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.

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.