Diversifying and Strengthening Dementia Palliative Care Clinical Trials

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Project Summary/Abstract Alzheimer’s disease (AD) and AD-related dementias (AD/ADRD) are progressive, debilitating, and terminal illnesses1 that cause significant suffering to individuals and families. Dementia is the sixth leading cause of death in the United States; 1 in 3 older adults die with a dementia syndrome. Distressing symptoms -- shortness of breath, pain, neuropsychiatric symptoms, and feeding problems, are common, and worsen over the disease trajectory. Transitions between care settings increase as AD/ADRD progresses, often resulting in poorly coordinated and fragmented care. Family caregivers provide extraordinary emotional and practical support through all stages of illness, resulting in high rates of caregiver strain, depression, physical illness, and loss of employment. Palliative care seeks to improve quality of life and reduce suffering by addressing patient and caregiver distress, managing symptoms, clarifying goals of care and aligning goals with preferences. While in many conditions, palliative care has been associated with a wide array of beneficial outcomes including improved quality of life, increased patient and caregiver satisfaction, and cost saving, these outcomes have not been seen consistently in ADRD. In fact, there is a dearth of evidence to guide clinicians in providing high-quality palliative care in ADRD. The overall objective of this application is to improve the evidence base for dementia palliative care interventions by identifying and upskilling dementia and palliative care investigators in the conduct of rigorous clinical trials focused on improving quality of life for persons living with dementia and their care partners. Using our experience of training researchers in palliative care clinical trials and leveraging our strong network of dementia palliative care investigators, we will seek to a) Identify promising diverse investigators in palliative care, geriatrics and clinical neurosciences and provide the opportunity for further training in the design, funding, conduct, monitoring/oversight, ethical performance, and reporting of ADRD palliative care clinical trials; b) Enhance the pipeline of rigorous, well designed ADRD-PC clinical trials by equipping investigators with a strong foundation in the conduct of ADRD-PC clinical trials based on the NIH Stage Model, including intervention development, community-engaged research and implementation science; c) Promote ongoing professional career development by supporting participants before, during an after a week-long in-person training program; and d) Create a network for collaboration and sharing of educational resources for clinical trialists in dementia palliative care.