Despite the demand and recent proliferation of efforts to meaningfully engage patients and their care partners in research as partners, the voices of people living with dementia have been noticeably absent. Presumptions of incapacity, stigma, and a lack of innovative methods to facilitate collaboration have contributed to the silence. Given that nearly 36 million families are impacted by dementia worldwide – a number that is expected to rise about 115 million by 2050 – it is time that we learn how to overcome the challenges and stigma impeding individuals living with dementia from having a say in the very research which could make a difference in their lives.
In 2017, the U.S. Department of Health and Human Services sponsored the first National Research Summit on Dementia Care which brought together persons living with dementia (PLWD), care partners (CP), researchers, and other key stakeholders to identify knowledge and gaps to improve quality of care and the “lived experience of persons with dementia and their caregivers.” Summit proceedings and reports identified gaps related to the roles that PLWD and their CP play in the research enterprise. Barriers to inclusion of PLWD and CP include: (a) stigma; (b) lack of clarity related to capacity of PLWD; and (c) ineffective methods that describe how to engage and guide research dyads through the research process.
Over the 2-year funding period the multi-stakeholder project team will:
- Expand the reach and diversity of the DPC membership
- Build a sustainable PCOR/CER community network of multi-stakeholder partnerships
- Develop a training program for PLWD, CP, and researchers to partner in research, including a guide to assess capacity to participate
- Implement the training program with a small number of diverse—including minority—participants, and refine the program based on lessons learned
- Identify, prioritize, and disseminate research topics important to PLWD
- Compile lessons learned on how to guide PLWD, CP, and researchers interested in partnering as co-researchers in a Program Implementation Toolkit designed to increase project uptake and address critical knowledge gaps
- The project will incorporate the work of PCORI-funded awardees and their respective evidence-based methods developed by Yale Program for Recover and Community Health, University of Connecticut Center on Aging, and the Alliance for Aging Research. Project partners will also collaborate on strategies to increase access to the PCORnet-funded National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network.