Understanding and Improving Palliative Care Delivery among Persons with Alzheimer's Disease and Related Dementias (ADRD): A Mixed-Methods Study

NIH Pandemic-Era Grants

Pandemic Era Grants

2024

Document text

Principal Investigator: Donald R Sullivan
Organization: OREGON HEALTH & SCIENCE UNIVERSITY
Fiscal Year: 2024
Award: $753,600
Funding agency: National Institute on Aging

PROJECT SUMMARY
The over 6 million Americans with Alzheimer’s Disease and Related Dementias (ADRD) are
particularly vulnerable to burdensome, low-quality, and costly care at the end of life. Research
has highlighted the need to increase the use of palliative care in patients with ADRD as they
have needs (e.g., symptom burden) equal to those of advanced cancer patients but are much
less likely to receive palliative care. Hospice is a component of palliative care usually delivered
at the very end of life. An innovative model of hospice delivery exists, termed concurrent care,
where hospice is delivered alongside usual medical care capitalizing on the benefits of an
integrated approach. Concurrent care seems effective at enhancing outcomes in patients with
advanced cancer, however, a significant knowledge gap exists regarding the impact of
concurrent care among persons with ADRD. Understanding the impact of concurrent care on
patient and family outcomes can provide opportunities to improve the quality of end-of-life (EOL)
care and to inform future health policy. The central hypothesis of this proposal is that modifiable
organizational and clinician characteristics and care processes are associated with increased
use of concurrent care and that concurrent care is associated with high-quality end-of-life care
for persons with ADRD. We will address this hypothesis using a mixed-methods, concurrent
triangulation study design using both quantitative and qualitative methods in the Veterans
Affairs (VA) Healthcare System. Aim 1 will determine temporal trends in concurrent care and the
patient, facility, and market characteristics (including regional patterns in care intensity and
hospice resources) associated with increased use of concurrent care, Aim 2 will determine the
association of concurrent care with patient and family-centered outcomes using a cross-
temporal propensity score matching difference-in-difference approach, and Aim 3 will focus on
family members of ADRD patients and their clinicians’ EOL care experiences using qualitative
methods. The results of this proposal will be impactful because we will identify modifiable
factors as targets for clinical and policy interventions to improve the quality of EOL care in
ADRD. Our mixed-methods approach will allow us to better understand contextual factors that
influence EOL care quality and the use of concurrent care to inform future palliative care and
decision-support interventions. This study will provide important policy-relevant information on
concurrent care outcomes relevant to the mission of the National Institutes of Aging to support
research concerned with the quality and continuing care of patients with ADRD and their
families.

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