Black/African American Caregivers of Older Adults Living with Dementia: Podcast with Fayron Epps and Karen Moss

The proportion of people living with dementia who identify as Black/African Americans is on the rise, and so too are the proportion of caregivers who identify as Black/African American.  As our guests talk about today, caregiving for people living with dementia takes a tremendous toll, and when this toll is set atop the challenges of racism in all its forms, the reality of caregiving while Black can be overwhelming.

Today we talk with Fayron Epps and Karen Moss, two nurse researchers who are focused on improving the experience of Black/African American caregivers of persons living with dementia.  We talk in particular about:

Terminology.  Acknowledging that the most sensitive terms shift over time, what terms are they using today and why? Black? African American? Black/African American?  We also learn that the term stakeholder, so common in research, should be avoided for its early usage as White colonialists staked out land taken from Native American peoples. 

Why a focus on Black/African American caregivers and people with dementia? Why should interventions be culturally tailored for this group? 

Feyron has centered her work in Black/African American faith communities and churches - a program she titled Alter.  Why this focus?

Karen has a Cambia Sojourns award to pilot an intervention in which Black/African American former caregivers are trained to provide peer support to current caregivers (Peer2Care).  This seems like a triple win - the bereaved former caregiver has the opportunity to be generative, share their story, and give back; the current caregiver connects with someone similar who listens when so many people are tuning them out; the person with dementia benefits from the caregiver’s improved sense of self-efficacy, decreased loneliness/social isolation, and better coping overall.

Why are nurse researchers in particular critical to the study of these issues?

And Karen brings a tambourine in the studio for I’ll Fly Away (see YouTube version)!

-@AlexSmithMD