OBJECTIVES:People with dementia have several unmet needs during the syndrome progression. More unmet needs are related to hospitalizations, injuries, and death. Little is known about the care needs for people living with dementia in Brazil. This study aims to translate and adapt the Johns Hopkins Dementia Care Needs Assessment (JHDCNA 2.0), a tool design to identify the dementia-related needs of people with dementia and their caregivers, to Brazilian Portuguese, and to verify psychometric properties. METHOD:JHDCNA 2.0 underwent a translation, back-translation, and cultural adaptation. Preliminary psychometric testing of the Brazilian version (JHDCNA-Br 2.0) included pilot testing and experts' assessment, analyses of reliability, evidence based on test content and relations to other variables. We conducted 140 in-home interviews to assess several sociodemographic and health aspects and to be able to complete the JHDCNA-Br 2.0. RESULTS:The JHDCNA-Br 2.0 is reliable and has evidence based on test content and on relations to other variables for people living with dementia and caregivers. Preliminary results suggest high prevalence of unmet needs. CONCLUSION:JHDCNA-Br 2.0 is a reliable and valid tool. The availability of this tool brings new opportunities to the study of dementia care, taking into consideration cultural aspects and may help inform future approaches to dementia care delivery to support persons and families affected by these conditions.

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.

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.

This issue of the American Journal of Geriatric Psychiatry includes a systematic review of the literature titled The Role of telemedicine in the management of the behavioral and psychological symptoms of dementia (BPSD): a systematic review. 1 Nkodo J-A, Gana W, Debacq C, et al. The Role of telemedicine in the management of the behavioral and psychological symptoms of dementia (BPSD): a systematic review. Am J Geriatr Psychiatry 2022; 30:1135--1150. https://doi.org/10.1016/j.jagp.2022.01.013. Google Scholar Nkodo et al. find that telemedicine is acceptable and feasible for both patients with BPSD and their caregivers, decreases the frequency and intensity of BPSD, and improves caregiver's perceived wellbeing and mental health. Given the time it takes to complete a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA)-compliant systematic review, Nkodo and colleagues do not include articles with data collected after the start of the coronavirus disease 2019 (COVID-19) global pandemic. The authors of this commentary have extensive experience utilizing telehealth services for the treatment of older adults, both before and after the dramatic shifts in telehealth-related policy, reimbursement, and volumes since the start of the COVID-19 pandemic. We take this opportunity to drive home a few key points related to furthering the advancement of telehealth use among older adults.

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. (C) 2022 AMDA - The Society for Post-Acute and Long-Term Care Medicine.

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.

Abstract Direct care workers (e.g., personal care aides) are paid health care professionals who provide hands on assistance with daily activities to persons with disabilities in home, community, and institutional settings. Many workers are employed by direct care agencies, but little is known or understood about the organizational attributes of these agencies. We describe results from a mixed mode (postal mail, electronic, and telephone) survey of n=1112 residential care agency administrators in Maryland to assess organizational (e.g., size, supplemental services) and direct care worker (e.g., training) characteristics. Preliminary findings indicate that half of direct care agencies’ revenue comes from Medicaid and roughly 40% of clients are living with dementia. Administrators report challenges managing dementia-related behaviors (70%), communicating with persons living with dementia (63%) and interacting with family caregivers (63%). Findings from this work will inform the development of an organizational level intervention that targets training and support of direct care workers.

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.

Abstract MIND at Home is a home-based care coordination program for persons living with dementia (PLWD) and their informal care partners (CP). Assessments, care planning and coordination is delivered by trained non-clinical Memory Care Coordinators (MCCs), working together on an interdisciplinary team with nurses and geriatric psychiatrists. We report qualitative results from program staff (two nurses and eight MCCs) who implemented the program in the context of two clinical trials. Care team respondents answered open-ended questions covering 5 domains pertaining to: helpful skillsets; positive and challenging factors aspects of care coordination; barriers to care coordination for clients; and improvements suggestions/resources to strengthen the program. Compassion, finding common ground, listening, organization, and time management were reported as critical skills. Staff enjoyed team collaboration, being in and learning about the community, increasing CP confidence and mastery when caring for a PLWD. Reported challenges included documentation in EHR, accessing/navigating resources, driving long distances, unsafe neighborhoods, ambiguous assessment tools, and working with low engagement clients. Common barriers faced by clients (as reported by staff) were financial struggles/poverty, and lack of insurance coverage for needed services. Staff suggested several improvements: better communication strategies, integration with LTSS services and medical providers, 24-hour program hotline, continuous education for staff, simplified data collection and care delivery tracking process. This presentation on the experience of MIND at Home trained nurses and MCCs provides deep insight on how this and similar care coordination programs might be successfully implemented or strengthened.

MIND at Home is a comprehensive, home-based care coordination intervention for people with Alzheimer's disease or related dementias (A/D) who live in the community and for their family caregivers. Developed by researchers at Johns Hopkins University (JHU), the model has been shown to extend the time a person with A/D remains at home for almost two years, as well as improved quality of life and quality of care and reduced caregiver burden. The MIND at Home pilot at Superior HealthPlan is a collaboration between Centene Corporation, JHU, and Superior HealthPlan (Superior). The goal of the MIND at Home pilot is to adapt, implement, and evaluate the impact of MIND at Home within Superior's Medicaid population. The pilot is structured as an interventional study of the MIND at Home program versus a propensity score-matched (PSM) comparison group receiving standard-of-care. The duration of the pilot is approximately 12 months, with longitudinal follow-up at 18 and 24 months. The pilot population includes Superior HealthPlan Medicaid members (receiving Long-Term Services & Supports) who are community-residing and have a confirmed diagnosis of A/D. The study has enrolled approximately 300 participants who have received the intervention. An analysis of claims data for participants receiving the MIND at Home intervention indicates the program increased primary care utilization (+10.0%) while reducing emergency department (ED) utilization (-15.8%), polypharmacy (-5.0%), and total spend (-1.35%). Consumer survey results indicate high levels of satisfaction among both pilot participants and their family caregivers and case studies anecdotally illustrate the significant impacts the MIND at Home program has had on participant and caregiver quality of life. Preliminary outcomes of the pilot indicate the MIND at Home program reduces high cost healthcare utilization - particularly ED and polypharmacy - and overall participant costs. Additional outcomes illustrate participants are highly satisfied with the MIND at Home program and have experienced dramatic increases in quality of life. This pilot showcases the value of operationalizing this evidence-based academic care model for A/D in a Medicaid population and that collaboration across academic research, industry, and government-sponsored healthcare programs can result in improved outcomes for individuals with A/D.

Scalable, home‐based approaches for the delivery of comprehensive dementia care that bridge medical, social, and supportive care services are needed to improve outcomes and care value for persons living with dementia (PWD) and family carers. We present results from a CMS‐funded Healthcare Innovations Award evaluating the 18‐month impact of a comprehensive home‐based dementia care coordination program, MIND at Home, on clinical and quality of life outcomes in a racially and socioeconomically diverse group of community‐living PWD and family carers.

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.

Abstract In the coming decades, greater numbers of people will either have Alzheimer’s Disease or a related dementia or will take care of a family member with dementia. The dementia syndromes are associated with increased risk of medical, social, and behavioral complications in both the person with dementia (PWD) and the caregiver (CG), many of which are preventable. These complications, and the dementia itself, can impede access to care and ultimately hasten residential care placement, which can be both undesirable and costly. A nearly universal unmet need in PWD/CG dyads is dementia-specific education. Therefore, it is vital we find ways to support and provide education to CG/PWD dyads to manage dementia in the community and home setting. MIND at Home is a dementia-care model developed and tested at Johns Hopkins University School of Medicine to minimize dementia complications and delay institutionalization by training non-clinical Memory Care Coordinators (MCCs) working under clinical supervision to support and guide PWD/CG dyads in the community. MCCs collaborate with CGs and PWDs in the community using an individualized care plan structured around the dyads’ specific dementia-related needs. This presentation will describe how the MIND at Home team used handheld tablets to connect MCCs to clinicians from participants’ homes, and will report on challenges encountered, strategies to address them, and participant and caregiver satisfaction with the telehealth experience.

Behavioral and Psychological Symptoms of Dementia (BPSD) are common and challenging, with no consistently effective pharmacological or non-pharmacological treatments available. Among psychotropics, atypical antipsychotics have the strongest evidence, but adverse effects and safety concerns often outweigh benefit. SSRIs are often better tolerated, and the strongest evidence is for citalopram, but QTc prolongation is a limiting factor. Evidence for mood stabilizers is weak. Some evidence supports the use of dronabinol, prazosin, and dextromethorphan/quinidine. Pimvanserin is FDA approved for psychosis in Parkinson's disease. Options for psychosis in Dementia with Lewy bodies include cholinesterase inhibitor, quetiapine, and clozapine. Some promising results have been reported with ECT for agitation and aggression in dementia. An algorithm approach for BPSD in Alzheimer's disease (AD) and mixed dementia has been used on several inpatient units in Canada. Insights into possible biological mechanisms of BPSD throughout the spectrum of AD severity may be useful for treatment development. Areas with the best evidence include depression, anxiety and apathy in preclinical and prodromal AD. BPSD are associated with a mix of “core” mechanisms and “non-core” mechanisms of AD and may be associated with the earliest stages of AD pathology, but data remains relatively sparse. Other factors contributing to BPSD include physical and social conditions, as well as the dynamic between caregivers and persons with dementia. The MIND at Home multidisciplinary intervention is designed to support persons with dementia and their caregivers at home. Features include: completing an in home patient and caregiver-centered dementia-related needs assessment, building an evidence based care plan around patient and caregiver-specific needs, a Memory Care Coordinator (MCC) providing dementia education, support and guidance to help the dyad prioritize and follow through on care plan recommendations, and a multidisciplinary clinical team supporting the MCC, with regular team meetings, with telephone and video visit access to other team members from patients’ homes. Prior studies demonstrate that dementia care co-management models contribute to better health-related quality of life, fewer behavioral symptoms of dementia, less severe functional and cognitive symptoms, reduce stress and depression in caregivers and lead to reduced utilization of acute care services. Imperative and opportunity exist for implementing an evidence-based model of integrated dementia care across a health care system that places an emphasis on quality and reducing health care costs. Partners HealthCare, a large and diverse health care system, is in the process developing and launching such a model.

AbstractBackgroundMIND at Home, a value‐based innovation, is a comprehensive, home‐based care coordination program for people with dementia and their carers to identify and address a broad set of health determinants to improve health, clinical outcomes, and reduce costs. We present pooled trial data evaluate change in 12‐month health care utilization patterns among a racially and cognitively diverse group of persons living with dementia who received MIND at Home.MethodPre‐post, adjusted Poisson regression models were used to evaluate health care utilization patterns for a pooled sample of persons with dementia receiving MIND at Home (n=391) in the 12 month period after enrollment in the program with the 12 month period prior to enrollment. Hospitalizations, ED visits, outpatient visits, home and community‐based services (HCBS) were ascertained via proxy‐report from carers.ResultThe mean number of hospital admissions decreased by 27% in the one year period after baseline (95% CI: 6%, 44%, p=0.01) compared with the year prior. Adjusted rates of one or more hospitalizations declined from 36.8% to 32.5%, with a crude rate reduction of 11.6% (unadjusted) between pre‐and post‐periods. Mean number of HCBS services used increased by 70% (95% CI: 54%, 88%, p<0.01) and mean number of outpatient specialties seen in the post period increased by 52% (95% CI: 43%, 62%, p<0.01) compared with the year before baseline. Average number of outpatient provider visits remained the same (p=0.76). Mean number of ER visits decreased by 16% (95% CI: ‐8%, 34%) but was not statistically significant (p=0.18).ConclusionResults provide compelling new quasi‐experimental data that supports the impact of the MIND at Home program on changing health care utilization patterns and is in line with our prior findings. Persons who received MIND at Home were less likely to use high cost acute health services (inpatient) and more likely to use more cost‐efficient services like home and community based services and physician services in the year after enrollment compared to the year prior. These data imply a potential cost benefit of the MIND at Home dementia care coordination program.