Choose your own path through this interactive feature on familial Alzheimer's.
This article is part of the series Diversity & Dementia, produced by Being Patient with support provided by Eisai.
An Alzheimer’s diagnosis is often talked about as a diagnosis of the entire family, because of the extraordinary impact it has not just on the person with the disease, but on each and every family member. I remember when my mom was diagnosed, the most difficult transition was accepting the changing role she played within our own family. For me, it was taking on the role as my mom’s carer and losing the person I would often go to for advice.
Although family dynamics can be complex, a moment like this can also be an inspiring opportunity to strengthen family bonds.
Visual storyteller and creative producer Diana Jou joined Being Patient and spent time with two families affected by Alzheimer’s, in order to more deeply understand the varying perspectives — and resonating impacts — around this one, influential disease. Both of these subjects are people of color, from American Black and Latino communities. While Alzheimer’s disease doesn’t discriminate, it does have an outsized impact on communities of color.
Our family tree project speaks to many members from multiple generations, giving you different perspectives about how Alzheimer’s impacts the entire family.
The Reids, an African American family from Georgia, is proving that support comes in all different ways. After interviewing Kim Reid in 2021, we returned to speak to her family’s evolving roles as caregivers to a wife, mom and a sibling.
The second family we feature in our family tree project is the Castros, a Latino American family, who lives with a heavy presence of the PSEN1 gene, which is a genetic mutation for early onset Alzheimer’s. Michele Castro knows that she is a carrier of this gene but at age 55, has so far shown no symptoms of dementia. With a strong genetic link, her entire family lives in the shadow of Alzheimer’s knowing that they too are at risk.
With this project, we hope that through two family stories, you will see that it truly takes a village when caring for a person or preparing for a future with Alzheimer’s. And the better that support system is, the easier Alzheimer’s is to manage. –Deborah Kan, Being Patient Founder & EIC
