Maximizing Independence at Home Dementia Care Coordination Program (MIND at Home)

Unmet Need
Dementia is a leading cause of dependency and mental impairment among the elderly population, one of the most costly chronic conditions in the U.S., and ranks as the 5^th leading cause of death among persons 65 and over. Over 70% of the 5.4 million Americans who suffer from dementia are cared for at home by an estimated 15 million informal family caregivers (CGs).  Dementia is strongly associated with a number of serious and costly adverse outcomes including medical and behavioral complications, disproportionate use of acute health care services, poor quality of life, and premature long term care placement. Informal family caregivers, who provide much of the direct care for persons living with dementia also suffer adverse physical, emotional, social, and financial impacts. While effective dementia management care options are available, delivery of care is often fragmented and suboptimal, leading to excesses in adverse outcomes and higher health care costs.
 
Technology Overview
Maximizing Independence at Home (MIND at Home^TM) is a comprehensive, home-based care coordination intervention program for community-residing persons with Alzheimer disease or related dementias and their family caregivers. The MIND at Home program bundle is a set of intellectual properties, written materials (assessments, protocols, templates, outreach and engagement), and a customized web-based care management application designed to systematically assess and help address unmet needs that may be barriers to persons with dementia remaining in their home, while maintaining their health and wellbeing and that of their caregiver. Developed by researchers at Johns Hopkins University, this well-researched model has been shown to 1) extend the time that a person with dementia remains at home for almost two years (as opposed to a transition from home or death), 2) reduce dementia-related care needs for persons with dementia and their family caregiver, 3) improve their quality of life, and 4) reduce caregiver burden (objective).

Stage of Development
In a randomized controlled MIND at Home care coordination was a success and was associated with significant benefits for persons living in the community suffering from memory disorders. Newer research studies funded by an innovation grant from the Centers for Medicare and Medicaid Innovation (CMMI) and the National Institute are currently being analyzed. The program is also currently being implemented in an operational pilot in a health plan.
 
Publications
Johnston DJ, Samus QM, Morrison A, Leoutsakos JS, Hicks K, Handel S, Rye R, Robbins B, Rabins PV, Lyketsos CG, Black BS. Identification of community-residing individuals with dementia and their unmet needs for care. Int J Geriatric Psychiatry. 2011; 26(3): 292-8. PMCID: PMC3039061
 
Marquardt G, Johnston DJ, Black B., Morrison A, Rosenblatt A, Lyketsos C, Samus, QM. Association of the spatial layout of the home and ADL abilities among older adults with dementia. American Journal of Alzheimer’s Disease & Other Dementias. 2011; 26(1): 51-7. PMCID: PMC3143576
 
Marquardt G, Johnston DJ, Black B., Morrison A, Rosenblatt A, Lyketsos C, Samus, QM. A descriptive study of Home Modifications for People with Dementia and barriers to implementation Journal of Housing for the Elderly. 2011; 25(3): 258–273. PMCID: PMC3167170
 
Black BS, Johnston D, Morrison A, Rabins PV, Lyketsos CG, Samus QM.  Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures.  Quality of Life Research, 2012; 21(8): 1379-1389. PMCID: PMC3296880
 
Black BS, Johnston D, Rabins PV, Morrison A, Lyketsos C, Samus QM. Unmet Needs of Community-Residing Persons with Dementia and Their Informal Caregivers: Findings from the MIND at Home Study. Journal of the American Geriatrics Society. 2013; 61(12):2087-2095. PMCID: In Process. NIHMSID #565158.
 
Samus QM, Johnston D, Black BS,  Hess E, Lyman C, Vavilikolanu A, Pollutra J, Leoutsakos J-M, Gitlin LN, Rabins PV, Lyketsos CG. A multidimensional home-based care coordination intervention for elders with memory disorders: the Maximizing Independence at Home (MIND) Pilot Randomized Trial. American Journal of Geriatric Psychiatry. 2014; 22(4):398-414. PMCID: In Process. NIHMSID #565040
 
Tanner JA, Black BS, Johnston D, Hess E, Gitlin LN, Rabins PV, Lyketsos CG, Samus QM. A randomized controlled trial of a community-based dementia care coordination intervention: effects of MIND at Home on caregiver outcomes. American Journal of Geriatric Psychiatry. 2014. PMCID: In process.
 
Hughes TB, Black BS, Albert M, Gitlin LN, Johnston DM, Lyketsos CG, Samus QM. Correlates of objective and subjective measures of caregiver burden among dementia caregivers: influence of unmet patient and caregiver dementia-related care needs. International Psychogeriatrics. 2014; 26(11):1875-83. PMCID: PMC4283462
 
Hodgson NA, Black BS, Johnston D, Lyketsos C, Samus QM. Comparison of Unmet Care Needs across The Dementia Trajectory: Findings from The Maximizing Independence at Home Study. J Geriatrics Palliative Care 2014;2(2): 5.
 
Samus QM, Amjad H, Johnston D, Black BS, Bartels S, Lyketsos CG. A multipronged, adaptive approach for the recruitment of diverse community residing-elders with memory impairment: the MIND at Home experience. Am J Geriatr Psychiatry. Published online January 30, 2015.
 
Davis K, Buttorff C, Leff B, Samus QM, Szanton S, Wolff JL.   Improving care for high-cost Medicare beneficiaries: New care delivery models hold promise for Medicare Advantage plans and Accountable Care Organizations. Journal of Managed Care. In Press.
 
Amjad H, Wong SK, Roth DL, et al. Health Services Utilization in Older Adults with Dementia Receiving Care?Coordination: The MIND at Home Trial. Health Serv Res. January 2017. doi:10.1111/1475-6773.12647.
 
Samus QM, Black BS, Reuland M, et al. Caregivers, MIND at Home-Streamlined: Study protocol for a randomized trial of home-based care coordination for persons with dementia and their caregivers. Contemp Clin Trials. IN PRESS.
 
Samus QM, Davis K, Willink A, et al. Comprehensive home-based care coordination for vulnerable elders with dementia: Maximizing Independence at Home-Plus—Study protocol. Int J Care Coord. 2017;20(4):123-134. doi:10.1177/2053434517744071.
 
 

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