Caregiver Burden, Dementia
Conditions
Keywords
care coordination, quality of life, community-based, care quality, Long term care placement, memory care, Neuropsychiatric behaviors
Brief 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.
Interventions
BEHAVIORALMIND-S Intervention
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
OTHERAugmented Usual Care
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
Sponsors
Thomas Jefferson University
National Institute on Aging (NIA)
Johns Hopkins University
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
SINGLE (Outcomes Assessor)
Eligibility
Sex/Gender
ALL
Age
21 Years to 120 Years
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Time to long term care (LTC) placement or death | 18 months | Time to long term care placement or death |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| PWD unmet care needs | 18 months | MIND at Home patient total unmet care needs as measured by the Johns Hopkins Dementia Care Needs Assessment 2.0 from baseline to 18 months compared to usual care group patient total unmet care needs from baseline to 18 months. (difference in slopes) |
| Neuropsychiatric symptoms (NPS) | 18 months | MIND at Home patient Neuropsychiatric symptoms (NPS) as measured by the Neuropsychiatric Inventory-Questionnaire from baseline to 18 compared to usual care group patient NPS scores from baseline to 18 months. (difference in slopes) |
| Quality of life (QOL) | 18 months | MIND at Home patient QOL as measured by the QOL-AD from baseline to 18 months compared to usual care group patient scores from baseline to 18 months (difference in slopes) |
| Cost-offset for total direct and indirect care costs | 18 months | Estimates of cost-offset for the MIND-S program will be the cost-offset of MIND-S, defined as the net financial benefit of the program on total self-reported direct and indirect care costs. This will be calculated as the difference in the sum of all costs between MIND-S group and the sum of all costs in the augmented usual care from T1-T5 (baseline-18 months). |
| Subjective caregiver burden | 18 months | MIND at Home caregiver burden as measured by the Zarit Burden Interview from baseline to 18 months compared to usual care group patient burden from baseline to 18 months. (difference in slopes) |
| Objective caregiver burden | 18 months | MIND at Home caregiver burden as measured by time spent caregiving estimates from baseline to 18 months compared to usual care group time from baseline to 18 months. (difference in slopes) |
| Time to long term care (LTC) placement or death | 24 months | Time to long term care placement or death |
| Caregiver care unmet needs | 18 months | MIND at Home caregiver total unmet care needs as measured by the Johns Hopkins Dementia Care Needs Assessment 2.0 from baseline to 18 months compared to usual care group patient total unmet care needs from baseline to 18 months. (difference in slopes) |
Countries
United States
Outcome results
None listed