Care & Caregiving: Palliative care research networks (Milestone 13.G)
Timeline Start - End2015 - 2022
Research Implementation AreaResearch on Care and Caregiver Support
Leverage existing palliative care research networks to develop and advance interventions for palliative and hospice care of persons with advanced dementia and their families.
Launch cross-disciplinary projects to design and test clinical interventions and models of palliative and hospice care for persons with advanced dementia and their families
These programs should address needs across diverse cultural subgroups, care settings, and rural/urban locales.
Summary of Key Accomplishments
Through a partnership with the owner of a large, nationwide network of long-term services and supports facilities, the NIA-funded Penn Roybal Center on Palliative Care in Dementia provides research infrastructure and funds pilot studies to develop, test, and implement palliative care interventions for PLWD and their family caregivers using behavioral economics and data science strategies. Through another infrastructure project, the Claude D. Pepper Older Americans Independence Center at the Icahn School of Medicine at Mount Sinai conducts and facilitates interdisciplinary research on palliative care and created a national network of geriatric palliative care researchers in collaboration with Mount Sinai's National Palliative Care Research Center. NIA has also funded multiple research projects with a variety of populations examining different aspects of intervention development for palliative and hospice care, including those focused on improving advance care planning for PLWD, adding external specialty palliative care support to PLWD in nursing homes, improving palliative care at the health systems level, and promoting quality end-of-life experiences, as well as assessing and addressing lucidity in dementia.
The key accomplishments summary is current as of March 2022.
- PAR-15-348: Research on Informal and Formal Caregiving for Alzheimer's Disease (R01)
- PAR-18-027: Research on Informal and Formal Caregiving for Alzheimer's Disease (R01)
- RFA-AG-19-009: NIA AD/ADRD Health Care Systems Research Collaboratory (U54)
- PAR-18-585: Pragmatic Trials for Dementia Care in Long-term Services and Support (LTSS) Settings
- RFA-AG-19-007: Roybal Centers for Translational Research on Dementia Care Provider Support
- PAS-18-030: Improving Quality of Care and Quality of Life for Persons with Alzheimer’s Disease and Related Dementias at the End of Life (R01 Clinical Trial Optional)
- PAS-17-026: Improving Quality of Care and Quality of Life for Persons with Alzheimer’s Disease and Related Dementias at the End of Life (R03 Clinical Trial Optional)
- RFA-AG-20-016: Lucidity in Dementia (R21 Clinical Trial Optional)
- RFA-AG-20-017: Lucidity in Dementia (R21/R33 Clinical Trial Optional)
Research Programs and Resources
- Improving Surrogate/Clinician Communication: Validation of the Family Impatient Communication
- Enhancing Independence in Elders with Serious Illness
- Transforming Residential Palliative Care for Persons with Dementia through Behavioral Economics and Data Science
- The Hospice Advanced Dementia Symptom Management and Quality of Life Trial (HAS-QOL)
- Improving Quality of Care and Quality of Life for Persons with Alzheimer’s Disease and Related Dementias at the End of Life (R01/R03 Clinical Trial Optional)
- Edward R. Roybal Centers for Translational Research in the Behavioral and Social Sciences of Aging
- Examples of funded projects
- Projects funded under NOT-AG-20-041 in FY2022