The associations between unmet needs with protective factors, risk factors and outcomes among care partners of community-dwelling persons living with dementia.

OBJECTIVES: Describe the prevalence and types of unmet needs among community-dwelling dementia care partners (CPs) and determine associations between unmet needs with protective factors, risk factors and outcomes. METHOD: A cross-sectional analysis of 638 racially and cognitively diverse community-dwelling persons living with dementia (PLWD) and their CPs participating in a comprehensive in-home assessment of dementia-related needs. Unmet CP needs (19 items, 6 domains) were rated by a clinician using the Johns Hopkins Dementia Care Needs Assessment (JHDCNA). Multivariate linear regression models were used to examine associations between total percent unmet CP needs with demographic, protective and risk factors. RESULTS: Nearly all CPs had at least one unmet need (99.53%), with a mean of 5.7 (±2.6). The most common domains with ≥1 unmet need were memory disorder education, care skills and knowledge of resources (98%), legal issues/concerns (73.8%), CP mental health (44.6%) and access to informal support (42.7%). Adjusted multivariate models suggest the strongest consistent predictive factors relate to informal emotional support, CP physical health, use or difficulty getting formal services/supports (both for CPs and PLWD), and CP time spent with PLWD. Greater levels of unmet needs were associated with worse PLWD outcomes and CP outcomes, after adjusting for demographics. CONCLUSIONS: CPs have high rates of diverse, but modifiable unmet needs. Data suggest optimal approaches to dementia care should take a family-centered home-based approach that includes routine CP needs assessment, offer targeted interventions that include both traditional medical supports as well as strategies to increase and leverage informal social networks, and ones that can bridge and coordinate medical with non-medical supports. These findings can be used to inform new approaches to support CPs, improve PLWD and CP outcomes, and target groups most at risk for inequities.

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.

Reasons for Hospitalization while Receiving Dementia Care Coordination through Maximizing Independence at Home.

OBJECTIVES: Persons living with dementia (PLWD), particularly those with higher levels of functional impairment, are at increased risk of hospitalization and higher hospital-associated health care costs. Our objective was to provide a nuanced description of reasons for hospitalizations over a 12-month period among community-living persons with dementia taking part in a dementia care coordination study using caregiver-reported data and to describe how reasons varied by disease stage. DESIGN: Retrospective descriptive analysis of pooled data from 2 concurrent studies of PLWD receiving the MIND at Home dementia care coordination program. SETTING AND PARTICIPANTS: Four hundred ninety-four community-dwelling PLWD with a family caregiver in the Greater Baltimore and Central Maryland region, 2015‒2019. METHODS: PLWD sociodemographic, clinical, functional, cognitive, and behavioral characteristics were assessed during an in-home baseline visit. Caregiver-reported hospitalizations and primary reasons for events were recorded every 4.5 months by research staff and by memory care coordinators during program delivery for a 12-month period. Hospitalization event data were subsequently reviewed, reconciled, and coded by a trained investigator. RESULTS: One hundred seventy PLWD (34.4%) had at least 1 hospitalization within 12 months of enrollment, with 316 separate events. The most common primary reason for hospitalization according to caregivers was infection (22.4%), falls (16.5%), and cardiovascular/pulmonary (12.4%). Top reasons for hospitalization were falls among persons with mild and moderate functional impairment (17.7% and 21.9% respectively) and infection among PLWD with severe impairment (30.3%). CONCLUSIONS AND IMPLICATIONS: Infections and falls were the most common caregiver-reported reasons for hospitalization in PLWD receiving dementia care coordination. Reasons for hospitalization varied based on severity of functional impairment. Greater understanding of reasons for hospitalization among PLWD receiving dementia care management interventions, from multiple important perspectives, may help programs more effectively address and prevent hospitalization.

Recruitment of a diverse research cohort in a large metropolitan area for dementia intervention studies.

The human and financial costs of dementia care are growing exponentially. Over five and a half million older Americans are estimated to be living with Alzheimer's disease and related dementia (ADRD). By 2050, this is expected to increase to over 13 million, and persons of color are at the highest risk. Considerable funds have been committed to research to prevent, treat, and care for persons at risk for ADRD. However, enrollment of research participants, particularly those coming from diverse backgrounds, is a perennial challenge and has serious implications. This paper quantitatively details the results of a community-based multi-modal outreach effort to recruit a racially diverse sample for non-pharmacological dementia intervention, including referral and participant sources and yield, total recruitment costs and cost per enrolled dyad, and a qualitative description of lessons learned, with particular attention to the recruitment of Black participants. The largest number of referrals and referrals converting to study participants, for both Black and White persons, were from a Maryland Department of Health mailing to Medicaid recipients. There was an important difference in the most effective strategies, proportionally, for white and Black participants. The MDH mailing had the highest yield for our Black referrals and participants, while professional referrals had the highest yield for white referrals and participants. The total estimated cost of recruitment was $101,058, or $156.19 per enrolled dyad. Ultimately 646 persons with dementia and care partner dyads were enrolled, 323 (50%) of whom were Black.

Cost-Effective Care Coordination for People With Dementia at Home.

BACKGROUND AND OBJECTIVES: People with dementia (PWD) represent some of the highest-need and highest-cost individuals living in the community. Maximizing Independence (MIND) at Home is a potentially cost-effective and scalable home-based dementia care coordination program that uses trained, nonclinical community workers as the primary contact between the PWD and their care partner, supported by a multidisciplinary clinical team with expertise in dementia care. RESEARCH DESIGN AND METHODS: Cost of care management services based on actual time spent by care management personnel over first 12 months of MIND at Home intervention was calculated for 342 MIND at Home recipients from Baltimore, Maryland and surrounding areas participating in a Centers for Medicare and Medicaid Services (CMS) funded Health Care Innovation Award demonstration project. Difference-in-differences analysis of claims-based Medicaid spending of 120 dually-eligible MIND at Home participants with their propensity score matched comparison group (n = 360). RESULTS: The average cost per enrollee per month was $110, or $1,320 per annum. Medicaid expenditures of dually-eligible participants grew 1.12 percentage points per quarter more slowly than that of the matched comparison group. Most savings came from slower growth in inpatient and long-term nursing home use. Net of the cost of the 5-year MIND at Home intervention, 5-year Medicaid savings are estimated at $7,052 per beneficiary, a 1.12-fold return on investment. DISCUSSION AND IMPLICATIONS: Managed care plans with the flexibility to engage community health workers could benefit from a low-cost, high-touch intervention to meet the needs of enrollees with dementia. Limitations for using and reimbursing community health workers exist in Medicare fee-for-service, which CMS should address to maximize benefit for PWD.

Unmet needs in community-living persons with dementia are common, often non-medical and related to patient and caregiver characteristics.

OBJECTIVE: Understanding which characteristics of persons with dementia (PWD) and their caregivers are associated with unmet needs can inform strategies to address those needs. Our purpose was to determine the percentage of PWD having unmet needs and significant correlates of unmet needs in PWD. DESIGN: Cross-sectional data were analyzed using bivariate and hierarchical multiple linear regression analyses. SETTING: Participants lived in the greater Baltimore, Maryland and Washington DC suburban area. PARTICIPANTS: A sample of 646 community-living PWD and their informal caregivers participated in an in-home assessment of dementia-related needs. MEASUREMENTS: Unmet needs were identified using the Johns Hopkins Dementia Care Needs Assessment. Correlates of unmet needs were determined using demographic, socioeconomic, clinical, functional and quality of life characteristics of the PWD and their caregivers. RESULTS: PWD had a mean of 10.6 (±4.8) unmet needs out of 43 items (24.8%). Unmet needs were most common in Home/Personal Safety (97.4%), General Health Care (83.1%), and Daily Activities (73.2%) domains. Higher unmet needs were significantly related to non-white race, lower education, higher cognitive function, more neuropsychiatric symptoms, lower quality of life in PWD, and having caregivers with lower education or who spent fewer hours/week with the PWD. CONCLUSIONS: Unmet needs are common in community-living PWD, and most are non-medical. Home-based dementia care can identify and address PWD's unmet needs by focusing on care recipients and caregivers to enable PWD to remain safely at home.

MIND at Home-Streamlined: Study protocol for a randomized trial of home-based care coordination for persons with dementia and their caregivers.

BACKGROUND: Dementia is associated with high health care costs, premature long-term care (LTC) placement, medical complications, reduced quality of life, and caregiver burden. Most health care providers and systems are not yet organized or equipped to provide comprehensive long-term care management for dementia, although a range of effective symptoms and supportive care approaches exist. The Maximizing Independence at Home-Streamlined (MIND-S) is a promising model of home-based dementia care coordination designed to efficiently improve person-centered outcomes, while reducing care costs. This report describes the rationale and design of an NIA-funded randomized controlled trial to test the impact of MIND-S on time to LTC placement, person with dementia outcomes (unmet needs, behavior, quality of life), family caregiver outcomes (unmet needs, burden), and cost offset at 18 (primary end point) and 24 months, compared to an augmented usual care group. METHODS: This is a 24-month, parallel group, randomized trial evaluating MIND-S in a cohort of 304 community-living persons with dementia and their family caregivers in Maryland. MIND-S dyads receive 18 months of care coordination by an interdisciplinary team comprised of trained non-clinical community workers (e.g. Memory Care Coordinators), a registered nurse, and a geriatric psychiatrist. Intervention components include in-home dementia-related needs assessments; individualized care planning; implementation of standardized evidence-based care strategy protocols; and ongoing monitoring and reassessment. Outcomes are assessed by blinded evaluators at baseline, 4.5, 9, 13.5, 18, and 24 months. DISCUSSION: Trial results will provide rigorous data to inform innovations in effective system-level approaches to dementia care.

Home is where the future is: The BrightFocus Foundation consensus panel on dementia care.

INTRODUCTION: A national consensus panel was convened to develop recommendations on future directions for home-based dementia care (HBDC). METHODS: The panel summarized advantages and challenges of shifting to HBDC as the nexus of care and developed consensus-based recommendations. RESULTS: The panel developed five core recommendations: (1) HBDC should be considered the nexus of new dementia models, from diagnosis to end of life in dementia; (2) new payment models are needed to support HBDC and reward integration of care; (3) a diverse new workforce that spans the care continuum should be prepared urgently; (4) new technologies to promote communication, monitoring/safety, and symptoms management must be tested, integrated, and deployed; and (5) targeted dissemination efforts for HBDC must be employed. DISCUSSION: HBDC represents a promising paradigm shift to improve care for those living with dementia and their family caregivers: these recommendations provide a framework to chart a course forward for HBDC.

Comprehensive home-based care coordination for vulnerable elders with dementia: Maximizing Independence at Home-Plus-Study protocol.

INTRODUCTION: Despite availability of effective care strategies for dementia, most health care systems are not yet organized or equipped to provide comprehensive family-centered dementia care management. Maximizing Independence at Home-Plus is a promising new model of dementia care coordination being tested in the U.S. through a Health Care Innovation Award funded by the Centers for Medicare and Medicaid Services that may serve as a model to address these delivery gaps, improve outcomes, and lower costs. This report provides an overview of the Health Care Innovation Award aims, study design, and methodology. METHODS: This is a prospective, quasi-experimental intervention study of 342 community-living Medicare-Medicaid dual eligibles and Medicare-only beneficiaries with dementia in Maryland. Primary analyses will assess the impact of Maximizing Independence at Home-Plus on risk of nursing home long-term care placement, hospitalization, and health care expenditures (Medicare, Medicaid) at 12, 18 (primary end point), and 24 months, compared to a propensity-matched comparison group. DISCUSSION: The goals of the Maximizing Independence at Home-Plus model are to improve care coordination, ability to remain at home, and life quality for participants and caregivers, while reducing total costs of care for this vulnerable population. This Health Care Innovation Award project will provide timely information on the impact of Maximizing Independence at Home-Plus care coordination model on a variety of outcomes including effects on Medicaid and Medicare expenditures and service utilization. Participant characteristic data, cost savings, and program delivery costs will be analyzed to develop a risk-adjusted payment model to encourage sustainability and facilitate spread.

Behavioural health interventions in the Johns Hopkins Community Health Partnership: integrated care as a component of health systems transformation.

Health systems in the USA have received a mandate to improve quality while reining in costs. Several opportunities have been created to stimulate this transformation. This paper describes the design, early implementation and lessons learned for the behavioural components of the John Hopkins Community Health Partnership (J-CHiP) programme. J-CHiP is designed to improve health outcomes and reduce the total healthcare costs of a group of high healthcare use patients who are insured by the government-funded health insurance programmes, Medicaid and Medicare. These patients have a disproportionately high prevalence of depression, other psychiatric conditions, and unhealthy behaviours that could be addressed with behavioural interventions. The J-CHiP behavioural intervention is based on integrated care models, which include embedding mental health professionals into primary sites. A four-session behaviour-based protocol was developed to motivate self-efficacy through illness management skills. In addition to staff embedded in primary care, the programme design includes expedited access to specialist psychiatric services as well as a community outreach component that addresses stigma. The progress and challenges involved with developing this programme over a relatively short period of time are discussed.