Voices that Matter
The Virtual Symposium “Listening to the Voices of Stakeholders in Dementia Care Research” featured a series of expert speakers who addressed important topics related to engaging persons living with dementia, family care partners, and other stakeholders in research about dementia care.
Rachel Andricosky, a program officer for the Patient-Centered Outcomes Research Institute, provided an introduction to research that engages families living with dementia in research. Rev. Dr. Cynthia Huling Hummel is an author, advocate, and artist living with dementia who shared her perspective on stigma and living well with dementia. Jan Dougherty, MS, RN, FAAN, is a dementia Care Consultant/President of an organization called TravALZ to support families living with dementia to travel safely. Her presentation focused on Living Well with Dementia and highlighted strategies to enhance life for people living with dementia, methods to engage care partners, and how to recognize “I” statements that move toward wellness. Lastly, members of a Stakeholder Advisory Council of a PCORI-funded project to identify research topics that are important to diverse stakeholders in dementia care research presented as a panel on their project. Panel members included Ginny Funk of the Alzheimer’s Association, Dr. Angelica Davila of the Biggs Institute, Michael and Kiki Foster who are a family living with dementia, and James “JEB” Butler, a chaplain for Heart of Texas Hospice who each shared their reasons for engaging as collaborators in research and what research topics identified through their work on the council have resonated most with them.
You can view each presentation by clicking HERE