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Keeping the Faith with African American Families Living with Dementia

October 11, 2022
By Katherine Carroll Britt, PhD, MSN, RN

Although statistics indicate that communities of color are disproportionately affected by Alzheimer’s Disease and related dementias, nursing scholar Fayron Epps, PhD, RN, FAAN, had not heard much about it in her nursing practice, in her community, or even in her own family. When she asked, she heard, “That’s for white people. We don’t get that.” So began Dr. Epps’ journey to understand the experiences of African American families dealing with dementia and design programs to meet their needs.

Dr. Epps joined Mary D. Naylor, PhD, RN, FAAN on Penn Nursing’s Caregiving NOW Initiative to talk about her research with dementia caregivers and the importance of engaging the community she studies and serves. Dr. Epps shared her journey of inspiring and equipping faith-based organizations in African American communities to better support families affected by dementia. In this engaging webinar sponsored by the NewCourtland Center, Dr. Epps described how she built relationships over time and met caregivers where they are.

My partnership with faith leaders is really key, especially if I’m implementing things within their community. I need to hear from them … that is how we form this relationship. It also allowed me to understand what they need and how they operate in order for me to bring this program to them and for it to be successful.

In her postdoctoral research, Dr. Epps used in-depth interviews of 18 African American families to listen to their experience of living with dementia. The work identified a significant need for dementia awareness in the African American community among caregivers and persons living with dementia, including a need for more resources and education. From this foundation, she decided to address these needs by partnering with faith-based communities to deliver educational resources and additional support to improve the lives of African American caregivers and their loved ones. What really matters, she said, is listening to their needs and then returning with a solution. Dr. Epps has created the Alter Program to equip faith-based communities to better serve their parishioners with cognitive impairment. Currently partnering with faith communities in seven states (Arkansas, Florida, Georgia, Illinois, Kentucky, North Carolina, and Minnesota), her educational program is expanding to Tennessee and Pennsylvania.

Education, support, and worship – those are the three pillars for the Alter program itself.

Dr. Epps has also developed and is now testing an online, culturally-appropriate caregiver education and training program, Caregiving While Black. Funded by the RRF Foundation for Aging, this six-week program addresses the cultural reality of caring for someone living with dementia and is designed to give African American caregivers the tools they need to navigate care for family members or friends with dementia. 

 

Dr. Epps’ experiences show us the importance of rethinking common research and community engagement practices in order to advance health equity. Partnering with members of communities that have been historically underrepresented is essential to address systemic inequities and to improve the lives of caregivers and families. A key component of Dr. Epps’ work is her community advisory board and design team, who are full partners in defining the research questions, interpreting the findings, and delivering programs that address the identified needs.

According to Dr. Epps, addressing the needs of caregivers and persons with dementia starts with listening to them. Their questions and needs should drive interventions and solutions to promote their health and well-being. A program that is not fully informed by the people it serves will never reach its potential. Start with listening and circle back with a solution. The conversation needs to go both ways.

Dr. Epps’ passion for her work is evident. As a nurse and researcher, she is on a journey with the communities she serves, and her personal and professional commitment is inspiring.

It is not just one person; it takes a village for us to support these families and to make sure they have a good quality of life on their journey.

Join us for the next exciting conversation in our webinar series on October 19, 2022, with Jisella Dolan, JD, Chief Global Advocacy Officer from Home Instead, the largest home health care provider across the globe. She will share her work advocating for older adults, caregivers, and their families, and how that dovetails with her work on the advisory council that developed the new 2022 National Strategy to Support Family Caregivers. Register today!