Dementia advocate and thought leader Aisha Adkins wrote recently on the disproportionate burden that Black women face when caring for family members with FTD and other conditions.  

In the August 30 article, published by the American Society on Aging, Adkins writes that, initially, her mother provided care for both her and her father, both of whom have their own health issues. When Adkins’ mother was diagnosed with FTD, Adkins left her job to become a full-time care partner.  

Adkins writes that the challenge of FTD caregiving quickly began to take a toll on her own health. She found herself stress-eating unhealthy food and exercising less.  

“While I lost 80 pounds in three years, health issues stemming from my premature birth continued to disrupt my caregiving responsibilities,” says Adkins. “Unable to afford health insurance without an income, I have since developed additional health conditions due to caregiver stress, which for years have compounded existing unmonitored conditions.” 

Adkins, like others managing a loved one’s FTD, faced stiff financial costs. A 2017 study funded by AFTD found that the average annual costs associated with FTD totaled $119,654, with an average decline in household income of 50% just 12 months after a diagnosis.   

The costs of caregiving, especially the steep costs that Adkins and others face caring for loved ones with FTD, often align with socio-economic detriments that face the Black community. 

“The ubiquitousness of care in the Black community gives me pause,” Adkins said. “While some view caregiving as an act of reverence for one’s elders, the responsibilities of caregiving often lead to an inability to create generational wealth. With the savings of older adults drained by healthcare costs and many younger caregivers unable to save due to lost wages, paying out of pocket for care expenses, and healthcare for themselves, the cycle of caregiving might very well contribute to generational poverty.” 

As Adkins points out, she is only one of tens of millions of care partners across the United States, many of whom lack adequate support infrastructure. “Home- and community-based services are neither affordable, accessible, nor equitable, particularly for people of color,” Adkins says.  

The solution, Adkins suggests, is to “[Increase] access to services like in-home care, respite, adult day centers, home modifications and transportation, and mandating policies for paid leave and childcare, would allow more women of color to continue earning a living, while also ensuring their loved ones are well cared for and safe in their homes.” 

Adkins appeared at AFTD’s 2022 Education Conference as a member of The Diverse FTD Care Partner Experience Panel. Adkins was also a speaker at the Patient-Focused Drug Development meeting that AFTD hosted in 2021.  

AFTD offers Comstock Grants to help ease financial difficulties faced by care partners and people diagnosed with FTD. There are a number of state and federal programs, as well as private-sector offerings, that can help offset healthcare costs as well.