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

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.