New Publication and Podcast Bring Attention to Living Well with Dementia for those in the Black Community
According to the African American Network Against Alzheimer’s, older Black Americans are about twice as likely as older White Americans to develop dementia and hold about one third of total societal costs for dementia. That is a huge burden to bear socially, emotionally, and economically. To address this, the Global Council on Alzheimer’s Disease and the Dementia Action Alliance joined forces to develop “Calling All Voices: Stories from Black Community Members on Learning to Live Well with Dementia” to feature extensive interviews with those living with dementia and their care partners within the Black community.
The publication and podcast share perspectives from a variety of experiences, backgrounds, locations, and types of dementia including lessons learned, challenges, and biases experienced within the healthcare system, stigmas described within their own culture, and difficulties finding culturally appropriate support and resources.
Debra Tann, Ed.D., a dementia care partner, expertly leads these conversations and interviews with skill and genuine compassion. Her husband Chris, who is living with Frontotemporal dementia, is among the many interviewees sharing their perspectives.
“Calling All Voices” also shares inspiring stories of hope and resilience. It touches on advocacy efforts, community building, and calls to action both within and in support of the Black community.
The publication further reports on disparities in the healthcare system, stigmatization, and misunderstanding that adversely affect diagnosis rates, access, and quality care in the Black community. Despite progress made to support inclusivity in dementia care and treatment, there is, of course, still work, and continued conversations necessary to close the wide gap.
Calls to action include:
- Supporting the work of advocates to explore and address systemic racism within healthcare systems – including areas of improvements to inclusion, advocacy, and accessibility for the Black community.
- Supporting efforts to encourage and destigmatize conversations around dementia in the Black community – including organizations intentionally making culturally-capable efforts to provide education and resources, encouraging more open conversations about dementia and its impact on individuals and their families, and emphasizing inclusion on informational materials on dementia.
- Improving resources available from initial symptoms, management of diagnosis, ideas regarding living well, and available support for both healthcare providers and the community.
For more information on Lewy body dementia and the support services provided by the LBDA, see our informational flyer.