D-CARE: The Dementia Care Study: Design of a Pragmatic Trial of the Effectiveness and Cost Effectiveness of Health System-Based Versus Community-Based Dementia Care Versus Usual Dementia Care.

BACKGROUND/OBJECTIVES: Although several approaches have been developed to provide comprehensive care for persons living with dementia (PWD) and their family or friend caregivers, the relative effectiveness and cost effectiveness of community-based dementia care (CBDC) versus health system-based dementia care (CBDC) and the effectiveness of both approaches compared with usual care (UC) are unknown. DESIGN: Pragmatic randomized three-arm superiority trial. The unit of randomization is the PWD/caregiver dyad. SETTING: Four clinical trial sites (CTSs) based in academic and clinical health systems. PARTICIPANTS: A total of 2,150 English- or Spanish-speaking PWD who are not receiving hospice or residing in a nursing home and their caregivers. INTERVENTIONS: Eighteen months of (1) HSDC provided by a nurse practitioner or physician's assistant dementia care specialist who works within the health system, or (2) CBDC provided by a social worker or nurse care consultant who works at a community-based organization, or (3) UC with as needed referral to the Alzheimer's Association Helpline. MEASUREMENTS: Primary outcomes: PWD behavioral symptoms and caregiver distress as measured by the Neuropsychiatric Inventory Questionnaire (NPI-Q) Severity and Modified Caregiver Strain Index scales. SECONDARY OUTCOMES: NPI-Q Distress, caregiver unmet needs and confidence, and caregiver depressive symptoms. Tertiary outcomes: PWD long-term nursing home placement rates, caregiver-reported PWD functional status, cognition, goal attainment, "time spent at home," Dementia Burden Scale-Caregiver, a composite measure of clinical benefit, Quality of Life of persons with dementia, Positive Aspects of Caregiving, and cost effectiveness using intervention costs and Medicare claims. RESULTS: The results will be reported in the spring of 2024. CONCLUSION: D-CARE will address whether emphasis on clinical support and tighter integration with other medical services has greater benefit than emphasis on social support that is tied more closely to community resources. It will also assess the effectiveness of both interventions compared with UC and will evaluate the cost effectiveness of each intervention.

Training for In-Home Supportive Services Caregivers in an Underserved Area.

Despite the complexity of care associated with older adults who have been diagnosed with Alzheimer's disease and related dementias, many in-home paid caregivers receive little to no training in competent care for these older adults. The In-Home Supportive Services program in California provides care for elderly, blind, and disabled people with the goal of ensuring the care recipients may remain safely in their own homes. Yet, these caregivers are not required to receive training in any specific disease or condition prior to providing caregiving services. A Geriatrics Workforce Enhancement Program and the Riverside County Department of Social Services jointly developed and implemented three different interactive, community-based, knowledge and skills-based training courses for IHSS caregivers. Analysis of pre/post course evaluations across all three courses demonstrated statistically significant gains in knowledge and self-rated skills among the participants.

Health Care Utilization and Cost Outcomes of a Comprehensive Dementia Care Program for Medicare Beneficiaries.

Importance: An estimated 4 to 5 million Americans have Alzheimer disease or another dementia. Objective: To determine the health care utilization and cost outcomes of a comprehensive dementia care program for Medicare fee-for-service beneficiaries. Design, Setting, and Participants: In this case-control study, we used a quasiexperimental design to compare health care utilization and costs for 1083 Medicare fee-for-service beneficiaries enrolled in the University of California Los Angeles Health System Alzheimer and Dementia Care program between July 1, 2012, and December 31, 2015, with those of 2166 similar patients with dementia not participating in the program. Patients in the comparison cohort were selected using the zip code of residence as a sampling frame and matched with propensity scores, which included demographic characteristics, comorbidities, and prior-year health care utilization. We used Medicare claims data to compare utilization and cost outcomes for the 2 groups. Interventions: Patients in the dementia care program were comanaged by nurse practitioners and physicians, and the program consisted of structured needs assessments of patients and their caregivers, creation and implementation of individualized dementia care plans with input from primary care physicians, monitoring and revising care plans, referral to community organizations for dementia-related services and support, and access to a clinician for assistance and advice 24 hours per day, 7 days per week. Main Outcomes and Measures: Admissions to long-term care facilities; average difference-in-differences per quarter over the 3-year intervention period for all-cause hospitalization, emergency department visits, 30-day hospital readmissions, and total Medicare Parts A and B costs of care. Program costs were included in the cost estimates. Results: Program participants (n = 382 men, n = 701 women; mean [SD] age, 82.10 [7.90] years; age range 54-101 years) were less likely to be admitted to a long-term care facility (hazard ratio, 0.60; 95% CI, 0.59-0.61) than those not participating in the dementia care program (n = 759 men, n = 1407 women; mean [SD] age, 82.42 [8.50] years; age range, 34-103 years). There were no differences between groups in terms of hospitalizations, emergency department visits, or 30-day readmissions. The total cost of care to Medicare, excluding program costs, was $601 less per patient per quarter (95% CI, -$1198 to -$5). After accounting for the estimated program costs of $317 per patient per quarter, the program was cost neutral for Medicare, with an estimated net cost of -$284 (95% CI, -$881 to $312) per program participant per quarter. Conclusions and Relevance: Comprehensive dementia care may reduce the number of admissions to long-term care facilities, and depending on program costs, may be cost neutral or cost saving. Wider implementation of such programs may help people with dementia stay in their communities.

Unmet needs of caregivers of individuals referred to a dementia care program.

OBJECTIVES: To characterize caregiver strain, depressive symptoms, and self-efficacy for managing dementia-related problems and the relationship between these and referring provider type. DESIGN: Cross-sectional observational cohort. SETTING: Urban academic medical center. PARTICIPANTS: Caregivers of community-dwelling adults with dementia referred to a dementia care management program. MEASUREMENTS: Caregivers were surveyed and completed the Patient Health Questionnaire (PHQ-9) about themselves; the Modified Caregiver Strain Index; the Neuropsychiatric Inventory Questionnaire, which measures patient symptom severity and related caregiver distress; and a nine-item caregiver self-efficacy scale developed for the study. RESULTS: Of 307 patient-caregiver dyads surveyed over a 1-year period, 32% of caregivers reported confidence in managing dementia-related problems, 19% knew how to access community services to help provide care, and 28% agreed that the individual's provider helped them work through dementia care problems. Thirty-eight percent reported high levels of caregiver strain, and 15% reported moderate to severe depressive symptoms. Caregivers of individuals referred by geriatricians more often reported having a healthcare professional to help work through dementia care problems than those referred by internists, family physicians, or other specialists, but self-efficacy did not differ. Low caregiver self-efficacy was associated with higher caregiver strain, more caregiver depressive symptoms, and caring for an individual with more-severe behavioral symptoms. CONCLUSION: Most caregivers perceived inadequate support from the individual's provider in managing dementia-related problems, reported strain, and had low confidence in managing caregiving. New models of care are needed to address the complex care needs of individuals with dementia and their caregivers.

Coordinated care management for dementia in a large academic health system.

Alzheimer's disease and other dementias are chronic, incurable diseases that require coordinated care that addresses the medical, behavioral, and social aspects of the disease. With funding from the Center for Medicare and Medicaid Innovation, we launched a dementia care program in which a nurse practitioner acting as a dementia care manager worked with primary care physicians to develop and implement a dementia care plan that offers training and support to caregivers, manages care transitions, and facilitates access to community-based services. Postvisit surveys showed high levels of caregiver satisfaction. As program enrollment grows, outcomes will be tracked based on the Triple Aim developed by the Institute for Healthcare Improvement and adopted by the Centers for Medicare and Medicaid Services: better care, better health, and lower cost and utilization. The program, if successful at achieving the Triple Aim, may serve as a national model for how dementia and other chronic diseases can be managed in partnership with primary care practices. It may also inform policy and reimbursement decisions for the recently released transitional care management codes and the complex chronic care management codes to be released by Medicare in 2015.