Despite the demand for and recent proliferation of efforts to meaningfully engage patients and their caregivers in research partnerships, the voices of people living with dementia (PLWD) as co-researchers and participants have been noticeably absent. Presumptions of incapacity, stigma, and a lack of innovative methods to facilitate participation have contributed to the silence. Given that nearly 36 million families are impacted by dementia worldwide (Prince, et al., 2013)—a number that is expected to rise to about 115 million by 2050—this project will work to overcome the challenges impeding PLWD from having a say in the very research that could make a difference in their lives.
Founded in 1990, LiveWell, based in Southington, Connecticut, is a dementia services provider and national pioneer committed to positively transforming the way PLWD are viewed, engaged, and supported. LiveWell is working with HoodenPyleGil (HPG) to engage a network of PLWD, family care partners (CP), researchers, and local/national stakeholders to collectively build their capacities to partner in all aspects of person-centered outcomes and clinical effectiveness research. The project will incorporate the work of PCORI-funded awardees and their respective evidence-based methods developed by the Yale Program for Recovery 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.
LiveWell’s commitment to champion issues of importance for PLWD and their families includes support to co-create with PLWD the Dementia Peer Coalition (DPC). The DPC, led by and for those living with dementia, seeks to develop a peer-to-peer network focused on: peer support, advocacy, research, education, and volunteerism. This project will catalyze the DPC’s expansion—across the North Central and Southern regions in Connecticut—ensuring that a sustainable network of PLWD are prepared to engage as participants in research studies, are key partners in all aspects of the research process, and are working together as peers helping to raise the voices of other individuals living with dementia.
Over the two-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
Research has shown that involvement in meaningful activities, giving back and helping others, and maintaining valued roles can help to ameliorate the experience of loss of “self” that often accompanies the diagnosis. Including persons with dementia in research will not only enhance knowledge about dementia but will give back value to persons with dementia.