Paid Care for People with Functional Impairment and Serious Illness: Results from the Health and Retirement Study.

BACKGROUND: Paid caregivers (e.g., home health aides) care for individuals living at home with functional impairment and serious illnesses (health conditions with high risk of mortality that impact function and quality of life). OBJECTIVE: To characterize those who receive paid care and identify factors associated with receipt of paid care in the context of serious illness and socioeconomic status. DESIGN: Retrospective cohort study. PARTICIPANTS: Community-dwelling participants ≥ 65 years enrolled in the Health and Retirement Study (HRS) between 1998 and 2018 with new-onset functional impairment (e.g., bathing, dressing) and linked fee-for-service Medicare claims (n = 2521). MAIN MEASURES: Dementia was identified using HRS responses and non-dementia serious illness (e.g., advanced cancer, end-stage renal disease) was identified using Medicare claims. Paid care support was identified using HRS survey report of paid help with functional tasks. KEY RESULTS: While about 27% of the sample received paid care, those with both dementia and non-dementia serious illnesses in addition to functional impairment received the most paid care (41.7% received ≥ 40 h of paid care per week). In multivariable models, those with Medicaid were more likely to receive any paid care (p < 0.001), but those in the highest income quartile received more hours of paid care (p = 0.05) when paid care was present. Those with non-dementia serious illness were more likely to receive any paid care (p < 0.001), but those with dementia received more hours of care (p < 0.001) when paid care was present. CONCLUSIONS: Paid caregivers play a significant role in meeting the care needs of those with functional impairment and serious illness and high paid care hours are common among those with dementia in particular. Future work should explore how paid caregivers can collaborate with families and healthcare teams to improve the health and well-being of the seriously ill throughout the income spectrum.

Prevalence and predictors of incident ADRD diagnosis following a Medicare home health episode.

INTRODUCTION: Home health (HH) may be an important source of care for those with early-stage/undiagnosed Alzheimer's Disease and Related Dementias (ADRD), but little is known regarding prevalence or predictors of incident ADRD diagnosis following HH. METHODS: Using 2010-2012 linked Master Beneficiary Summary File (MBSF) and HH assessment data for 40,596 Medicare HH patients, we model incident ADRD diagnosis within 1 year of HH via multivariable logistic regression. RESULTS: Among HH patients without diagnosed ADRD, 10% received an incident diagnosis within 1 year. In adjusted models, patients were three times more likely to receive an incident ADRD diagnosis if they had HH clinician-reported impaired overall cognition (compared to patients without reported impairment) and twice as likely if they were community-referred (compared to hospital-referred patients). DISCUSSION: There is a pressing need to develop tailored HH clinical pathways and protect access to community-referred HH to support community-living older adults with early-stage/undiagnosed ADRD.

The Experience of Homebound Older Adults During the COVID-19 Pandemic.

BACKGROUND: Homebound older adults have heightened risks for isolation and negative health consequences, but it is unclear how COVID-19 has impacted them. We examine social contact and mood symptoms among previously homebound older adults during the COVID-19 pandemic. DESIGN/SETTING: Cross-sectional analysis using data from the National Health and Aging Trends Study (NHATS), a nationally-representative longitudinal study of aging in the USA. PARTICIPANTS: A total of 3,112 community-dwelling older adults in 2019 who completed the COVID-19 survey in the summer/fall of 2020. MEASUREMENTS: Homebound status was defined via self-report as rarely/never leaving home or leaving the house with difficulty or help in the prior month. We measured limited social contact during COVID-19 (in-person, telephone, video or email contacts

Awareness, Acceptance, Avoidance: Home Care Aides' Approaches to Death and End-of-Life Care.

Death and dying are woven throughout the work of home care aides, and yet the care they provide at the end of life (EOL) remains poorly understood. This is due in part to the multiple circumstances under which aides provide EOL care. In this paper, we elucidate the EOL care experiences of aides working in home care agencies in New York City. We conducted in-depth interviews with 29 home care aides, and we analyzed these data using inductive, team-based methods. Our findings show that aides may not be aware of or accept a client's EOL status, and they may avoid EOL care. These conditions shape EOL care, and we detail the committed forms of care aides provide when they are aware and accepting. We recommend improved training, support systems, and policy change to enhance aides' contributions to EOL care, while protecting aides' health and well-being.

Homebound Status and the Critical Role of Caregiving Support.

The homebound population relies on both paid and family caregivers to meet their complex care needs. In order to examine the association between intensity of caregiving support and leaving the home, we identified a population of community-dwelling, homebound Medicare beneficiaries age ≥65 (n = 1,852) enrolled in the 2015 National Health and Aging Trends Study and measured the support they received from paid and family caregivers. Those who had ≥20 h of caregiving support per week had 50% less odds of being "exclusively homebound" (rarely or never leave home) (OR 0.56, p < .01). Policies that facilitate increased support for family caregivers and better access to paid caregivers may allow homebound individuals who would otherwise be isolated at home to utilize existing community-based long-term care services and supports.

Meeting the Mental Health Needs of the Homebound: A Psychiatric Consult Service Within a Home-Based Primary Care Program.

The growing population of homebound adults increasingly receives home-based primary care (HBPC) services. These patients are predominantly frail older adults who are homebound because of multiple medical comorbidities, yet they often also have psychiatric diagnoses requiring mental health care. Unfortunately, in-home psychiatric services are rarely available to homebound patients. To address unmet psychiatric need among the homebound patients enrolled in our large academic HBPC program, we piloted a psychiatric in-home consultation service. During our 16-month pilot, 10% of all enrolled HBPC patients were referred for and received psychiatric consultation. Depression and anxiety were among the most common reasons for referral. To better meet patients' medical and psychiatric needs, HBPC programs need to consider strategies to incorporate psychiatric services into their routine care plans.

The critical role of social workers in home-based primary care.

The growing homebound population has many complex biomedical and psychosocial needs and requires a team-based approach to care (Smith, Ornstein, Soriano, Muller, & Boal, 2006). The Mount Sinai Visiting Doctors Program (MSVD), a large interdisciplinary home-based primary care program in New York City, has a vibrant social work program that is integrated into the routine care of homebound patients. We describe the assessment process used by MSVD social workers, highlight examples of successful social work care, and discuss why social workers' individualized care plans are essential for keeping patients with chronic illness living safely in the community. Despite barriers to widespread implementation, such social work involvement within similar home-based clinical programs is essential in the interdisciplinary care of our most needy patients.

Home Care Workers Providing Person-Centered Care to People With Dementia.

Person-centered care for people living with dementia has been associated with improved functional ability and quality of life, yet little is known about person-centered care in the home settings. Our objective was to explore home care worker perspectives on providing person-centered care for their clients living with dementia. Using secondary qualitative analysis of 22 semi-structured interviews with home care workers, we identified themes related to the Dementia Initiative's person-centered dementia care framework (Initiative, 2013). We found that home care workers acknowledged their client's personhood while also advocating for their needs. However, home care workers encountered barriers to providing person-centered care, including role limitations and challenging dynamics with other home care workers and family caregivers. This analysis can inform further approaches to better integrate home care workers in person-centered healthcare teams and improve how the needs of people living with dementia are identified and met in the home.

"It shouldn't be like this": Family caregivers navigating insurance for family members with dementia.

BACKGROUND: Almost 11.3 million family caregivers of people with dementia must navigate the health insurance landscape to meet the complex medical and long-term care needs of their family members. This study explores factors that influence family caregivers' decisions about insurance and how these choices affect the care and support people with dementia receive. METHODS: Semi-structured interviews were conducted from June 2022 to January 2023 with 15 family caregivers of people with dementia dual eligible for Medicaid and Medicare and enrolled in home-based primary care in New York City. A set of open-ended questions were asked exploring caregivers' perspectives on navigating insurance plans. Interviews were recorded, transcribed, and analyzed using thematic analysis with both deductive and inductive coding. RESULTS: Analysis revealed three major themes: (1) challenges of Medicaid enrollment, (2) making do with existing insurance, and (3) mistrust of the insurance system. Initial enrollment in Medicaid compounded the stress of adjusting to caregiving. The enrollment process was impacted by clinical factors, financial factors, and input from providers and social workers; however, caregivers could not identify a centralized system for obtaining insurance information and support. Once Medicaid was in place, participants described advocating on behalf of their family member within the constraints of their current insurance plans (Medicare and Medicaid) and ensuring they had the necessary knowledge to understand their family member's coverage. Participants voiced a need for ongoing vigilance to ensure their family members received needed care and support. CONCLUSION: The challenges family caregivers experience when navigating insurance for their family members with dementia contribute to caregiver burden. Robust and centralized professional support for family members both immediately after a family member's dementia diagnosis and as the disease progresses could increase caregivers' capacity to make insurance decisions that best support their family members with dementia.

Drivers of Community-Entry Home Health Care Utilization Among Older Adults.

OBJECTIVES: A growing proportion of Medicare home health (HH) patients are "community-entry," meaning referred to HH without a preceding hospitalization. We sought to identify factors that predict community-entry HH use among older adults to provide foundational information regarding care needs and circumstances that may prompt community-entry HH referral. DESIGN: Nationally representative cohort study. SETTING AND PARTICIPANTS: Health and Retirement Study (HRS) respondents who were aged ≥65 years, community-living, and enrolled in Medicare between 2012 and 2018 (n = 11,425 unique individuals providing 27,026 two-year observation periods). METHODS: HRS data were linked with standardized HH patient assessments. Community-entry HH utilization was defined as incurring one or more HH episode with no preceding hospitalization or institutional post-acute care stay (determined via assessment item indicating institutional care within 14 days of HH admission) within 2 years of HRS interview. Weighted, multivariable logistic regression was used to model community-entry HH use as a function of individual, social support, and community characteristics. RESULTS: The overall rate of community-entry HH utilization across observation periods was 13.4%. Older adults had higher odds of community-entry HH use if they were Medicaid enrolled [adjusted odds ratio (aOR) = 1.49, P = .001], had fair or poor overall health (aOR = 1.48, P < .001), 3+ activities of daily living limitations (aOR = 1.47, P = .007), and had fallen in the past 2 years (aOR = 1.43, P < .001). Compared with those receiving no caregiver help, individuals were more likely to use community-entry HH if they received family or unpaid help only (aOR = 1.81, P < .001), both family and paid help (aOR = 2.79, P < .001), or paid help only (aOR: 3.46, P < .001). CONCLUSIONS AND IMPLICATIONS: Findings indicate that community-entry HH serves a population with long-term care needs and coexisting clinical complexity, making this an important setting to provide skilled care and prevent avoidable health care utilization. Results highlight the need for ongoing monitoring of community-entry HH accessibility as this service is a key component of home-based care for a high-need subpopulation.

Variation in Hospice Aide Care by Residential Setting.

Background: Hospice care frequently includes hands-on care from hospice aides, but the need for hospice aide care may vary in residential settings (e.g., assisted livings and nursing homes). Objectives: The objective of this study is to compare hospice aide use and factors associated with use across residential settings. Design: This longitudinal cohort study used data from Medicare beneficiaries in the United States enrolled in the Medicare Current Beneficiary Survey (MCBS) who died between 2010 and 2019 and had hospice claims and available residential setting data in MCBS (n = 1,915). Analysis: Decedent hospice aide use was compared by residential settings; multivariable models controlling for sociodemographic, clinical/functional, and hospice characteristics examined factors associated with hospice aide care in different residential settings. Results: Hospice aide visits were least common in the community setting (64.4% vs. 76.6% vs. 72.6% with any hospice aide visits in community, assisted living, and nursing home, respectively, p = 0.001). In adjusted models, factors associated with hospice aide visits did not significantly differ by residential settings. Conclusions: Despite staff providing hands-on support in assisted livings and nursing homes, hospice aide visits were more common in residential as opposed to community settings, and factors associated with hospice aide visits were similar among settings. To maximize the potentially positive impact of hospice aides on overall care, additional work is needed to understand when hospice aides are used and how hospice aides collaborate with families and care teams. This will help to ensure that hospice care is appropriately tailored to individual care needs in all residential settings.

Paid Caregiving in Dementia Care Over Time: Paid Caregiver, Family Caregiver, and Geriatrician Perspectives.

BACKGROUND AND OBJECTIVES: As long-term care increasingly moves from facilities to the community, paid caregivers (e.g., home health aides, other home care workers) will play an increasingly important role in the care of people with dementia. This study explores the paid caregiver role in home-based dementia care and how that role changes over time. RESEARCH DESIGN AND METHODS: We conducted individual, longitudinal interviews with the paid caregiver, family caregiver, and geriatrician of 9 people with moderate-to-severe dementia in the community; the 29 total participants were interviewed on average 3 times over 6 months, for a total of 75 interviews. Interviews were recorded, transcribed, and analyzed with structured case summaries and framework analysis. RESULTS: Paid caregivers took on distinct roles in the care of each client with dementia. Despite changes in care needs over the study period, roles remained consistent. Paid caregivers, family caregivers, and geriatricians described the central role of families in driving the paid caregiver role. Paid and family caregivers collaborated in the day-to-day care of people with dementia; paid caregivers described their emotional relationships with those they cared for. DISCUSSION AND IMPLICATIONS: Rather than simply providing functional support, paid caregivers provide nuanced care tailored to the needs and preferences of not only each person with dementia (i.e., person-centered care), but also their family caregivers (i.e., family-centered care). Deliberate cultivation of person-centered and family-centered home care may help maximize the positive impact of paid caregivers on people with dementia and their families.

Clinician Perception of Likelihood of Death in the Next Year Is Associated With 1-Year Mortality and Hospice Use Among Older Adults Receiving Home Health Care.

Background: Given the complex care needs of older adults receiving home health care (HHC), it is important for HHC clinicians to identify those with limited prognosis who may benefit from a transition to hospice care. Objectives: To assess the association between HHC clinician-identified likelihood of death and (1) 1-year mortality, and (2) hospice use. Methods: Prospective cohort study from the National Health and Aging Trends Study (NHATS) waves 2011-2018, linked to the Outcomes and Assessment Information Set (OASIS) HHC assessment and Medicare data among 915 community-dwelling NHATS respondents. HHC clinician-identified likelihood of death/decline was determined using OASIS item M1034. Multivariable logistic regression was used to assess the association between clinician-identified likelihood of death/decline and 1-year mortality and hospice use. Results: HHC clinicians identified 42% of the sample as at increased risk of decline or death. One year mortality was 22.3% (n = 548), and 15.88% (n = 303) used hospice within 12 months of HHC. HHC clinician-perceived likelihood of death/decline was associated with greater odds of 1-year mortality (odds ratio [OR], 6.57; confidence interval (95% CI), 2.56-16.90) and was associated with greater likelihood of hospice use (OR, 1.61; 95% CI, 1.00-2.62). Conclusion: HHC clinician perception of patients' risk of death or decline is associated with 1-year mortality. A better understanding of HHC patients at high risk for mortality can facilitate improved care planning and identification of homebound older adults who may benefit from hospice.

Home Care Worker Continuity in Home-Based Long-Term Care: Associated Factors and Relationships With Client Health and Well-Being.

Background and Objectives: Despite the importance of provider continuity across healthcare settings, continuity among home care workers who provide hands-on long-term care is understudied. This project describes home care worker continuity, identifies factors associated with increased continuity, and examines associations between continuity and client outcomes. Research Design and Methods: We conducted a retrospective cohort study of clients receiving Medicaid-funded home-based long-term care (n = 3,864) using insurance plan and home care agency data from a large nonprofit organization. We estimated home care worker continuity for clients between 6-month clinical assessments using Bice-Boxerman scores. We then used generalized estimating equations to model associations between home care worker continuity and (1) client characteristics (e.g., cognitive impairment), and (2) client functional, health, and psychosocial outcomes. Results: While home care worker continuity was lowest for clients receiving the most weekly care hours, a range of continuity existed across all levels of care need. Those who were male, older, Asian/Pacific Islander/Native American, cognitively impaired, and functionally impaired had lower continuity. Higher home care worker continuity was significantly associated (p < .05) with fewer falls, a higher likelihood of functional improvement/stabilization, and fewer depressive symptoms. Discussion and Implications: The finding that home care worker continuity is associated with the health and well-being of home-based long-term care clients underscores the importance of building high-quality relationships in long-term care. Continued efforts are necessary to understand and advance home care worker continuity and to identify other aspects of the home care experience that benefit those receiving long-term care at home.

"Care for Me, Too": A Novel Framework for Improved Communication and Support Between Dementia Caregivers and the Home Health Care Team.

BACKGROUND AND OBJECTIVES: Identifying and meeting the needs of family and unpaid caregivers (hereafter, "caregivers") during home health (HH) can improve outcomes for patients with Alzheimer's Disease and Related Dementias (ADRD). However, little is known regarding ADRD caregivers' perspectives on communication and support from the HH care team. The study objectives were to identify ADRD caregivers' common support needs during HH and preferences for addressing these needs, to inform future development of an assessment and support intervention. RESEARCH DESIGN AND METHODS: We conducted semistructured key informant interviews with caregivers who had recently assisted a HH patient with ADRD (n = 27). Interview transcripts were analyzed using directed content analysis. RESULTS: Caregivers identified four major support needs: assistance navigating insurance and service coverage, training on nursing tasks, referral to respite care, and information regarding ADRD disease progression. Caregivers described major barriers to communicating these needs, including never being directly asked about their needs and information discontinuity within the HH care team. Incorporating caregiver recommendations, we propose a new model of assessment and support in which the HH care team (a) proactively asks about caregiver needs, (b) presents available supportive resources, (c) solicits information regarding the patient's needs and routine, and (d) stores and shares this information within the medical record. DISCUSSION AND IMPLICATIONS: Findings reveal critical gaps in current patterns of support for ADRD caregivers during HH and suggest directions for an assessment and support intervention that explicitly queries caregivers on their capacity and needs, with content tailored to the HH setting.

Association Between Documented Severe Pain and Cognitive Impairment in Home Health Care Patients: Results from the National Outcome and Assessment Information Set Data.

Background: Despite the growing importance of home health care (HHC) in the care of older adults with cognitive impairment, limited evidence exists about factors associated with documented severe pain among older adults receiving HHC. Methods: This secondary data analysis used a 5% random national sample of the 2017 national Outcome and Assessment Information Set (OASIS) data. Multivariable Poisson regression model was used to examine the association between documented severe pain, cognitive impairment, and a range of sociodemographic, clinical, and cognitive factors. Results: HHC patients (n = 183,038) were mean age 79.7 years, 61.7% female, and 78.6% non-Hispanic White. In multivariable models, cognitive impairment was associated with lower likelihood of documented severe pain (prevalence ratio [PR] = 0.96, confidence interval [CI] = [0.94-0.98]). Other factors independently associated with less documented severe pain included Hispanic ethnicity (PR = 0.92, CI = [0.89-0.95]), the oldest (≥85 years) groups (PR = 0.65, CI = [0.63-0.66]), male patients (PR = 0.83, CI = [0.82-0.85]), those with a formal diagnosis of Alzheimer's Disease Related Dementias (PR = 0.67, CI = [0.65-0.69]), and patients with verbal- and speech-related difficulty (PR = 0.83, CI = [0.80-0.86]). Patients with history of falls (PR = 1.18, CI = [1.16-1.20]), positive screen on the Patient Health Questionnaire-2 (PR = 1.36, CI = [1.31-1.41]), shortness of breath (PR = 1.14, CI = [1.12-1.14]), anxiety daily (PR = 1.16, CI = [1.14-1.18]), and anxiety daily or more often (PR = 1.40, CI = [1.37-1.43]) were more likely to have documented severe pain. Conclusions: HHC patients with cognitive impairment were less likely to have documented severe pain even with a range of sociodemographic, clinical, functional, and cognitive characteristics were considered. These findings may reflect a link between cognitive impairment missed opportunities for clinicians to provide pain management. Tailored interventions are needed to better assess and manage pain in this vulnerable group of HHC patients.

The Need for Stability in Paid Dementia Care: Family Caregiver Perspectives.

Paid caregivers (e.g., home health aides, home care workers) provide essential care to people with dementia living at home; this study explored family caregiver perspectives on the role and impact of paid caregivers in home-based dementia care. We conducted semi-structured interviews with family caregivers (n = 15) of people with advanced dementia who received long-term paid care at home in New York between October 2020 and December 2020. We found that given the vulnerability resulting from advanced dementia, family caregivers prioritized finding the "right" paid caregivers and valued continuity in the individual providing care. The stable paid care that resulted improved outcomes for both the person with advanced dementia (e.g., eating better) and their family (e.g., ability to work). Those advocating for high quality, person-centered dementia care should partner with policymakers and home care agencies to promote the stability of well-matched paid caregivers for people with advanced dementia living at home.

Use of Home-Based Clinical Care and Long-Term Services and Supports Among Homebound Older Adults.

OBJECTIVES: Describe use of home-based clinical care and home-based long-term services and supports (LTSS) using a nationally representative sample of homebound older Medicare beneficiaries. DESIGN: Cross-sectional study. SETTING AND PARTICIPANTS: Homebound, community-dwelling fee-for-service Medicare beneficiaries participating in the 2015 National Health and Aging Trends Study (n = 974). METHODS: Use of home-based clinical care [ie, home-based medical care, skilled home health services, other home-based care (eg, podiatry)] was identified using Medicare claims. Use of home-based LTSS (ie, assistive devices, home modification, paid care, ≥40 hours/wk of family caregiving, transportation assistance, senior housing, home-delivered meals) was identified via self or proxy report. Latent class analysis was used to characterize patterns of use of home-based clinical care and LTSS. RESULTS: Approximately 30% of homebound participants received any home-based clinical care and about 80% received any home-based LTSS. Latent class analysis identified 3 distinct patterns of service use: class 1, High Clinical with LTSS (8.9%); class 2, Home Health Only with LTSS (44.5%); and class 3, Low Care and Services (46.6% homebound). Class 1 received extensive home-based clinical care, but their use of LTSS did not meaningfully differ from class 2. Class 3 received little home-based care of any kind. CONCLUSIONS AND IMPLICATIONS: Although home-based clinical care and LTSS utilization was common among the homebound, no single group received high levels of all care types. Many who likely need and could benefit from such services do not receive home-based support. Additional work focused on better understanding potential barriers to accessing these services and integrating home-based clinical care services with LTSS is needed.

Care Disruptions and End-Of-Life Care Experiences Among Home-Based Primary Care Patients During the COVID-19 Pandemic in New York City: A Retrospective Chart Review.

Background: Research on deaths during COVID-19 has largely focused on hospitals and nursing homes. Less is known about medically complex patients receiving care in the community. We examined care disruptions and end-of-life experiences of homebound patients receiving home-based primary care (HBPC) in New York City during the initial 2020 COVID-19 surge. Methods: We conducted a retrospective chart review of patients enrolled in Mount Sinai Visiting Doctors who died between March 1-June 30, 2020. We collected patient sociodemographic and clinical data and analyzed care disruptions and end-of-life experiences using clinical notes, informed by thematic and narrative analysis. Results: Among 1300 homebound patients, 112 (9%) died during the study period. Patients who died were more likely to be older, non-Hispanic white, and have dementia than those who survived. Thirty percent of decedents had confirmed or probable COVID-19. Fifty-eight (52%) were referred to hospice and 50 enrolled. Seventy-three percent died at home. We identified multiple intersecting disruptions in family caregiving, paid caregiving, medical supplies and services, and hospice care, as well as hospital avoidance, complicating EOL experiences. The HBPC team responded by providing clinical, logistical and emotional support to patients and families. Conclusion: Despite substantial care disruptions, the majority of patients in our study died at home with support from their HBPC team as the practice worked to manage care disruptions. Our findings suggest HBPC's multi-disciplinary, team-based model may be uniquely suited to meet the needs of the most medically and socially vulnerable older adults at end of life during public health emergencies.

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.