More Than Awareness: Aisha Adkins on Dementia, Equity, and the Families We Continue to Leave Behind

Interview and Blog By Mare Ruland, Simon Health

When Aisha Adkins' mother began experiencing dramatic personality changes, compulsive behaviors, and delusions, her family knew something was wrong.

What they didn't know was how long it would take for someone to believe them.

Like many families navigating the early stages of dementia, they were told it was probably nothing. One neurologist even laughed when they suggested something neurological might be happening, dismissing her symptoms as menopause-related depression. After multiple appointments and an initial misdiagnosis of Alzheimer's disease, Aisha finally found a physician who recognized what her family had suspected all along: her mother was living with frontotemporal dementia (FTD).

The diagnosis answered one question, but it opened dozens more.

"We left with almost nothing," Aisha recalled. "We were told it was terminal, that she couldn't be left alone, and then we were sent home."

There was no roadmap. No navigation. No community.

Only a family trying to survive.

When Dementia Changes Everything

After her mother's diagnosis, Aisha left her job so her father could continue working and keep the family's health insurance.

It wasn't a choice made out of convenience—it was survival.

Her father needed to maintain employment so her mother could access medical care. Aisha became her mother's full-time care partner, believing it might only last a few months.

Instead, it changed the trajectory of her entire life.

Years away from the workforce created employment gaps that employers questioned. Interviews often focused less on her skills and more on whether she could balance work with caring for her mother.

Eventually, she found work that allowed her to continue caring while rebuilding her career. Today, she works in care policy while also caring for her father, who is now living with dementia himself.

Her experience is one shared by millions of care partners—but for many Black families, the challenges are compounded by barriers that begin long before a diagnosis.

Dementia Doesn't Affect Everyone Equally

Aisha believes one of the biggest barriers facing Black communities is not willingness to seek help—but access to accurate information.

"There has been decades of misinformation," she explained.

Many families have never received basic education about dementia. Symptoms may be misunderstood as normal aging, stress, depression, or mental illness. Conversations often happen only after a crisis rather than during the earliest stages, when support could make the biggest difference.

She also points to something healthcare systems don't always acknowledge: historical mistrust.

For generations, Black communities have experienced discrimination and exploitation within healthcare. That history doesn't disappear when someone develops memory loss.

Trust has to be earned.

The Weight of Stigma

Another challenge is stigma.

Although dementia is a neurological disease, behavioral changes can resemble symptoms of psychiatric illness, creating additional fear and misunderstanding.

Aisha remembers family members asking when her mother would "get better."

Explaining that dementia is terminal wasn't just heartbreaking—it highlighted how little understanding existed about the disease.

Language matters.

When people describe someone as "losing their mind" or reduce dementia to a punchline, it reinforces fear instead of understanding.

"We have to humanize people living with dementia," Aisha said. "They're patients. They're people. They're deserving of care and dignity."

Faith and Medicine Can Coexist

One topic that often goes unspoken is the relationship between faith and healthcare.

In some communities, families may feel pressure to rely solely on prayer rather than medical support, creating an unnecessary divide between faith and treatment.

Aisha doesn't believe those things have to compete.

People can deeply trust their faith while also seeking medical care, education, and support.

The goal isn't replacing one with the other.

It's allowing both to exist together.

Health Literacy Is Healthcare

Receiving a diagnosis is only the beginning.

Families are often handed pamphlets filled with medical terminology and expected to navigate an impossibly complicated healthcare system while managing overwhelming emotions.

For people with limited health literacy—or simply those under enormous stress—that information can feel inaccessible.

"It's not about dumbing things down," Aisha explained. "It's about making information accessible."

Education should meet people where they are.

Resources should reflect different cultures, reading levels, family structures, and lived experiences.

Healthcare cannot be equitable if people cannot understand the information they're being given.

Care Partners Need Care Too

One of the strongest themes throughout our conversation was something often overlooked:

The health of the care partner.

Many dementia care partners experience chronic stress, interrupted sleep, financial hardship, grief, anxiety, and depression while simultaneously navigating complex medical systems.

Aisha knows this reality personally.

She spoke openly about searching for affordable therapy, struggling with insurance limitations, and wishing there were more financial supports for people who leave careers to care for loved ones.

She also emphasized the importance of community.

Not simply having people around—but finding others who understand what it's like to care for a parent with dementia.

People who don't require an explanation before they understand.

People who simply get it.

Community isn't a luxury.

For many care partners, it's survival.

Building More Equitable Dementia Care

When asked what she would change about dementia care...

She started with dignity.

She wants to see:

• Better education about dementia within underserved communities.

• More culturally responsive healthcare.

• Greater attention to health literacy.

• Increased financial and mental health support for care partners.

• Stronger community connections.

• Healthcare professionals who understand the disparities families face before they ever walk into a clinic.

Most importantly, she wants to eliminate stigma.

Because stigma delays diagnosis.

Stigma keeps families isolated.

And stigma prevents people from accessing the support they deserve.

What Living Well With Dementia Really Means

At the end of every interview, we ask the same question:

What does living well with dementia mean to you?

For Aisha, the answer wasn't about having perfect circumstances.

It was about having access to what every family deserves.

Living in a nurturing, stigma-free environment.

Receiving trauma-informed and culturally competent care.

Having community.

Having resources.

Having support.

And preserving love—not allowing the endless logistics of caregiving to overshadow the relationship itself.

"When you're constantly managing and fixing and coordinating everything," she reflected, "it's not that the love disappears. It just gets pushed to the back burner."

Her hope is that one day, families won't have to choose between surviving and loving.

That equitable dementia care will mean more than equal access.

It will mean every family—regardless of race, income, education, or zip code—has the opportunity to live well together.

Because that's where real dementia care begins.

Aisha Adkins, MPA, CNP is an Atlanta-based family caregiver, founder, writer, thought leader, speaker, and organizer who is passionate about building an equitable, inclusive, and comprehensive public health and care infrastructure using media, storytelling, and culture and policy change. Her versatility has enabled her to publish works both in academic journals and popular publications. She is committed to making an impact across the country for unpaid caregivers of color through her new venture, 501(c)(3) Caregivers of Color Collective. To learn more about Aisha, visit her website at AishaAdkins.com.