Patient Portal Use during Home Health Care at an Academic Health System.

OBJECTIVES: To characterize patient portal use among older adults receiving skilled home health (HH) care. DESIGN: Retrospective cohort study. SETTING AND PARTICIPANTS: Older adults (aged ≥65 years) who received HH care from a large, academic health system between 2017 to 2022 (n = 8409 HH episodes provided to n = 4878 unique individuals). METHODS: We captured individual and HH episode characteristics from the electronic health record and identified specific types and dates of portal use for those with an active patient portal. We calculated the proportion of episodes in which patients engaged in specific patient portal activities (eg, viewing test results, managing appointments, sending messages). We used multivariable logistic regression to model the odds of engaging in each activity as a function of patient and episode characteristics, and charted the timing of patient portal activities across the 60-day HH episode. RESULTS: The patient portal was used by older adults in more than half (58%) of the episodes examined. Among those using their portal account during an HH episode, 84% viewed test results, 77% managed an existing appointment, 72% managed medications, and 55% sent a message to a provider. Adjusted odds of portal use were higher among HH patients who were married (aOR: 1.77, P < .001), receiving HH post-COVID pandemic (aOR: 2.73, P < .001), and accessing HH following a hospitalization (aOR: 1.30, P < .001) and lower among those who were Black compared with white (aOR: 0.52, P < .001). Portal use, particularly viewing test results and clinical notes and managing existing appointments, was highest during the first 10 days of an HH episode, especially among patients referred following a hospitalization. CONCLUSIONS AND IMPLICATIONS: HH patients use the patient portal to perform care management tasks and access clinical information. Study findings support opportunities to harness the patient portal to bridge information gaps and care coordination during HH care.

Profile of Older Dual-Enrollees Living in Areas with Managed Long-Term Services and Supports.

OBJECTIVES: Nearly half of all state Medicaid agencies in the United States have implemented managed long-term services and supports (MLTSS). Data gaps have inhibited our understanding of MLTSS experiences to date. We draw on a national survey with novel data linkages to develop a profile of older dual-enrollees with significant LTSS needs by MLTSS program presence. DESIGN: Cross-sectional observational study using the 2015 round of the National Health and Aging Trends Study (NHATS), a longitudinal study of a nationally representative sample of Medicare beneficiaries aged 65 years and older. SETTING AND PARTICIPANTS: The sample comprised 275 participants who self-reported Medicaid enrollment and met our definition of significant LTSS need as defined by receiving help with 2 or more self-care or mobility activities (eating, bathing, toileting, dressing, bed transfer, indoor mobility). METHODS: Bivariate analyses were used to comparatively examine differences in demographic, health, and care circumstances by MLTSS, as defined by living in a county with MLTSS program presence. RESULTS: Among approximately 1 million (weighted sample) older dual-enrollees with significant LTSS needs, 56.2% (weighted percentage) lived in counties with MLTSS and 43.7% lived in counties with mandatory MLTSS enrollment in 2015. Those living in areas with MLTSS were much more likely to be of Hispanic or other race and ethnicity (50.5% vs 15.1%, P < .001) yet less likely to live in a rural location (8.7% vs 31.4%, P < .05) or in a residential care facility or nursing home (18.4% vs 34.7%, P < .05). The majority (78.5%) received assistance from 2 or more helpers and received more than 70 hours of care per week. CONCLUSIONS AND IMPLICATIONS: Our findings reinforce the growing reach of MLTSS programs and importance of filling evidence gaps about who these programs are serving.

"Caregiving is teamwork " Information sharing in home care for older adults with disabilities living in the community.

AIM: We examined information sharing between direct care workers, family caregivers, and clinicians involved in the care of older adults with disabilities. METHODS: Semi-structured interviews with N = 11 representatives of home care agencies ("residential service agencies" in Maryland). RESULTS: Work system and process characteristics relevant to information sharing included: (1) using electronic management systems and patient portals to communicate within agencies and with clinicians, (2) implementing tools to gather information about client goals, preferences, and routines, and (3) relying on family members for information about clients' needs. Participants did not report differences in dementia-related care coordination; however, dementia-related adaptations involved additional considerations for navigating relationships with family and standardizing processes to communicate with clinicians. CONCLUSION: Findings highlight care demands experienced by direct care workers and support calls to better coordinate information sharing between interdisciplinary care teams.

Career development in pragmatic clinical trials to improve care for people living with dementia.

The growing number of people living with dementia (PLWD) requires a coordinated clinical response to deliver pragmatic, evidence-based interventions in frontline care settings. However, infrastructure to support such a response is lacking. Moreover, there are too few researchers conducting rigorous embedded pragmatic clinical trials (ePCTs) to make the vision of high quality, widely accessible dementia care a reality. National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's disease and Related Dementias Clinical Trials (IMPACT) Collaboratory seeks to improve the pipeline of early career researchers qualified to lead ePCTs by funding career development awards. Even with support from the Collaboratory, awardees face practical and methodological challenges to success, recently exacerbated by the COVID-19 pandemic. We first describe the training opportunities and support network for the IMPACT CDA recipients. This report then describes the unique career development challenges faced by early-career researchers involved in ePCTs for dementia care. Topics addressed include challenges in establishing a laboratory, academic promotion, mentoring and professional development, and work-life balance. Concrete suggestions to address these challenges are offered for early-career investigators, their mentors, and their supporting institutions. While some of these challenges are faced by researchers in other fields, this report seeks to provide a roadmap for expanding the work of the IMPACT Collaboratory and initiating future efforts to recruit, train, and retain talented early-career researchers involved in ePCTs for dementia care.

The Role of Place in Person- and Family-Oriented Long-Term Services and Supports.

Policy Points Little attention to date has been directed at examining how the long-term services and supports (LTSS) environmental context affects the health and well-being of older adults with disabilities. We develop a conceptual framework identifying environmental domains that contribute to LTSS use, care quality, and care experiences. We find the LTSS environment is highly associated with person-reported care experiences, but the direction of the relationship varies by domain; increased neighborhood social and economic deprivation are highly associated with experiencing adverse consequences due to unmet need, whereas availability and generosity of the health care and social services delivery environment are inversely associated with participation restrictions in valued activities. Policies targeting local and state-level LTSS-relevant environmental characteristics stand to improve the health and well-being of older adults with disabilities, particularly as it relates to adverse consequences due to unmet need and participation restrictions. CONTEXT: Long-term services and supports (LTSS) in the United States are characterized by their patchwork and unequal nature. The lack of generalizable person-reported information on LTSS care experiences connected to place of community residence has obscured our understanding of inequities and factors that may attenuate them. METHODS: We advance a conceptual framework of LTSS-relevant environmental domains, drawing on newly available data linkages from the 2015 National Health and Aging Trends Study to connect person-reported care experiences with public use spatial data. We assess relationships between LTSS-relevant environmental characteristic domains and person-reported care adverse consequences due to unmet need, participation restrictions, and subjective well-being for 2,411 older adults with disabilities and for key population subgroups by race, dementia, and Medicaid enrollment status. FINDINGS: We find the LTSS environment is highly associated with person-reported care experiences, but the direction of the relationship varies by domain. Measures of neighborhood social and economic deprivation (e.g., poverty, public assistance, social cohesion) are highly associated with experiencing adverse consequences due to unmet care needs. Measures of the health care and social services delivery environment (e.g., Medicaid Home and Community-Based Service Generosity, managed LTSS [MLTSS] presence, average direct care worker wage, availability of paid family leave) are inversely associated with experiencing participation restrictions in valued activities. Select measures of the built and natural environment (e.g., housing affordability) are associated with participation restrictions and lower subjective well-being. Observed relationships between measures of LTSS-relevant environmental characteristics and care experiences were generally held in directionality but were attenuated for key subpopulations. CONCLUSIONS: We present a framework and analyses describing the variable relationships between LTSS-relevant environmental factors and person-reported care experiences. LTSS-relevant environmental characteristics are differentially relevant to the care experiences of older adults with disabilities. Greater attention should be devoted to strengthening state- and community-based policies and practices that support aging in place.

Predictors of falls in older adults with and without dementia.

INTRODUCTION: Persons living with, versus without, dementia (PLWD) have heightened fall-risk. Little is known about whether fall-risk factors differ by dementia status. METHODS: Using the 2015 and 2016 National Health and Aging Trends Study, we prospectively identified fall-risk factors over a 12-month period among community-living older adults ≥65 years with and without dementia (n = 5581). RESULTS: Fall rates were higher among PLWD compared to persons without dementia (45.5% vs. 30.9%). In a multivariable model including sociodemographic, health, function, and environmental characteristics as predictors, vision impairment (OR: 2.22, 95% CI: 1.12-4.40), and living with a spouse versus alone (OR: 2.43, 95% CI: 1.09-5.43) predicted falls among PLWD, but not among persons without dementia. History of previous falls predicted subsequent falls regardless of dementia status (OR: 6.20, 95% CI: 3.81-10.09, and OR: 2.92, 95% CI: 2.50-3.40, respectively). DISCUSSION: Incorporating appropriate fall-risk factors could inform effective falls screening and prevention strategies for PLWD. HIGHLIGHTS: 46% of persons with dementia had ≥1 falls versus 31% of those without dementia in 2016. Vision impairment and living with a spouse predicted falls in persons with dementia. Study results support tailored fall prevention strategies for persons with dementia.

Catalyzing dementia care through the learning health system and consumer health information technology.

To advance care for persons with Alzheimer's disease and related dementias (ADRD), real-world health system effectiveness research must actively engage those affected to understand what works, for whom, in what setting, and for how long-an agenda central to learning health system (LHS) principles. This perspective discusses how emerging payment models, quality improvement initiatives, and population health strategies present opportunities to embed best practice principles of ADRD care within the LHS. We discuss how stakeholder engagement in an ADRD LHS when embedding, adapting, and refining prototypes can ensure that products are viable when implemented. Finally, we highlight the promise of consumer-oriented health information technologies in supporting persons living with ADRD and their care partners and delivering embedded ADRD interventions at scale. We aim to stimulate progress toward sustainable infrastructure paired with person- and family-facing innovations that catalyze broader transformation of ADRD care.

Characterizing caregiving supportive services use by caregiving relationship status.

BACKGROUND: Informal caregivers of older adults experience a high degree of psychosocial burden and strain. These emotional experiences often stem from stressful tasks associated with caregiving. Caregiving supportive services that provide assistance for stressful tasks are instrumental in alleviating caregiving burden and strain. Research is limited on what types of supportive services caregivers are utilizing by relationship status and their source of information regarding these services. We sought to characterize caregiving supportive services use by caregiver relationship status. METHODS: We analyzed cross-sectional data from the 2015 National Study of Caregiving limited to caregivers of older adults ≥65 years of age. Caregiver relationship status (i.e., spouse, child, other relative/non-relative) was the independent variable. Type of supportive service and source of information about supportive services were the dependent variables. Bivariate analyses were performed to examine the association with caregiver relationship status and associations between use of caregiving supportive services and caregiver and care recipient characteristics. Among service users, we measured associations between caregiver relationship status, type of supportive services used, and source of information about supportive services. RESULTS: Our sample consisted of 1871 informal caregivers, 30.7% reported using supportive services. By caregiver relationship status, children had the greatest use of supportive services compared to spouses and other relatives/non-relatives (46.5% vs. 27.6% vs. 25.9%, p = <0.01, respectively). Among users of services, there were no differences in type of services used. Spouses primarily received their information about services from a medical provider or social worker (73.8%, p = <0.001). CONCLUSION: Our findings highlight the need to ensure that other caregiving groups, such as spouses and other relatives/non-relatives, have access to important supportive services such as financial support. Medical providers and/or social workers should be leveraged and equipped to provide this information and refer to services accordingly.

Use of provider-sponsored patient portals among older adults and their family caregivers.

BACKGROUND: Millions of older adults co-manage or delegate health responsibilities to one or more family caregivers. Patient portals facilitate health care management tasks, but little is known about portal use arrangements (i.e., individual or joint use) among older adults and their caregivers. METHODS: We sought to characterize individual and joint use of the patient portal and to identify how using arrangements varies by individual-, interpersonal-, and community-level factors. We used linked 2017 National Health and Aging Trends Study, National Study on Caregiving, and American Community Survey data for a nationally representative sample of older adults (n = 1417; weighted n = 7.4 million) and their caregivers (n = 2232; weighted n = 20.6 million). Patient portals used by older adults and caregiver(s) were assessed via self-reports. We described portal use arrangements and tested for between-group differences using weighted Wald tests. Caregiver's likelihood of accessing the portal was modeled using weighted, multivariable logistic regression. RESULTS: One in ten (10%) community-living older adults were sole portal users, 3% were joint users with one or more caregivers, 14% solely relied on one or more caregivers as portal users, and 74% reported no portal use. Older adults whose portal was only used by caregiver(s) were more likely to be Medicaid-enrolled (20% vs. 1%; p < 0.001), have dementia (43% vs. 5%; p < 0.001), and be homebound (65% vs. 27%; p < 0.001). Caregivers were more likely to use the portal if they were college-educated adjusted odds ratio (aOR): 1.68; p < 0.01) and reported caregiving-related emotional difficulty (aOR: 1.92; p < 0.001) and doing more than their "fair share" (aOR: 1.48; p = 0.03), and were less likely if Black (versus White) (aOR: 0.61; p = 0.01). CONCLUSIONS: Patient portals could be a valuable platform for identifying and supporting caregivers of high-need older adults, but existing disparities in portal access must be closed to ensure equitable support.

Paid Help and Caregiving Experiences of Black Caregivers of Community-Dwelling Older Adults.

OBJECTIVES: We examine associations between use of paid help and caregiving-related experiences (emotional, financial, and physical difficulty) of Black family and unpaid caregivers of older adults. METHODS: We examine a sample of N = 572 non-Hispanic Black caregivers of community-dwelling older adults receiving help with daily activities from the 2015 National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC). Guided by Pearlin's Stress Process Model, logistic regression models examine associations between assisting with finding paid help and caregiver experiences. RESULTS: Black caregivers who helped care recipients find paid help more often had a college degree or higher, were helping older adults who received assistance with three or more self-care/mobility activities or who were living in poverty and were not receiving help with caregiving from family and friends. In fully-adjusted models, assisting with finding paid help was associated with emotional (AOR 1.92, 95% CI 1.27, 2.92 p < .01) and physical (AOR 2.16, 95% CI 1.04, 4.51; p = .04) difficulty. CONCLUSIONS: Greater efforts are needed to support Black family and unpaid caregivers who are caring for older adults using paid help. CLINICAL IMPLICATIONS: Future interventions that target Black caregivers of older adults using paid help could be useful for improving caregiving experiences.

The Role of Dementia and Residential Service Agency Characteristics in the Care Experiences of Maryland Medicaid Home and Community-Based Service Participants and Family and Unpaid Caregivers.

In Maryland, residential service agencies deliver Medicaid Home and Community-Based Services (HCBS) to older adults with disabilities through direct care workers (e.g., personal care aides). Leveraging survey data from residential service agency administrators, linked to interRAI Home Care assessments for 1144 participants, we describe agency characteristics, and participant and family caregiver experiences by participant dementia status. Most (61.7%) participants experienced low social engagement, and roughly 10.0% experienced a hospitalization or emergency room visit within 90 days. Few (14.4%) participants were served by agencies requiring dementia-specific direct care worker training, and most were served by agencies offering supplemental services, or in which direct care workers helped with health information technology (81.2% and 72.8%, respectively). Few caregivers reported negative care experiences. Participants with dementia and those served by agencies with training and support more often reported negative care experiences. Findings lay the foundation for future longitudinal and embedded interventions within Medicaid HCBS.

Who's Helping Whom? Examination of Care Arrangements for Racially and Ethnically Diverse People Living With Dementia in the Community.

Objective: To address notions around care arrangements for Black and Hispanic people living with dementia (PLwD), the study examined if racial and ethnic differences exist for community-dwelling PLwD. Methods: Using cross-sectional data from the 2015 National Health and Aging Trends Study, we used Pearson's chi-square and mean comparison to examine differences among a sample of n = 863 community-dwelling White, Black, and Hispanic older PLwD. Results: Black PLwD were less likely than White PLwD to use paid help (26.8% vs. 32.6%), but Hispanic PLwD were most likely to use paid help (46.2%, p < 0.05). Black and Hispanic older adults were more often receiving help from a child (65.8% and 72.2%, respectively; p = 0.01) or other family member (40.3% and 31.0%, respectively; p < 0.01). Discussion: Our findings highlight the important role of familial support in care provision for Black and Hispanic communities. Caregiving supports should be intentional in centering services on the family, not a sole caregiver.

Associations Between Use of Paid Help and Care Experiences Among Medicare-Medicaid Enrolled Older Adults With and Without Dementia.

OBJECTIVES: Community-living older Medicare and Medicaid enrollees ("dual-enrollees") have high care needs and commonly receive paid and unpaid long-term services and supports (LTSS) to help with routine activities. Little is known about whether receiving paid help or individuals' state and neighborhood environmental context ("LTSS environment") relates to dual-enrollees' care experiences. METHODS: We examine a sample of n = 979 community-dwelling dual-enrollees with disabilities from 2011 to 2015 National Health and Aging Trends Study, linked to measures of neighborhood disadvantage and state Medicaid home and community-based services (HCBS) generosity. Logistic regression models stratified by dementia status assess associations between paid help and: (a) adverse consequences due to unmet care needs, and (b) participation restrictions in valued activities, among dual-enrollees with and without dementia, adjusting for individual and LTSS environmental characteristics. RESULTS: Use of paid help was greater for those with (versus without) dementia (46.9% vs. 37.8%). Neighborhood disadvantage was associated with greater use of paid help among dual-enrollees living with dementia. High state Medicaid HCBS generosity was associated with the use of paid help, regardless of dementia status. Dual-enrollees with dementia receiving paid help had higher odds of experiencing adverse consequences due to unmet need (adjusted odds ratio = 2.05; 95% confidence interval 1.16-3.61; p = .02)-no significant associations were observed for participation restrictions. Use of paid help and LTSS environment were not significantly associated with care experiences for dual-enrollees without dementia. DISCUSSION: Findings highlight the complexities of caring for dual-enrollees, particularly those with dementia, and emphasize the need to strengthen the delivery of paid care with considerations for the LTSS environment.

Transcending inequities in dementia care in Black communities: Lessons from the maximizing independence at home care coordination program.

PURPOSE: We examine care partners' experience of the Maximizing Independence at Home (MIND) intervention, a multicomponent, home-based dementia care coordination program designed to provide high quality, wholistic care coordination for people and families living with dementia. The goal of the study was to understand 1. the unique dementia-related needs of Black care partners and barriers and challenges to caregiving experienced within the Black community, 2. perceived benefits of the MIND program, and 3. ways to improve the program and make it more culturally responsive to the Black community. METHOD: We conducted three focus groups totaling 20 care partners of people living with dementia; who participated in the MIND intervention (2014-2019); all Black/African American and English speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using inductive approaches. FINDINGS: Participants noted three overarching themes related to dementia care needs and challenges in the Black community: difficulty finding and accessing dementia information and relevant services and supports; familial conflict/lack of sibling and familial support; and lack of effective communication about dementia within Black Communities. Regarding MIND at home program benefits, four themes emerged: 1. perceived to help locate resources (formal and informal); 2. provided care partners an opportunity for socialization and interaction; 3. included comprehensive assessments and helpful linked information; and 4. resulted in a "much needed break for care partners." Increased diversity of the MIND program personnel, greater clarity and consistency in MIND program promotion, and better communications were themes for how the program could be improved. CONCLUSION: Care partners participating in the MIND program perceived common benefits in aspects related to care for the persons living with dementia as well as benefits to themselves, believed the program addressed important challenges and gaps in education, services, and social support, and could be enhanced in its delivery and cultural responsiveness.

The Influence of Race and Gender on Receiving Assistance With Daily Activities Among Older Americans.

BACKGROUND AND OBJECTIVES: Nearly 8.2 million community-dwelling, older Medicare beneficiaries receive support from long-term services and supports (LTSS) with routine daily activities. Prior work demonstrates disability-related disparities; however, it is unclear whether these patterns persist among LTSS recipients and across specific sets of activities. We examine race and gender differences in receiving help with self-care (e.g., eating), mobility (e.g., getting around the house), and household (e.g., shopping) activities in a nationally representative sample of community-dwelling Medicare beneficiaries receiving LTSS. RESEARCH DESIGN AND METHODS: Cross-sectional analysis of 1,808 White and Black older adults receiving assistance with routine daily activities in the 2015 National Health and Aging Trends Study. Bivariate statistics were used to describe the sample and provide comparisons of characteristics by race and gender. Logistic regression models examined race and gender differences in receiving assistance with self-care, mobility, and household activities after adjusting for sociodemographic and health characteristics. RESULTS: Race and gender differences were observed across all sociodemographic and health characteristics, as well as for all forms of assistance. Relative to White men, Black men had lower odds of receiving help with self-care activities. White and black women had higher odds and Black men had lower odds of getting help with mobility activities than White men. Black men and White and Black women all had higher odds of receiving assistance with household tasks compared to White men. DISCUSSION AND IMPLICATIONS: Our findings indicate that, despite prior evidence of disability-related disparities, the receipt of help with self-care, mobility, and household activities varies by race and gender. Findings reveal several target areas for future research. Future work should examine the role of cultural and social preferences for care, as well as the appropriateness of help, as evidenced by health service use and changes in quality of life.

"I Am the Home Care Agency": The Dementia Family Caregiver Experience Managing Paid Care in the Home.

As the locus of long-term care in the United States shifts from institutions to the community, paid caregivers (i.e., home health aides, personal care attendants) are providing more hands-on care to persons with dementia living at home. Yet, little is known about how family caregivers engage with paid caregivers. We conducted in-depth, semi-structured interviews (n = 15) with family caregivers, of persons living at home with severe dementia, and enriched our findings with data from a second cohort of family caregivers of persons with dementia (n = 9). Whether paid caregivers were hired privately or employed via a Medicaid-funded agency, family caregivers reported that they needed to manage paid caregivers in the home. Core management tasks were day-to-day monitoring and relationship building with family caregivers; training paid caregivers and coordinating care with homecare agencies was also described. In order to support family caregivers of individuals with dementia at home, it is important consider their preferences and skills in order to effectively manage paid caregivers. Support of efforts to build a high-quality paid caregiving workforce has the potential to improve not only care delivered to persons with dementia, but the experiences of their family caregivers.

Is Dementia-Specific Caregiving Compared With Non-Dementia Caregiving Associated With Physical Difficulty Among Caregivers for Community-Dwelling Adults?

OBJECTIVE: The purpose of this study is to identify whether dementia caregiving is associated with physical difficulty among informal caregivers. METHODS: This cross-sectional retrospective cohort study design used data from the 2015 National Health and Aging Trends Study and the National Study of Caregiving. Binary logistic regression was used to examine the association between substantial physical difficulty and dementia caregiving among 1,871 caregivers. RESULTS: Nearly 14% of the caregivers reported substantial physical difficulty. Dementia caregivers were 1.5 times more likely to report caregiving-related substantial physical difficulty (adjusted odds ratio [AOR] = 1.58, p = .04) than non-dementia caregivers. Factors associated with substantial physical difficulty included caregiver gender, self-rated health, depressive symptoms, pain, and caring for someone receiving assistance with three or more self-care or mobility activities. DISCUSSION: Future studies should identify strategies to mitigate the physical demands on dementia caregivers. Early monitoring of caregivers' self-rated health, depressive symptoms, and pain may identify those more likely to experience physical difficulty.

State Medicaid Financing and Access to Large Assisted Living Settings for Medicare-Medicaid Dual-Eligibles.

Assisted living has become more widely used by dual-eligible Medicare beneficiaries as states try to rebalance their long-term services and supports away from institutional (nursing home) care. In an analysis of 2014 Medicare data for 506,193 adults who live in large (25+ beds) assisted living communities, we found wide variability among states in the share of assisted living residents who were dual-eligible, ranging from 6% in New Hampshire to over 40% in New York. This variation is strongly correlated with the Medicaid support for assisted living care: In states with a Medicaid state plan option covering services in assisted living or both a state plan and waiver, the percent of assisted living residents with dual-eligibility was more than 10 percentage points higher than in states with neither a state plan nor waiver. Findings provide a basis for understanding the role of Medicaid financing in access to assisted living for duals.