Racial and Ethnic Differences in Hospice Use Among Medicaid-Only and Dual-Eligible Decedents.

Importance: Hospice care enhances quality of life for people with terminal illness and is most beneficial with longer length of stay (LOS). Most hospice research focuses on the Medicare-insured population. Little is known about hospice use for the racially and ethnically diverse, low-income Medicaid population. Objective: To compare hospice use and hospice LOS by race and ethnicity among Medicaid-only individuals and those with dual eligibility for Medicare and Medicaid (duals) in the Connecticut Medicaid program who died over a 4-year period. Design, Setting, and Participants: This retrospective population-based cohort study used Medicaid and traditional Medicare enrollment and claims data for 2015 to 2020. The study included Connecticut Medicaid recipients with at least 1 of 5 most common hospice diagnoses who died from 2017 to 2020. Exposure: Race and ethnicity. Main Outcomes and Measures: Hospice use (yes/no) and hospice LOS (1-7 days vs ≥8 days.) Covariates included sex, age, and nursing facility stay within 60 days of death. Results: Overall, 2407 and 23 857 duals were included. Medicaid-only decedents were younger (13.8% ≥85 vs 52.5%), more likely to be male (50.6% vs 36.4%), more racially and ethnically diverse (48.7% non-Hispanic White vs 79.9%), and less likely to have a nursing facility stay (34.9% vs 56.1%). Race and ethnicity were significantly associated with hospice use and LOS in both populations: non-Hispanic Black and Hispanic decedents had lower odds of using hospice than non-Hispanic White decedents, and Hispanic decedents had higher odds of a short LOS. In both populations, older age and female sex were also associated with more hospice use. For duals only, higher age was associated with lower odds of short LOS. For decedents with nursing facility stays, compared with those without, Medicaid-only decedents had higher odds of using hospice (odds ratio [OR], 1.49; 95% CI, 1.24-1.78); duals had lower odds (OR, 0.60; 95% CI, 0.57-0.63). Compared with decedents without nursing facility stays, duals with a nursing facility stay had higher odds of short LOS (OR, 2.63; 95% CI, 2.43-2.85). Conclusions and Relevance: Findings raise concerns about equity and timing of access to hospice for Hispanic and non-Hispanic Black individuals in these understudied Medicaid populations. Knowledge about, access to, and acceptance of hospice may be lacking for these low-income individuals. Further research is needed to understand barriers to and facilitators of hospice use for people with nursing facility stays.

The Case for Conducting Pragmatic Dementia Care Trials in Medicaid Home and Community-Based Service Settings.

Medicaid-funded home and community-based services (HCBSs) reach large numbers of individuals living with dementia who would otherwise reside in nursing homes with Medicaid funding. Medicaid HCBSs also often augment care provided by family and other informal caregivers to individuals living with dementia. Although Medicaid-funded HCBSs are offered in most states in lieu of nursing home care, they have been largely overlooked as health care system partners for implementation and testing of evidence-based dementia care interventions using embedded pragmatic clinical trial (ePCT) designs. In this article, we make the case for the importance of Medicaid-funded HCBSs as dementia care ePCT partners because of the volume of vulnerable clients with dementia served and the potential positive impacts that evidence-based dementia care programs can have on clients and their informal caregivers. This article first characterizes the Medicaid HCBS setting in terms of populations served and organizational arrangements across states. We then characterize strengths and potential limitations presented by Medicaid HCBSs as settings within which to implement dementia care ePCTs, using as a conceptual framework the Pragmatic-Explanatory Continuum Indicator Summary (PRECIS-2) tool and its domains. We draw on our experiences implementing the Care of Persons with Dementia in their Environments (COPE) program in a statewide Medicaid HCBS setting to highlight how these potential ePCT partners can help optimize pragmatic approaches to several PRECIS-2 domains. We found that partners are especially effective in implementing pragmatic ways to determine eligibility for evidence-based dementia care programs; assist with recruitment of eligible individuals; incorporate dementia care interventions into the range of existing HCBSs; and track outcomes relevant to persons living with dementia, caregivers, HCBS providers, and Medicaid insurance stakeholders. We conclude with recommendations for researchers, potential ePCT partners, and policymakers to help facilitate the growth of dementia care ePCTs in Medicaid HCBS settings across the United States.

Association of Race, Ethnicity, Education, and Neighborhood Context With Dementia Prevalence and Cognitive Impairment Severity Among Older Adults Receiving Medicaid-Funded Home and Community-Based Services.

OBJECTIVE: While racial, ethnic, and socioeconomic group disparities in cognitive impairment and dementia prevalence are well-documented among community-dwelling older adults, little is known about these disparity trends among older adults receiving Medicaid-funded home- and community-based services (HCBS) in lieu of nursing home admission. The authors determined how dementia prevalence and cognitive impairment severity compare by race, ethnicity, educational attainment, and neighborhood context in a Medicaid HCBS population. DESIGN/SETTING: A cross-sectional study in Connecticut. PARTICIPANTS: Adults age ≥65 in the HCBS program, January-March 2019 (N = 3,520). MEASUREMENTS: The data source was Connecticut's HCBS program Universal Assessment tool. The authors employed two outcomes: Cognitive Performance Scale (CPS2), a 9-point measure ranging from cognitively intact-very severe impairment; and presence or not of either diagnosed dementia or CPS2 score ≥4 (major impairment). Neighborhood context was measured using the Social Vulnerability Index (SVI). RESULTS: Cohort characteristics: 75.7% female; mean(SD) age = 79.1(8.2); Non-Hispanic White = 47.8%; Hispanic = 33.6%; Non-Hispanic Black = 15.9%. Covariate-adjusted multivariate analyses revealed no dementia/major impairment prevalence differences among White, Black, and Hispanic individuals, but impairment severity was greater among Hispanic participants (b = 0.22; p = 0.02). People with more than HS education had less severe impairment (b = -0.12; p <0.001) and lower likelihood of dementia/major impairment (AOR = 0.61; p <0.001). Dementia/major impairment likelihood and impairment severity were greater in less socially vulnerable neighborhoods. CONCLUSION: Racial and ethnic group differences in cognitive impairment are less pronounced in Medicaid-funded HCBS cohorts than in other community-dwelling older adult cohorts. SVI results suggest that, among other possible explanations, older adults with dementia may move to lower social vulnerability neighborhoods where supportive family members reside.

A Profile of Black and Latino Older Adults Receiving Care in Nursing Homes: 2011-2017.

OBJECTIVE: To identify if disparate trends in the access and use of nursing home (NH) services among Black and Latino older adults compared with White older adults persist. Access was operationalized as the NHs that served Black, Latino, and White residents. Use was operationalized as the utilization of NH services by Black, Latino, and White residents. DESIGN: This was an observational study analyzing facility-level data from LTCfocus for 2011 to 2017. SETTING AND PARTICIPANTS: All NH residents present in US NHs participating in the Centers for Medicare and Medicaid Services program on the first Thursday in April in the years 2011 to 2017. NHs with fewer than 4500 bed-days per year are excluded in the LCTfocus dataset. Black, Latino, and White were the racial/ethnic groups of interest. METHODS: We calculated the mean percentage of each racial/ethnic group in NHs (Black, Latino, White) annually along with the number of NHs that provided care for these groups. We conducted a simple trend analysis using ordinary least squares to estimate the change in NH access and use by racial/ethnic group over time. RESULTS: Our NH sample ranged from 15,564 in 2011 to 14,956 in 2017. Latino residents' use of NHs increased by 20.47% and Black residents increased by 11.42%, whereas there was a 1.36% decrease in White residents' use of NHs. In this 7-year span, there was a 4.44% and 6.41% decline in the number of NHs that serve any Black and Latino older adults, respectively, compared with a 2.26% decline in NHs that serve only White older adults (access). CONCLUSIONS AND IMPLICATIONS: Our findings reveal a continued disproportionate rise in Black and Latino older adults' use of NHs while the number of NHs that serve this population have declined. This work can inform federal and state policies to ensure access to long-term care services and supports in the community for all older adults and prevent inappropriate NH closures.

Moving Back Into the Community: Obstacles for People With an Acquired Brain Injury or Physical Disability.

OBJECTIVES: To investigate transitions from long-term institutional care to the community in people with an acquired brain injury (ABI) or a physical disability (PD). Secondary objectives were to identify barriers in each group. DESIGN: Retrospective observational study based on a person-centered plan and structured interviews to identify potential barriers. SETTING AND PARTICIPANTS: Long-term institutional care; 2954 Medicaid participants younger than 65 interested in community living. METHODS: Analysis with SPSS 25 of 445 people with an ABI and 2509 with a PD living in long-term care between December 2008 and November 2017. The main outcome was transition to the community. Secondary measures identified specific barriers such as consumer engagement, gender, and age. RESULTS: Of the 2954 total cases, 1810 (61.3%) transitioned to the community; 57.5% of the ABI group (n = 256) and 61.9% of the PD group (n = 1554) transitioned. Although the PD group transitioned at a slightly higher rate, no significant association was found between the program (ABI or PD) and the likelihood of transitioning [χ2 (df = 1) = 3.096, P = .078]. Overall, in the ABI group, difficulties with the funding program, OR = 0.373 ± 0.238, and other individuals, OR = 0.396 ± 0.344, decreased the odds of transitioning more than other challenges, whereas lack of consumer engagement, OR = 0.659 ± 0.100, had the strongest influence on preventing transitions in the PD group. CONCLUSIONS AND IMPLICATIONS: Living in the community improves quality of life and decreases costs. No previous studies have focused on the major obstacles for 2 specific groups, those with an ABI and those with a PD. Identifying transition rates and specific barriers for different groups is an important step to developing systems that will overcome these obstacles. In addition, the equivalent transition rates between these groups highlights the benefit of increased funding and range of services for those with complex needs and support requirements.

Cost-Benefit Analysis of the COPE Program for Persons Living With Dementia: Toward a Payment Model.

BACKGROUND AND OBJECTIVES: There is a critical need for effective interventions to support quality of life for persons living with dementia and their caregivers. Growing evidence supports nonpharmacologic programs that provide care management, disease education, skills training, and support. This cost-benefit analysis examined whether the Care of Persons with Dementia in their Environments (COPE) program achieves cost savings when incorporated into Connecticut's home- and community-based services (HCBS), which are state- and Medicaid-funded. RESEARCH DESIGN AND METHODS: Findings are based on a pragmatic trial where persons living with dementia and their caregiver dyads were randomly assigned to COPE with HCBS, or HCBS alone. Cost measures included those relevant to HCBS decision makers: intervention delivery, health care utilization, caregiver time, formal care, and social services. Data sources included care management records and caregiver report. RESULTS: Per-dyad mean cost savings at 12 months were $2 354 for those who received COPE with a mean difference-in-difference of -$6 667 versus HCBS alone (95% CI: -$15 473, $2 734; not statistically significant). COPE costs would consume 5.6%-11.3% of Connecticut's HCBS annual spending limit, and HCBS cost-sharing requirements align with participants' willingness to pay for COPE. DISCUSSION AND IMPLICATIONS: COPE represents a potentially cost-saving dementia care service that could be financed through existing Connecticut HCBS. HCBS programs represent an important, sustainable payment model for delivering nonpharmacological dementia interventions such as COPE.

Clinical trial testing in-home multidisciplinary care management for older adults with cognitive vulnerability: Rationale and study design.

Care management approaches are being widely tested in the Medicare-eligible population to manage chronic conditions, but few have focused on cognitive vulnerability as the pathway to optimizing independence in the community-dwelling older population. Cognitive vulnerability refers to living with dementia, depression, and/or a history of delirium. Many studies have shown that cognitive vulnerability is associated with poor health-related outcomes in community-dwelling older adults, raising the health policy importance of finding evidence-based approaches to improve outcomes for this target population. Moreover, very little is known about effects of care management approaches in the rapidly growing Medicare Advantage population. In response to these knowledge gaps, we are testing the efficacy of an in-home, nurse practitioner-led care management team for adults age ≥ 65 with cognitive vulnerability in a Medicare Advantage population. Older adults and family caregivers randomized either to this multidisciplinary care management team, or to a telephonic care management program routinely offered by our Medicare Advantage partner. The intervention period is 12 months and the primary outcome is any emergency department visit or hospitalization over the 12-month period. In this paper, we report on the rationale for testing a multidisciplinary care management intervention for this target population, and explain how a university-based research team collaborated with a Medicare Advantage insurer to conceptualize and implement the clinical trial. We also provide details on study design, and on components of the in-home and telephonic care management interventions. We conclude with a synopsis of recruitment progress along with selected baseline characteristics of the study cohort.

Racial Differences in Choice and Control Among Older Adults: Results From Connecticut's Money Follows the Person Rebalancing Demonstration.

We examined racial differences in determinants of choice and control in daily activities and service coordination for a sample of White and Black participants in the Connecticut Money Follows the Person (MFP) Rebalancing Demonstration. Within-group analyses were conducted to understand factors that contribute to choice and control among participants. While no disparities were found in the odds of reporting choice and control, our findings show that White participants with mental health challenges, who lived with family, and had more functional impairments and Black participants with engagement transition challenges were less likely to have choice and control over daily activities. Determinants varied by race for choice in service coordination. Findings indicate a need for initiatives to target different factors for White and Black MFP participants to optimize opportunities for choice and control after returning to community living.

Progress and Policy Opportunities in Family Caregiver Assessment: Results From a National Survey.

Family caregivers play an essential role in long-term services and supports (LTSS). Despite numerous calls for robust caregiver assessment policies to determine needs and treat them as partners in care planning, there has been limited information about whether or how states assess caregiver needs and strengths, or use caregiver information. Using cross-sectional survey data from the 2015 Process Evaluation of the Older Americans Act National Family Caregiver Support Program (NFCSP), this study analyzes caregiver assessment policies and practices in 54 State Units on Aging, 619 Area Agencies on Aging, and 642 local service providers. It examines whether and for what purposes caregiver assessments are used, what domains are included, and how well current policies conform to recommended practice. It also recommends that policy makers who influence NFCSP and other LTSS programs develop caregiver assessment practices using a multidimensional framework including more caregiver-focused domains and utilizing assessment data to measure program outcomes.

Differences in Living Arrangements Among Older Adults Transitioning Into the Community: Examining the Impact of Race and Choice.

The federal Money Follows the Person Rebalancing Demonstration program allows nursing home residents to use Medicaid funds for home and community-based services rather than institutional care. Race, choice in housing, and challenges faced prior to transitioning may impact living arrangements following a discharge into the community. This study examines the influence of these factors on living arrangements for 659 program participants age 65 or older. Unmarried Blacks and people with financial or legal challenges are less likely to live with a live-in caregiver or in supervised housing compared with unmarried Whites. Race did not determine living arrangements among married participants, but housing transition challenges did. Findings inform policies targeting nursing home rebalancing efforts by highlighting racial diversity in living arrangements and emphasizing the need for affordable, accessible housing options for older adults of any race seeking to live in the community rather than remain in an institutional setting.

Translation of the Care of Persons with Dementia in their Environments (COPE) intervention in a publicly-funded home care context: Rationale and research design.

BACKGROUND: Dementia is the leading cause of loss of independence in older adults worldwide. In the U.S., approximately 15 million family members provide care to relatives with dementia. This paper presents the rationale and design for a translational study in which an evidence-based, non-pharmacologic intervention for older adults with dementia and family caregivers (CGs) is incorporated into a publicly-funded home care program for older adults at risk for nursing home admission. METHODS: The 4-month Care of Persons with Dementia in their Environments (COPE) intervention is designed to optimize older adults' functional independence, and to improve CG dementia management skills and health-related outcomes. COPE features 10 in-home occupational therapy visits, and 1 in-home visit and 1 telephone contact by an advanced practice nurse. COPE was deemed efficacious in a published randomized clinical trial. In the present study, older adults with dementia enrolled in the Connecticut Home Care Program for Elders (CHCPE) and their CGs are randomly assigned to receive COPE plus their ongoing CHCPE services, or to continue receiving CHCPE services only. OUTCOMES: The primary outcome for older adults with dementia is functional independence; secondary outcomes are activity engagement, quality of life, and prevention or alleviation of neuropsychiatric symptoms. CG outcomes include perceived well-being and confidence in using activities to manage dementia symptoms. Translational outcomes include net financial benefit of COPE, and feasibility and acceptability of COPE implementation into the CHCPE. COPE has the potential to improve health-related outcomes while saving Medicaid waiver and state revenue-funded home care program costs nationwide.

Connecticut's 'Money Follows The Person' Yields Positive Results For Transitioning People Out Of Institutions.

A centerpiece of federal and state efforts to rebalance long-term services and supports to enhance consumer choice and contain costs, the federal Money Follows the Person Rebalancing Demonstration helps qualified individuals living in institutions make the transition to life in the community. The Connecticut Money Follows the Person program is an unusually rich source of data, with information on the 2,262 people who transitioned to the community under that state's program during 2008-14. Responses to participant surveys completed before and six, twelve, and twenty-four months after transition indicate that, for the majority of respondents who remained in the community, quality of life and life satisfaction improved significantly after transition, and they stayed high. About half of the participants visited hospitals or emergency departments after transition; however, only 14 percent had returned to an institution one year after transition. Predictors of reinstitutionalization included some not previously observed: mental health disability, difficulties with family members before transition, and not exercising choice and control in daily life. These and other findings suggest multiple ways in which policy makers can target efforts to strengthen transition programs that can meaningfully improve people's lives while containing costs.

Medicare and Medicaid users speak out about their health care: the real, the ideal, and how to get there.

To inform the design of an integrated health and social service program that will better coordinate care for individuals dually eligible for Medicare and Medicaid, a qualitative study was conducted using 13 focus groups. Participants consisted of a purposeful sample of dually eligible individuals (1) aged 65+ years (8 focus groups: N=71), and (2) aged 18-64 years with disabilities (5 focus groups: N=45), recruited in collaboration with the Connecticut Legislature's Medical Assistance Program Oversight Council and numerous community-based agencies across the state. Older adult participants included nursing home residents, community-dwelling healthy individuals and individuals with chronic illness or disability, family members of individuals with chronic illness or disability, and 1 community-dwelling group of Spanish-speakers. Younger adult participants included persons with physical, intellectual/developmental, and/or mental health disabilities, and parents, case managers, nurses, and residential managers of persons with intellectual/developmental disabilities. Through the constant comparative method, results clustered in 4 domains: current experiences, care coordination, consumer protection, and elements of an ideal health care program. Significant findings include difficulty finding providers who accept Medicare/Medicaid, medication management, age and racial/ethnic discrimination, and care coordination. Findings highlight the policy implications of designing a person-centered, coordinated dual coverage system. Desired elements of an ideal system include greater choice in providers of all types, including culturally competent medical and home care providers, increased coordination among medical providers and between medical and home care/social service providers, and a prominent role for pharmacists in counseling participants and in serving as part of care coordination teams. (Population Health Management 2015;18:123-130).

Long-term supports and services planning for the future: implications from a statewide survey of Baby Boomers and older adults.

PURPOSE OF THE STUDY: Little is known about adults' future planning for long-term supports and services (LTSS), and no studies have examined how LTSS planning compares between Baby Boomers and their parents' generation. The primary aim of this study is to examine the potential influences of birth cohort and gender on LTSS planning. Drawing on Andersen's Behavioral Model of Health Services Use, birth cohort and gender are viewed as predisposing characteristics, and several additional predisposing, enabling, and need characteristics are included as independent variables. DESIGN AND METHODS: Cross-sectional design; data obtained from a statewide survey of 2,522 randomly selected Baby Boomers (born between 1946 and 1964) and older adults (born before 1946). RESULTS: Two thirds of respondents expected to need LTSS, but few reported saving for such services. Controlling for other independent variables, compared with older adults, Baby Boomers were significantly more likely to plan to move to an apartment, live in a retirement community or assisted living, and live with an adult child. Conversely, women were more likely than men to report planning to use specific LTSS such as homecare, but specific LTSS plans did not vary by birth cohort. IMPLICATIONS: Policymakers and providers should prepare for a shift in community planning to accommodate the changing plans and expectations of Baby Boomers, large numbers of whom plan to age in existing homes and retirement communities, or live with adult children, with increasing demand for informal family support. The LTSS industry should also adapt to meet the need for formal services, which will likely continue to grow.

Transition from home care to nursing home: unmet needs in a home- and community-based program for older adults.

A major effort is under way nationally to shift long-term care services from institutional to home- and community-based settings. This article employs quantitative and qualitative methods to identify unmet needs of consumers who transition from a statewide home- and community-based service program for older adults to long-term nursing home residence. Administrative data, care manager notes, and focus group discussions identified program service gaps that inadequately accommodated acute health problems, mental health issues, and stressed family caregivers; additional unmet needs highlighted an inadequate workforce, transportation barriers, and limited supportive housing options. National and state-level policy implications are considered.

Are baby boomers who care for their older parents planning for their own future long-term care needs?

A rapidly expanding number of baby boomers provide care to aging parents. This study examines associations between caregiver status and outcomes related to awareness and anticipation of future long-term care (LTC) needs using 2007 Connecticut Long-Term Care Needs Assessment survey data. Baby boomers who were adult child caregivers (n = 353) versus baby boomers who were not (n = 1242) were more likely to anticipate some future LTC needs and to have considered certain financing strategies. Although baby boomer adult child caregivers more readily anticipate some future LTC needs, they are not taking specific actions. It is important to address the need for public education directed toward those who are currently (or have recently completed) caring for aging parents.

Individual decision making in the non-purchase of long-term care insurance.

PURPOSE: Although prior research suggests that economic, behavioral, and psychosocial factors influence decisions not to purchase long-term care insurance, few studies have examined the interplay among these factors in depth and from the consumer's point of view. This study was intended to further illuminate these considerations, generate hypotheses about non-purchasing decisions, and inform the design of policies that are responsive to concerns and preferences of potential purchasers. DESIGN AND METHOD: Qualitative study using 32 in-depth interviews and 6 focus groups, following a grounded theory approach. RESULTS: Five themes characterize decisions not to purchase long-term care insurance: (a) the determination that a policy is "too costly" reflects highly individualized and complex trade-offs not solely economic in nature, (b) non-purchasers are skeptical about the viability and integrity of private insurance companies and seek an unbiased source of information, (c) family dynamics play an important role in insurance decisions, (d) contemplating personal risk for long-term care triggers psychological responses that have implications for decision making, and (e) non-purchasers feel inadequately informed and overwhelmed by the process of deciding whether to purchase long-term care insurance. IMPLICATIONS: States are seeking to offset escalating Medicaid long-term care expenditures through a variety of policy mechanisms, including stimulating individual purchase of long-term care insurance. Findings suggest that economic incentives such as lowering premiums will be necessary but not sufficient to attract appropriate candidates. Attention to behavioral and psychosocial factors is essential to designing incentives that are responsive to concerns and preferences of potential purchasers.

A broader view of family caregiving: effects of caregiving and caregiver conditions on depressive symptoms, health, work, and social isolation.

OBJECTIVES: Informal caregivers provide the majority of long-term care. This study examined six health and psychosocial outcomes of caregiving, in the context of multiple characteristics of the caregiving situation, in a representative, statewide sample. METHODS: Data came from 4,041 respondents to the 2007 Connecticut Long-Term Care Needs Assessment. Analyses investigated whether caregiving negatively affects depressive symptoms, health, missing work, and social isolation. Logistic regressions tested the independent effects of caregiver characteristics and conditions of the caregiving situation on these health and psychosocial outcomes. RESULTS: Caregivers rate their health better than noncaregivers and do not report more depressive symptoms or social isolation. Living with the care receiver, inadequate income, and care receivers' unmet need for community-based long-term care services relate to multiple negative outcomes. Care receiver memory problems and caregiver/care receiver relationship do not relate to health or psychosocial outcomes when these other factors are considered. DISCUSSION: Caregiving per se does not lead to symptoms of depression, poor health, or social isolation. Many caregivers do need supports in training and education, respite, and physical and mental health care. Such programs should provide outreach to caregivers facing specific stressful conditions, as not all caregivers experience negative consequences.