Stakeholder Alliance for Better Palliative Care for People with Dementia and their Caregivers

Background: Addressing dementia and its consequences for the patient, the family, and society is one of today’s greatest public health challenges. How best to work with families confronted with a diagnosis of dementia to support quality of life and plan future care has not been well studied. The importance of a palliative care approach for those with dementia is increasingly recognized, yet care is fragmented and palliative care needs of people with dementia and their caregivers are often poorly addressed.

Proposed Solution: Build a sustainable alliance of key stakeholders who are engaged in the development, execution, and dissemination of patient-centered outcomes research (PCOR) for better palliative care for persons living with dementia and their families.

Objectives: The objectives to reach the project’s ultimate goal of PCOR that is relevant and important to people with dementia, their family caregivers, healthcare providers, and policy makers are to: build an alliance of patient, family caregiver, community, clinician, research, and local and national organizational partners; build capacity for active participation in PCOR among this diverse group of stakeholders; develop a toolkit to provide guidance for engaging persons with dementia and their family caregivers as collaborators in dementia care research; and identify priorities for a PCOR agenda for dementia-specific palliative care.

Activities: The project team will establish a stakeholder advisory council (SAC) that will plan and implement webinars in years 1 and 2 that focus on PCOR methodology and that review existing evidence about palliative care in dementia. A symposium in year 1 will bring stakeholders together to discuss PCOR methodology and the toolkit for engaging persons with dementia and their families in PCOR. A symposium in year 2 will be focused on identifying priorities for a PCOR agenda for dementia-specific palliative care. A web portal will be used to support communication for building the partnership and collaborating with stakeholders to prioritize PCOR questions identified in the symposiums.

Outcomes: An expected long-term outcome is that stakeholders actively participate in PCOR that optimizes palliative care for people living with dementia and their families throughout the disease trajectory. Measureable short-term outcomes are: increased capacity of researchers and clinicians to engage diverse stakeholders in PCOR; stakeholder partnership that is confident to engage in PCOR about palliative care in dementia; and commitment from national organizations to promote PCOR in this area. Outputs are a toolkit for partnership engagement in PCOR in dementia, a white paper based on the two symposiums, and a prioritized agenda for PCOR in dementia-focused palliative care.

Stakeholder Engagement: Representatives from key stakeholder groups who will participate in the SAC are: people with early-stage dementia, family caregivers, community agencies, clinicians, researchers, Alzheimer’s Association, Hospice and Palliative Nurses Association, and policy makers. The larger group of stakeholders will be engaged through the annual symposiums, webinars, and the website for exchange of information and ongoing communication.

Project Collaborators: UT Health collaborators include the Caring for the Caregiver Program, Geriatrics and Palliative Care, and the Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases, as well as the Alzheimer’s Association.