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.

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.

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.

A Multipronged, Adaptive Approach for the Recruitment of Diverse Community-Residing Elders with Memory Impairment: The MIND at Home Experience.

OBJECTIVE: To provide a critical review of a multipronged recruitment approach used to identify, recruit, and enroll a diverse community-based sample of persons with memory disorders into an 18-month randomized, controlled dementia care coordination trial. METHODS: Descriptive analysis of a recruitment approach comprised five strategies: community liaison ("gatekeepers") method, letters sent from trusted community organizations, display and distribution of study materials in the community, research registries, and general community outreach and engagement activities. Participants were 55 community organizations and 63 staff of community organizations in Baltimore, Maryland. Participant referral sources, eligibility, enrollment status, demographics, and loss to follow-up were tracked in a relational access database. RESULTS: In total, 1,275 referrals were received and 303 socioeconomically, cognitively, and racially diverse community-dwelling persons with cognitive disorders were enrolled. Most referrals came from letters sent from community organizations directly to clients on the study's behalf (39%) and referrals from community liaison organizations (29%). African American/black enrollees were most likely to come from community liaison organizations. CONCLUSION: A multipronged, adaptive approach led to the successful recruitment of diverse community-residing elders with memory impairment for an intervention trial. Key factors for success included using a range of evidence-supported outreach strategies, forming key strategic community partnerships, seeking regular stakeholder input through all research phases, and obtaining "buy-in" from community stakeholders by aligning study objectives with perceived unmet community needs.

A randomized controlled trial of a community-based dementia care coordination intervention: effects of MIND at Home on caregiver outcomes.

OBJECTIVE: To assess whether MIND at Home, a community-based, multicomponent, care coordination intervention, reduces unmet caregiving needs and burden in informal caregivers of persons with memory disorders. METHODS: An 18-month randomized controlled trial of 289 community-living care recipient (CR)-caregiver (informal caregivers, i.e., unpaid individuals who regularly assisted the CR) dyads from 28 postal code areas of Baltimore, Maryland was conducted. All dyads and the CR's primary care physician received the written needs assessment results and intervention recommendations. Intervention dyads then received an 18-month care coordination intervention delivered by nonclinical community workers to address unmet care needs through individualized care planning, referral and linkage to dementia services, provision of caregiver dementia education and skill-building strategies, and care progress monitoring by an interdisciplinary team. Primary outcome was total percent of unmet caregiver needs at 18 months. Secondary outcomes included objective and subjective caregiver burden measures, quality of life (QOL), and depression. RESULTS: Total percent of unmet caregiver needs declined in both groups from baseline to 18 months, with no statistically significant between-group difference. No significant group differences occurred in most caregiver burden measures, depression, or QOL. There was a potentially clinically relevant reduction in self-reported number of hours caregivers spent with the CR for MIND participants compared with control subjects. CONCLUSION: No statistically significant impacts on caregiver outcomes were found after multiple comparison adjustments. However, MIND at Home appeared to have had a modest and clinically meaningful impact on informal caregiver time spent with CRs.

A multidimensional home-based care coordination intervention for elders with memory disorders: the maximizing independence at home (MIND) pilot randomized trial.

OBJECTIVES: To assess whether a dementia care coordination intervention delays time to transition from home and reduces unmet needs in elders with memory disorders. DESIGN: 18-month randomized controlled trial of 303 community-living elders. SETTING: 28 postal code areas of Baltimore, MD. PARTICIPANTS: Age 70+ years, with a cognitive disorder, community-living, English-speaking, and having a study partner available. INTERVENTION: 18-month care coordination intervention to systematically identify and address dementia-related care needs through individualized care planning; referral and linkage to services; provision of dementia education and skill-building strategies; and care monitoring by an interdisciplinary team. MEASUREMENTS: Primary outcomes were time to transfer from home and total percent of unmet care needs at 18 months. RESULTS: Intervention participants had a significant delay in time to all-cause transition from home and the adjusted hazard of leaving the home was decreased by 37% (Hazard ratio: 0.63, 95% Confidence Interval: 0.42-0.94) compared with control participants. Although there was no significant group difference in reduction of total percent of unmet needs from baseline to 18 months, the intervention group had significant reductions in the proportion of unmet needs in safety and legal/advance care domains relative to controls. Intervention participants had a significant improvement in self-reported quality of life (QOL) relative to control participants. No group differences were found in proxy-rated QOL, neuropsychiatric symptoms, or depression. CONCLUSIONS: A home-based dementia care coordination intervention delivered by non-clinical community workers trained and overseen by geriatric clinicians led to delays in transition from home, reduced unmet needs, and improved self-reported QOL.

The impact of complex chronic diseases on care utilization among assisted living residents.

PURPOSE: Many residents of assisted living (AL) have chronic diseases that are difficult to manage, including congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD) and diabetes mellitus (DM). We estimated the amount and intensity of care delivered by the staff for residents with these conditions. METHODS: We performed a secondary data analysis from the Maryland Assisted Living (MDAL) Study (399 residents, 29 facilities). In-person assessments included measures of cognition, function, depression, and general medical health. Diagnosis of CHF, COPD, and DM, as well as current medications was abstracted from AL medical charts. Measures of care utilization were operationalized at the resident level as: 1) minutes per day of direct care (caregiver activity scale [CAS]), 2) subjective staff ratings of care burden, and 3) assigned AL "level of care" (based on state regulatory criteria). RESULTS: In best fit regression models, CHF and DM were not significant predictors of the evaluated care utilization measures; however, COPD was independently associated with increased minutes per day of direct care - 34% of the variance in the caregiver activity scale was explained by degree of functional dependency, cognitive impairment, age, and presence of COPD. Functional dependency, depressive symptoms, and age explained almost a quarter (23%) of the variance of staff care burden rating. For the AL level of care intensity rating, degree of functional dependency, level of cognition, and age were significant correlates, together explaining about 28% of the variance. CONCLUSION: The presence of COPD was a significant predictor of time per day of direct care. However, CHF and DM were not correlates of care utilization measures. Functional and cognitive impairment was associated with measures of care utilization, reiterating the importance of these characteristics in the utilization and intensity of care consumed by AL residents. Further study of this population could reveal other forms and amounts of care utilization.

12-month incidence, prevalence, persistence, and treatment of mental disorders among individuals recently admitted to assisted living facilities in Maryland.

BACKGROUND: To estimate the 12-month incidence, prevalence, and persistence of mental disorders among recently admitted assisted living (AL) residents and to describe the recognition and treatment of these disorders. METHODS: Two hundred recently admitted AL residents in 21 randomly selected AL facilities in Maryland received comprehensive physician-based cognitive and neuropsychiatric evaluations at baseline and 12 months later. An expert consensus panel adjudicated psychiatric diagnoses (using DSM-IV-TR criteria) and completeness of workup and treatment. Incidence, prevalence, and persistence were derived from the panel's assessment. Family and direct care staff recognition of mental disorders was also assessed. RESULTS: At baseline, three-quarters suffered from a cognitive disorder (56% dementia, 19% Cognitive Disorders Not Otherwise Specified) and 15% from an active non-cognitive mental disorder. Twelve-month incidence rates for dementia and non-cognitive psychiatric disorders were 17% and 3% respectively, and persistence rates were 89% and 41% respectively. Staff recognition rates for persistent dementias increased over the 12-month period but 25% of cases were still unrecognized at 12 months. Treatment was complete at 12 months for 71% of persistent dementia cases and 43% of persistent non-cognitive psychiatric disorder cases. CONCLUSIONS: Individuals recently admitted to AL are at high risk for having or developing mental disorders and a high proportion of cases, both persistent and incident, go unrecognized or untreated. Routine dementia and psychiatric screening and reassessment should be considered a standard care practice. Further study is needed to determine the longitudinal impact of psychiatric care on resident outcomes and use of facility resources.

What makes a difference to patients?

To make a difference to patients who increasingly suffer multiple chronic conditions, in a healthcare system that is capable of providing excellent care but is often ineffective and at cross-purposes in its application, means being prepared to take a different approach not only to the delivery of patient care, but to the education of physicians and other healthcare professionals. The model we must now practice and teach is one that emphasizes collaboration and prevention, quality and efficiency. Changes in practice recommended by the 2001 US Institute of Medicine report are being implemented system-wide, following the enactment of the US Patient Protection and Affordable Care Act. This paper discusses the evolving needs of patients with chronic psychiatric illness, and the psychiatrist's role in a rapidly changing healthcare landscape as a care provider, an interdisciplinary role model, and educator. In an aging population in which multi-morbidity is the norm, episodic, crisis-driven care is prohibitively expensive and does not serve patients well. Yet we still teach that model of care. The medications we prescribe for psychiatric illness, particularly antipsychotics, can cause and/or aggravate some of the commonest chronic medical illnesses; psychiatric educators must address the management of these complications. The management of chronic psychiatric illness in multi-morbid patients demands that we practice and teach a 'whole patient' approach to care, preferably delivered as part of a patient-centred team. The Affordable Care Act has mandated and created opportunities for new models designed to facilitate this, and a paradigm shift is needed in medical education. Clinicians must become adept at identifying underlying and contributing factors and collaborating with the patient, other providers, and the patient's family and significant others. Psychiatric formulation and patient care rely on these principles; we must now teach their application to other specialties, disciplines and professions.

Childless Elders in Assisted Living: Findings from the Maryland Assisted Living Study.

We compared data drawn from a random sample of 399 current assisted living (AL) residents and a subsample of 222 newly admitted residents for two groups: childless AL residents and AL residents with children. The percentage of childless AL residents (26%) in our study was slightly higher than US population estimates of childless persons age 65 and over (20%). In the overall sample, the two groups differed significantly by age, race and women's years of education. The childless group was slightly younger, had a higher percentage of African American residents, and had more years of education than the group with children. In the subsample, we looked at demographic, functional, financial and social characteristics and found that compared to residents with children, fewer childless residents had a dementia diagnosis, received visits from a relative while more paid less money per month for AL and reported having private insurance. As childlessness among older adults continues to increase, it will become increasingly important to understand how child status affects the need for and experience of long-term care.

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.

Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures.

PURPOSE: To identify correlates of self-rated and caregiver-rated quality of life (QOL) in community-residing persons with dementia (PWD) for intervention development. METHODS: Cross-sectional data of 254 PWD and their caregivers participating in a clinical trial were derived from in-home assessments. Self-rated QOL was measured with the Quality of Life-Alzheimer Disease (QOL-AD) scale, and caregiver-rated QOL was measured using the QOL-AD and Alzheimer Disease-Related Quality of Life (ADRQL) scales. Multivariate modeling identified correlates of the PWD' QOL. RESULTS: Self-rated QOL was related significantly to participant race, unmet needs, depression, and total medications. Caregiver-rated QOL-AD scores were significantly associated with participant function, unmet needs, depression, and health problems and with caregiver burden and self-rated health. Significant correlates of ADRQL scores included neuropsychiatric symptom severity, functional and cognitive impairment, and caregiver burden and depression. CONCLUSIONS: Correlates of QOL in community-residing PWD depend on who rates the PWD's QOL and which measure is used. Addressing health problems, medication use, and dementia-related unmet needs, reducing functional dependency, and treating neuropsychiatric symptoms in PWD, while reducing caregiver burden and depression, may maximize QOL in those with dementia.

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.

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.

A Descriptive Study of Home Modifications for People with Dementia and Barriers to Implementation.

This study describes home environmental features, safety issues, and health-related modifications in a community dwelling sample of 82 elderly people with dementia. Main barriers to the accessibility of the homes were steps, both inside and outside the house. The majority of the caregivers had made home modifications, which pertained mainly to physical limitations. Home modifications to support cognitive deficits were made to a lesser extent. The main barrier to the implementation of home modifications to accommodate the care recipient's memory loss was skepticism about their usefulness. Regarding the removal of physical barriers, financial constraints were most frequently mentioned.

A new home-based mental health program for older adults: description of the first 100 cases.

BACKGROUND: The Geriatric Psychiatry Outreach (GO) Program began in 2005 and provides in-home psychiatric evaluation and treatment for older adults who have difficulty getting to an office-based setting. METHOD: An initial assessment was conducted on the first 100 patients seen by the program and follow-up treatment was provided as clinically indicated. RESULTS: The mean age of patients seen was 79.7 (SD: 8.2), 74% were women, and the most common psychiatric diagnoses were depression (50%) and dementia (45%), with a mean of 1.4 (SD: 0.6) psychiatric diagnoses per patient. The patients had a mean of 4.8 (SD: 2.9) medical diagnoses and were on a mean of 6.8 (SD: 4.0) prescription and 2.2 (SD: 1.2) nonprescription medications. Patients received a mean of 4.2 (SD: 4.2) in-person visits and a mean of 30.2 (SD: 36.5) additional contacts related to their care, such as phone calls, e-mails, and faxes. CONCLUSIONS: Providing psychiatric services at home for older adults with mental illness is a much needed but rarely available service. Such patients typically have a complex combination of medical and psychiatric diagnoses and benefit from contacts in addition to the face-to-face visits.

Telepsychiatry Use in U.S. Mental Health Facilities, 2010-2017.

OBJECTIVE: The study examined the use of telepsychiatry in U.S. mental health facilities between 2010 and 2017. METHODS: Changes over time in the availability of telepsychiatry were examined by using multiple waves of a national survey of mental health facilities. State and facility correlates of offering telepsychiatry in 2017 were examined. RESULTS: The proportion of state facilities that self-reported offering telepsychiatry increased significantly from 15.2% in 2010 to 29.2% in 2017, with wide variability among states.. In 2017, facilities with telepsychiatry were more commonly publicly owned than to have others forms of ownership (odds ratio [OR]=2.72, 95% confidence interval [CI]=2.47-2.99, p<0.001), although the percentage of privately owned facilities offering telepsychiatry has increased significantly since 2010 (OR=2.94, 95% CI=2.14-4.05, p<.001). Facilities offering telepsychiatry had lower odds of receiving funding from Medicaid (OR=0.86, 95% CI=0.75-0.98, p<0.001) but higher odds of receiving funding from all other sources. Facilities in states that did not fund telepsychiatry had lower odds of offering these services in 2017 (OR=0.57, 95% CI=0.51-0.62, p<0.001). Telepsychiatry was more commonly offered in states with higher proportions of rural population (OR=1.64, 95% CI=1.45-1.85, p<0.001) and designated medically underserved areas (OR=1.36, 95% CI=1.25-1.47, p<0.001), compared with other states. CONCLUSIONS: Nearly twice as many U.S. mental health facilities offered telepsychiatry in 2017 than in 2010. Medicaid funding lagged behind other funding sources, suggesting state administrative barriers. Telepsychiatry was commonly used by facilities in medically underserved and rural areas.

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.

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.