Advancing Coordination of Home and Community based Services for the ADRD Population

Project Summary Abstract
Older adults with Alzheimer's disease and related dementias (ADRD) rely on a broad array of health and social
services to address needs ranging from traditional medical care to supports for basic activities of daily living. A
critical set of services is those that allow individuals with ADRD to remain at home as opposed to residing in an
institutional setting. Referred to as home- and community-based services (HCBS), these services span from
clinical services (e.g., skilled home health, in-home palliative care) to services that focus on custodial and social
needs (e.g., home health aides, adult day, respite). Despite their widespread use, there is little data
characterizing the organizations that deliver HCBS, or how well they coordinate with traditional institutional
providers that also care for those with ADRD. Lack of accessible data precludes investigation into availability of
HCBS across different geographies, scope of services offered, organizational relationships, quality, efficiency,
and beyond. Addressing this gap is particularly essential for the ADRD population because they use HCBS at
such high levels.
Our proposal, submitted in response to NIA PAR-19-070, focuses on HCBS for those with dementia and offers
a multi-method approach to capture systematic data on HCBS organizations and how well they engage in care
coordination. Our approach leverages newly-available Medicaid claims/encounter data for HCBS to generate
the first publicly-available, national-level datasets that list and characterize the organizations delivering HCBS to
the ADRD population. Next, we will identify the organizational networks - including HCBS and institutional
organizations – based on which organizations care for the same individuals. Prior work has defined networks of
clinical providers that resulted in widely-used measures of healthcare markets (e.g., hospital referral regions).
However, the definitions do not include HCBS. Defining networks that include HCBS and serve a shared ADRD
population will allow us to characterize the features of the networks (e.g., size, density of ties) in addition to
evaluating outcomes (e.g., hospital readmissions, emergency department visits) for those cared for by these
networks. Finally, by measuring and comparing care coordination activities in networks with better and worse
outcomes (via a large-scale survey of HCBS organizations in those networks), we can identify actionable policy
and practice-based strategies that improve care for a vulnerable population. Taken together, our results will
inform policy and practice strategies to improve delivery of HCBS for the ADRD population that are currently not
well coordinated in relation to our complex and fragmented healthcare delivery system.

Grant Number: 5R01AG075929-05
NIH Institute/Center: NIH
Principal Investigator: JULIA ADLER-MILSTEIN