MIND: An RCT of care coordination for community-living persons with dementia

Johns Hopkins University, Baltimore MD

Investigators

Linked publications & trials

Abstract

DESCRIPTION (provided by applicant): Over 5 million older Americans currently suffer from Alzheimer's disease and related dementias with 80% receiving care in the community by 15 million informal caregivers (CGs) providing unpaid care.1 Dementia is associated with high health care costs, long term care (LTC) placement, medical complications, reduced quality of life, and CG burden. Patient and family centric care models tailored to dementia that address the multidimensional aspects of dementia management, and link health and community care are understudied but may represent a promising mechanism to address the multiple and on-going needs of this growing population, reduce adverse outcomes such as premature LTC placement, and produce cost benefits. We propose a definitive Phase III efficacy trial to test Maximizing Independence at Home-Streamlined (MIND-S), a home- based, care coordination intervention for community-living PWD and their informal CGs that builds on pilot work. In a pilot trial, MIND was successfully implemented in a diverse sample of 303 community-living individuals with memory disorders and was found to be acceptable to CGs, led to delays in time to transition from home, improved PWD QOL, and CG time savings.73,78 We now propose a 24-month, prospective, single- blind, parallel group, RCT evaluating MIND-S in a cohort of 300 community-living PWD and their informal CGs in the Greater Baltimore area. Intervention dyads will receive 18 months of care coordination by an interdisciplinary team comprised of trained non-clinical community workers (Interventionists), a psychiatric nurse, and geriatric psychiatrist. The intervention involves 4 key components: identification of needs and individualized care planning (PWD and CG needs); dementia education and skill building; coordination, referral and linkage of services; and care monitoring. Aim 1: To determine the efficacy of MIND-S on time to long term care (LTC) placement or death at 18 months and 24 months (6 months post treatment). Aim 2: To estimate MIND-S cost and assess whether it results in net financial benefits by conducting a cost-offset analysis taking the societal perspective at 18 months and 24 months (6 months post treatment). Aim 3: To determine the efficacy of MIND-S on PWD unmet care needs, neuropsychiatric symptoms (NPS), and quality of life (QOL), and on CG unmet needs and burden at 18 and 24 months (6 months post treatment). Exploratory aims: To explore whether the moderators and mediators of the intervention's effect on time to LTC or death. This proposal brings together an internationally and nationally recognized group of researchers with complimentary expertise in community-based dementia care, clinical trials, health economics, and biostatistics. If proven efficacious and cost efficient, the MIND-S model has the potential to change how dementia care services are provided and coordinated at the community level and serve as a national model. It is responsive to the National Alzheimer's Plan Act (Public Law 111-375) calling for development and testing of new comprehensive models of dementia care.