MIND: Care Coordination for Community-living Person With Dementia (MIND at Home)

Johns Hopkins University

Status: Completed

Conditions: Caregiver Burden; Dementia

Treatments: Other: Augmented Usual Care; Behavioral: MIND-S Intervention

Study type: Interventional

Funder types: Other; NIH

Identifiers

NCT02396082

IRB00041744

90059611 (Other Identifier)

1R01AG046274-01A1 (U.S. NIH Grant/Contract)

Details and patient eligibility

About

This is a 24-month, prospective, single- blind, randomized controlled trial evaluating the MIND at Home-streamlined dementia care coordination intervention (called MIND-S) in a cohort of 300 community-living persons with dementia and their family caregivers in the Greater Baltimore area. Participants receiving MIND-S will get 18 months of care coordination by an interdisciplinary team comprised of trained memory care coordinators (non-clinical), a psychiatric nurse, and geriatric psychiatrist. The intervention involves 4 key components: identification of needs and individualized care planning (persons with dementia (PWD) and care giver (CG) needs); dementia education and skill building; coordination, referral and linkage of services; and care monitoring.Participants in the comparison group will receive an initial in-home needs assessment and will be given the written results along with any recommendations for care that are indicated.

Full description

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. 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.

This is a definitive Phase III efficacy trial to test Maximizing Independence at Home-Streamlined (MIND-S), a home- based, care coordination intervention for community-living persons with dementia (PWD) and their family CGs that builds on pilot work. In a pilot trial, MIND at Home 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 quality of life, and CG time savings.

The current project is a 24-month, prospective, single- blind, parallel group, randomized controlled trial evaluating MIND-S in a cohort of 300 community-living PWD and their informal CGs in the Greater Baltimore area. Participants receiving MIND-S will get up to 18 months of care coordination by an interdisciplinary team comprised of trained memory care coordinators (non-clinical), 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.Participants in the comparison group will receive an initial in-home needs assessment and will be given the written results along with any recommendations for care that are indicated.

Enrollment: 300 estimated patients

Sex: All

Ages: 21 to 120 years old

Volunteers: No Healthy Volunteers

Inclusion and exclusion criteria

Inclusion Criteria for PWD:

• Meets criteria for all-cause dementia using standard assessments and diagnostic criteria
• English speaking
• Has a reliable informal caregiver available and willing to participate
• Living at home the Greater Baltimore area

Exclusion Criteria:

• Planned move from home in less than 6 months
• On hospice or has end stage disease (bed-bound and non-communicative)
• Enrolled in another clinical trial for dementia or associated symptoms

Trial design

Primary purpose: Health Services Research

Allocation: Randomized

Interventional model: Parallel Assignment

Masking: Single Blind

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300 participants in 2 patient groups

MIND-S Intervention

Experimental group

Description:

Participants (persons with dementia (PWD) and their family caregiver (CG)) in this group will receive up to 18 months of the MIND-S dementia care coordination intervention by an interdisciplinary team comprised of trained memory care coordinators (non-clinical), 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.

Treatment:

Behavioral: MIND-S Intervention

Augmented Usual Care

Other group

Description:

Participants (persons with dementia (PWD) and their family caregiver (CG)) and their primary care physicians in this group will receive an initial in-home needs assessment and then a written report indicating any unmet care needs identified and potential recommendations of care for meeting those needs. They will be able to pursue any interventions or treatments they or their treating physicians deem appropriate. They will also receive a standardized Aging and Caregiver Resource Guide developed in the previous MIND trial. The study team will perform another in-home needs assessment at 18 months and the written report along with recommendations for care will be provided to the family and the PWD's primary care physician.

Treatment:

Other: Augmented Usual Care