PROJECT SUMMARY/ABSTRACT
Of an estimated 5.4 million older adults with Alzheimer’s Disease and Related Dementias (ADRD) in the
US, 67% reside in the community with unique and significant care needs. Medicare-funded Home Health (HH)
delivers skilled nursing, therapy, and personal care aide services in the patient’s home and is one of few
affordable and accessible options for home-based care among those with ADRD. Of the 3.4 million Medicare
beneficiaries who access HH each year, 31% have ADRD. HH patients with ADRD receive more intensive
care, yet are more likely to experience adverse outcomes including institutionalization and hospitalization.
Thus, there is critical need to develop tailored HH interventions to improve outcomes for patients with ADRD.
In 87% of HH episodes, clinicians report needing family caregiver assistance to implement the plan of care
and engaging/supporting family caregivers during HH contributes to improved care outcomes—including
reduced readmission risk and greater patient and family satisfaction. Family caregivers are a crucial resource
for those with ADRD, including during HH. However, there is currently a dearth of information regarding ADRD
family caregivers’ specific roles and support needs during HH. Analyses of ADRD caregiver involvement in
care delivery have focused on the ambulatory setting and hold limited applicability for HH due to this setting’s
unique payment and care delivery structures. Prior work examining caregiver activities and training needs
during HH did not specifically examine those with ADRD. HH patients with ADRD (and their caregivers) merit
targeted study given: the unique challenges of ADRD caregiving, ADRD patients’ higher risk for adverse HH
outcomes, and prior work indicating that caregivers are more likely to need training during HH if assisting a
patient with cognitive impairment.
The goal of this project is to describe ADRD caregivers’ role and training needs during HH, and to determine
how caregiver availability and capacity impact HH care delivery and outcomes for patients with ADRD.
Availability refers to caregivers’ willingness to assist and how often they are present in the home. Capacity
refers to caregivers’ identified training needs related to specific caregiving activities. We will use a national
sample of Medicare beneficiaries with diagnosed ADRD (determined via Medicare claims) who received HH in
2018. We will analyze linked HH patient assessment, Medicare claims, and HH agency administrative data for
this sample to 1) characterize caregiver involvement (including types of assistance provided, availability, and
capacity) during HH; 2) determine the impact of caregiver availability and capacity on HH care delivery for
patients with ADRD; and 3) assess the impact of caregiver availability and capacity on HH outcomes for
patients with ADRD. Findings will provide novel foundational evidence regarding ADRD caregivers’ role and
support needs during HH, informing the development of targeted interventions to improve care for HH patients
with ADRD by better engaging and supporting their family caregivers.
