MIND: Care Coordination for Community-living Person With Dementia
Condition: Dementia; Caregiver Burden
MeSH terms: Dementia; Caregiver Burden
Study type: Interventional

Summary: 
      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.
    

Detailed 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.
    

Intervention name(s): MIND-S Intervention; Augmented Usual Care
Intervention type(s): Behavioral; Other
Intervention description(s): MIND at Home is a home-based, care coordination that focuses on persons with dementia living at home and their family caregivers. Its goal is to help persons age in place safely while increasing quality of life. Delivered over 18 months, MIND systematically assesses and addresses unmet care needs of persons with dementia and their caregivers which are known to be linked to poor health and quality of life outcomes, and that put people at risk for long term care placement. The needs addressed in the MIND program cover a wide range of care domains, ranging from home and medication safety, to cognitive and behavior symptoms management, meaningful activities and legal considerations. The care team made up of a memory care coordinator, nurse, and physician. Patients and families receive care coordination assistance, resource referrals, dementia care education and behavior management skills training, emotional support and problem-solving, and home safety education; Augmented usual care consists of an initial full in-home needs assessment for dementia-related needs and a written report that identifies unmet needs and provides recommendations for care sent to the participant and the primary care physician. Augmented usual care participants also receive an Aging and Caregiver Resource Guide that includes program and contact information for several local and national aging service organizations (e.g., Alzheimer's Association, Administration on Aging, Centers for Medicare and Medicaid). This condition likely exceeds the usual level of intervention in primary care settings
Other intervention name(s): MIND at Home - Streamlined
Allocation: Randomized
Intervention model: Parallel Assignment
Masking: Single (Outcomes Assessor)
Primary purpose: Health Services Research
Keywords: care coordination; quality of life; community-based; care quality; Long term care placement; memory care; Neuropsychiatric behaviors