Maximizing Independence at Home (MIND at Home)

Maximizing Independence at Home (MIND at Home): Dementia Care at Home Study

Funded by a unique private philanthropy and public coalition through THE ASSOCIATED: Jewish Community Federation of Baltimore, this project seeks to develop effective ways to deliver dementia care to older adults with memory disorders who live in the community. MIND at Home is an 18 month intervention research study whose goals are two-fold: To partner with community organizations to help proactively identify older adults in the Baltimore community who may need help related to memory disorders; To find out if providing person-centered, coordinated care will help older adults with memory disorders remain at home longer, as well other possible benefits. The investigators hypothesize that individuals with memory disorders that receive person-centered, coordinated care will have fewer unmet dementia-related needs, improved quality of life and function, fewer behavioral and depressive symptoms, and will be able to remain in their homes longer compared to individuals who receive augmented usual care.

Study Overview

• Status: Completed
• Conditions: Dementia; Memory Disorders
• Intervention / Treatment: Behavioral: care coordination

• Study Type: Interventional
• Enrollment (Actual): 303
• Phase: Phase 2; Phase 3

Contacts and Locations

Study Locations

• United States
  • Maryland
    • Baltimore, Maryland, United States, 21205
      • Johns Hopkins University

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 70 years and older (Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

Description

Inclusion Criteria:

• 70+ years old
• Community living (within one of 28 zip codes in Baltimore)
• Has memory disorder
• Has identified study partner willing to participate
• English-speaking

Exclusion Criteria:

• Situation at the time of referral is an emergency with risk of danger to individual or others
• Presence of delirium or other rule outs for memory disorder

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Treatment
• Interventional Model: Parallel Assignment
• Masking: Single

Number of Arms

1

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
No Intervention: Augmented Usual Care	Behavioral: care coordination; dementia-related care coordination

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Change in unmet dementia-related needs from Baseline to 18 months	Unmet dementia-related needs as measured by the Johns Hopkins Dementia Care Needs Assessment (JHDCNA), clinican-based assessment of 21 domains (92 individual items)	18 months

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Change in quality of life from Baseline to 18 months	Participant quality of life measured by Quality of Life in Alzheimers Disease (QOL-AD) and Alzheimer's Disease Related Quality of life scale (ADRQL). Caregiver quality of life measured by SF-12.	18 month
length of stay	Length of stay in the community assessed by number of days from initial study assessment to end of study observation or to date that the subject leaves their community-based residence (e.g. move to nursing home, assisted living, death) prior to end of study observation.	18 months
neuropsychiatric behavior symptoms from baseline to 18 months	Neuropsychiatric behavior measured by the Neuropsychiatry Inventory Questionnaire	18 month
day-to-day function from baseline to 18 months	Day-to-day function assessed by the Instrumental Activities of Daily Living Scale and the Psycho-geriatric Dependency Rating Scale	18 month
health care utilization from baseline to 18 months	Inpatient, residential, Alzheimer Disease-related, mental health, and medical health care use measured by the SURFS	18 month
depression from baseline to 18 months	Participant depression measured by the Cornell Scale for Depression (CSDD) in Dementia. Caregiver depression measured by the Geriatric Depression Scale (GDS).	18 month

Collaborators and Investigators

• Sponsor: Johns Hopkins University
• Collaborators: National Institute of Mental Health (NIMH); National Institute on Aging (NIA); Leonard & Helen R. Stulman Charitable Foundation; Jewish Community Services; Jewish Community Federation of Baltimore; Levindale; The Harry & Jeanette Weinberg Foundation, Inc.; Hoffberger Foundation; Hirschhorn Foundation; Lois and Irving Blum Foundation; Joseph and Harvey Meyerhoff Family Charitable Funds; The Henry and Ruth Blaustein Rosenberg Foundation; Baltimore County Department of Aging
• Investigators: Principal Investigator: Quincy M Samus, PhD, Johns Hopkins University

Publications and helpful links

General Publications

• Johnston D, 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 Geriatr Psychiatry. 2011 Mar;26(3):292-8. doi: 10.1002/gps.2527. Epub 2010 Jul 23.
• Marquardt G, Johnston D, Black BS, Morrison A, Rosenblatt A, Lyketsos CG, Samus QM. Association of the spatial layout of the home and ADL abilities among older adults with dementia. Am J Alzheimers Dis Other Demen. 2011 Feb;26(1):51-7. doi: 10.1177/1533317510387584.
• Marquardt G, Johnston D, Black BS, Morrison A, Rosenblatt A, Lyketsos CG, Samus QM. A Descriptive Study of Home Modifications for People with Dementia and Barriers to Implementation. J Hous Elderly. 2011 Jan 1;25(3):258-273. doi: 10.1080/02763893.2011.595612.
• 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. Qual Life Res. 2012 Oct;21(8):1379-89. doi: 10.1007/s11136-011-0044-z. Epub 2011 Oct 26.
• Samus QM, Johnston D, Black BS, Hess E, Lyman C, Vavilikolanu A, Pollutra J, Leoutsakos JM, 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. Am J Geriatr Psychiatry. 2014 Apr;22(4):398-414. doi: 10.1016/j.jagp.2013.12.175. Epub 2014 Jan 4.
• 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 maximizing independence at home study. J Am Geriatr Soc. 2013 Dec;61(12):2087-2095. doi: 10.1111/jgs.12549.

Helpful Links

• Maryland Department of Health and Mental Hygiene Clinical Innovations
• Johns Hopkins University press release (2/10/14)

Study record dates

Study Major Dates

• Study Start (Actual): July 1, 2008
• Primary Completion (Actual): December 1, 2011
• Study Completion (Actual): December 1, 2012

Study Registration Dates

• First Submitted: January 24, 2011
• First Submitted That Met QC Criteria: January 25, 2011
• First Posted (Estimate): January 26, 2011

Study Record Updates

• Last Update Posted (Actual): November 6, 2018
• Last Update Submitted That Met QC Criteria: November 2, 2018
• Last Verified: November 1, 2018

More Information

Terms related to this study

• Keywords: older adults; intervention; care coordination; community; caregiver; unmet needs; dementia care
• Additional Relevant MeSH Terms: Mental Disorders; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurologic Manifestations; Neurobehavioral Manifestations; Neurocognitive Disorders; Dementia; Memory Disorders
• Other Study ID Numbers: NA_00012829; 90032824 (Other Identifier: Other)