Services.

We used data from the 2020 American Community Survey to compare direct care workers (DCWs) in home and community-based services (HCBS) with workers in other long-term supportive services (LTSS), such as skilled nursing facilities (SNFs) and assisted living facilities (ALFs). Compared to DCWs in SNFs and ALFs, a higher proportion of DCWs in HCBS were over age 65, Latino/a, and single. A lower proportion of DCWs in HCBS worked for a for-profit company, worked year-round and full-time, and had employer-based health insurance.

Barriers and Facilitators to Home- and Community-Based Services Access for Persons With Dementia and Their Caregivers.

OBJECTIVES: The United States has seen increasing shifts toward home- and community-based services (HCBS) in place of institutional care for long-term services and supports. However, research has neglected to assess whether these shifts have improved access to HCBS for persons with dementia. This paper identifies HCBS access barriers and facilitators, and discusses how barriers contribute to disparities for persons with dementia living in rural areas and exacerbate disparities for minoritized populations. METHODS: We analyzed qualitative data from 35 in-depth interviews. Interviews were held with stakeholders in the HCBS ecosystem, including Medicaid administrators, advocates for persons with dementia and caregivers, and HCBS providers. RESULTS: Barriers to HCBS access for persons with dementia range from community and infrastructure barriers (e.g., clinicians and cultural differences), to interpersonal and individual-level barriers (e.g., caregivers, awareness, and attitudes). These barriers affect the health and quality of life for persons with dementia and may affect whether individuals can remain in their home or community. Facilitators included a range of more comprehensive and dementia-attuned practices and services in health care, technology, recognition and support for family caregivers, and culturally competent and linguistically accessible education and services. DISCUSSION: System refinements, such as incentivizing cognitive screening, can improve detection and increase access to HCBS. Disparities in HCBS access experienced by minoritized persons with dementia may be addressed through culturally competent awareness campaigns and policies that recognize the necessity of familial caregivers in supporting persons with dementia. These findings can inform efforts to ensure more equitable access to HCBS, improve dementia competence, and reduce disparities.

Aging in Place Through the COVID-19 Pandemic: Perspectives from Aging Service Providers.

Formal and informal networks of resources are critical to supporting the growing number of older adults aging in place (AIP). Data are needed from aging-service providers about assets and barriers that impact their abilities to support AIP during the pandemic, as well as emergent needs resulting from response measures. A series of World Café workshops were conducted with aging-service providers in Salt Lake City, Utah, to understand supportive factors, service gaps, and future needs. Novel domains to support AIP in the context of the pandemic were identified: digital access and literacy, social isolation and mental health, and emergency preparedness. Issues related to access, equity, and affordability were identified as overarching themes across domains. Issues reflect concern over how the pandemic exacerbated socioeconomic and cultural disparities impacting older adults who benefit from aging services. Networks of advocacy and support are needed to bolster resources for older adults, caregivers, and aging-service providers.

Access and Use of Services by Caregivers of Older Adults: A Scoping Review of Cultural and Linguistic Diversity.

Westernized countries are home to an increasingly culturally and linguistically diverse (CLD) older adult population. Informal caregivers of CLD older adults face unique challenges accessing and using home- and community-based services (HCBS). This scoping review sought to identify facilitators and barriers to access and use of HCBS for informal caregivers of CLD older adults. Arksey and O'Malley's framework guided a systematic search of five electronic databases. The search strategy retrieved 5979 unique articles. Forty-two studies met the inclusion criteria and informed this review. Facilitators and barriers were identified at three stages of using services: knowledge, access, and use of services. Findings concerning access to HCBS were subdivided into willingness and ability to access HCBS. Results emphasize the need for changes in healthcare systems, organizations, and providers to provide culturally appropriate care and improve the accessibility and acceptability of HCBS for informal caregivers of CLD older adults.

Who Will Care for Rural Older Adults? Measuring the Direct Care Workforce in Rural Areas.

Using the 2021 Occupational Employment and Wage Statistics (OEWS) dataset, we calculate the ratio of direct care workers relative to the population of older adults (ages 65+) across rural and urban areas in the US. We find that there are, on average, 32.9 home health aides per 1000 older adults (age 65+) in rural areas and 50.4 home health aides per 1000 older adults in urban areas. There are, on average, 20.9 nursing assistants per 1000 older adults in rural areas and 25.3 nursing assistants per 1000 older adults in urban areas. There is substantial regional variation. Greater investment needs to be made in improving wages and job quality for direct care workers to attract workers to these critical occupations, especially in rural areas where the need for direct care is greater.

Strategies for implementing the interRAI home care frailty scale with home-delivered meal clients.

Introduction: Frailty is a complex condition that is highly associated with health decline and the loss of independence. Home-delivered meal programs are designed to provide older adults with health and nutritional support that can attenuate the risk of frailty. However, home-delivered meal agencies do not routinely assess frailty using standardized instruments, leading to uncertainty over the longitudinal impact of home-delivered meals on frailty levels. Considering this knowledge gap, this study aimed to facilitate home-delivered meal staff's implementation of a standardized frailty instrument with meal clients as part of routine programming. This article (a) describes the use of Implementation Mapping principles to develop strategies supporting frailty instrument implementation in one home-delivered meal agency and (b) examines the degree to which a combination of strategies influenced the feasibility of frailty instrument use by home-delivered meal staff at multiple time points. Methods and materials: This retrospective observational study evaluated staff's implementation of the interRAI Home Care Frailty Scale (HCFS) with newly enrolled home-delivered meal clients at baseline-, 3-months, and 6-months. The process of implementing the HCFS was supported by five implementation strategies that were developed based on tenets of Implementation Mapping. Rates of implementation and reasons clients were lost to 3- and 6-month follow-up were evaluated using univariate analyses. Client-level data were also examined to identify demographic factors associated with attrition at both follow-up time points. Results: Staff implemented the HCFS with 94.8% (n = 561) of eligible home-delivered meal clients at baseline. Of those clients with baseline HCFS data, staff implemented the follow-up HCFS with 43% of clients (n = 241) at 3-months and 18.0% of clients (n = 101) at 6-months. Insufficient client tracking and documentation procedures complicated staff's ability to complete the HCFS at follow-up time points. Discussion: While the HCFS assesses important frailty domains that are relevant to home-delivered meal clients, its longitudinal implementation was complicated by several agency- and client-level factors that limited the extent to which the HCFS could be feasibly implemented over multiple time points. Future empirical studies are needed to design and test theoretically derived implementation strategies to support frailty instrument use in the home- and community-based service setting.

Insights and Innovation: How a Local Public-Private Partnership is Building Home Care.

Recent national reports asserted an urgent imperative for transforming working conditions for the direct care workforce in the US. These clarion reports identified key influencers in reform as federal and state governments, workers' unions and coalitions, individual and organizational employers. Equally essential and well-positioned local actors have been overlooked in the conversation-namely, municipalities, area agencies on aging, higher education, philanthropic entities, and community. Although deemed "essential," direct care workers have been disproportionately affected by the COVID-19 pandemic. This paper examines an early public-private partnership initiative designed to recruit and train PCAs in Virginia.

Aide and Client Safety "Should Go Hand-In-Hand": Qualitative Findings From Home Care Aides, Clients, and Agency Leaders.

Retention of the home care (HC) aide workforce is essential to meet the needs of our aging population. Some studies suggest that improving HC safety could increase job retention. This study objective was to explore qualitatively the connection between aide and client safety and factors impacting this care relationship. Data consisted of audio-recorded, verbatim responses to open-ended questions of two focus groups with aides (n = 10), two in-person interviews with HC agency managers, and 37 phone interviews with those working in (aides, n = 16; managers, n = 12) and receiving (clients, n = 9) HC. Clients reported home layout and accessibility as safety concerns. Aides and managers reported that client family members can make the care job more challenging. The aide-client connection was affected by communication style, family and HC agency support, allotted care time, and job task boundaries. Interventions that address the safety of both clients and aides can influence HC job satisfaction and retention.

Does Connectedness Matter? The Association Between Mutuality and Job Satisfaction Among Home Health Aides Caring for Adults With Heart Failure.

Home health aides (HHAs) provide care to many adults with heart failure (HF) in the home. As the demand for HHAs increases, there is a need to promote HHAs' job satisfaction and retention. In this cross-sectional community-partnered study, we examined whether mutuality (e.g., quality of the HHA-patient relationship), is associated with job satisfaction among HHAs caring for adults with HF. Mutuality was assessed with the Mutuality Scale, which measures overall mutuality and its four domains (reciprocity, love and affection, shared pleasurable activities, and shared values). Our final sample of 200 HHAs was primarily female. The mean overall mutuality score was 2.92 out of 4 (SD 0.79). In our final model, overall mutuality and each of the four domains were associated with increased job satisfaction; however, only the shared pleasurable activities domain was significant (aPR: 1.15 [1.03-1.32]). Overall, mutuality may play a role in promoting job satisfaction among HHAs.