I’ve never met Wendy Williams. But learning she has aphasia and frontotemporal dementia triggered a familiar sense of grief and sympathy. My grandmother had dementia, more specifically, Alzheimer’s, and passed from the condition in 2015. It’s hard to explain the hurt of witnessing a loved one lose the qualities that make them who they are and gradually become someone you don’t recognize.
But Williams’s news offered a more universal lesson too: dementia doesn’t discriminate based on class, income, or celebrity status. However, there are significant racial disparities in diagnosis and treatment.
Racial Disparities in Diagnosis and Treatment
The Alzheimer’s Association notes frontotemporal dementia causes nerve cell damage that changes one’s behavior, personality, and grasp of language, and is less common than Alzheimer’s. Carl V. Hill, M.D., chief diversity, equity and inclusion officer of the Alzheimer’s Association, says Black and other underserved communities are disproportionately impacted by Alzheimer’s and dementia, and yet are less likely to be diagnosed, recruited to participate in research, and to have access to care and support services.
He notes Black Americans are roughly two times more likely to develop these two conditions that bring loss of cognitive functioning that impair thinking, remembering, learning, reasoning, and more. Still, the risks and the toll of dementia on Black communities are vastly under addressed compared to its impact.
“There are many factors contributing to these health disparities experienced by families in disproportionately affected communities,” Hill says, noting that systemic inequities — including lack of wealth, poor early life education, and low access to food and healthcare — are fundamental reasons for the health disparities experienced by Black and other communities related to Alzheimer’s and other dementias. “In addition, chronic health conditions associated with higher dementia risk, such as cardiovascular disease and diabetes, disproportionately affect Black/African American and Hispanic/Latino populations.”
Identifying the Signs
Sharon D. Allison-Ottey, MD is a physician trained in internal medicine and geriatric medicine, as well as an author, researcher, health advocate, speaker, and health strategist who clarifies that dementia is not a specific disease but is instead a general term for the impaired ability to remember, think, or make decisions that interfere with doing everyday activities.
“There are many other clues that we should be aware of like an inability or difficulty in completing tasks that they’ve done previously, a change in their desire to go to social events or outings, a loved one feeling noticeably anxious, confused, more fearful or a change in mood,” says Allison-Ottey. “Another red flag is issues with judgment concerning finances and other areas.” She offers a few real-life examples of changes that can sound the alarm:
Grandma has been making the best pound cake for over a decade, but her last two attempts have failed (i.e., she left out the sugar, burned the cake, etc…).
Uncle is a sharp dresser, but now he appears unkept or not as sharp, and you notice that it takes him a long time to tie his shoes.
Grandpa never lets anyone borrow money; now he has given large sums to a wayward grandchild, distant relative, friend, or even a stranger.
“We should look for progressive and significant signs of memory impairment that impact daily life,” she says. “That includes misplacing things, problems remembering dates and faces or even a bit more troubling, a difficulty with ‘word finding’ and repeating themselves may all be part of the early to late onset of dementia,” she says.
What to Do
She notes the importance of treating your loved one as an adult and asking others around them if they see the shifts, too.
Don’t assume what’s happening.
The National Institute on Aging notes many circumstances—as simple as medication side effects, sleep issues, low vitamin D, or imbalanced diet or as serious as head injuries, blood clots, tumors, or thyroid issues—can cause similar symptoms. “A physician’s visit will help sort things out. Is this a medication-related short-term issue, normal aging, or is this early or mid-stage dementia?” says Allison-Ottey. “A specialist, such as a geriatrician or neurologist, may be warranted as they can help guide the initial and ongoing treatment. A family meeting and discussion is important at all stages without the loved one and certainly with the loved one.”
Engage more often.
She notes that it’s important to talk to loved ones “in a safe atmosphere” to see how they feel and if they notice shifts in their memory, mood, or daily activities. She also suggests routine phone calls, visiting more frequently, and doing a safety check of the house to make sure they can navigate the space. But don’t treat them like children or remove their autonomy. “I continue to stress that you respect their ‘adulthood’ and do not attempt to control their life or drastically change it as this may cause them to retreat and to become defensive,” she says. “If you think that the loved one is a danger to themselves, it is important to intervene accordingly.”
Support them in seeing a doctor.
Learning more is scary but necessary. “If possible, ask if you can make an appointment with their primary care physician to discuss and offer to go with them,” says Allison-Ottey. “Write down all of the issues and concerns, and you can send them to the office even if they don’t want you to go with them.”
Find community.
Without my loved ones, processing the grief of losing my grandmother would have been impossible. Community is essential in every stage of this process. “I tell diagnosed individuals and family caregivers that no one needs to go through this disease alone. It’s important to reach out for help — to your family, your personal network, and to the Alzheimer’s Association and other services in the community,” says Hill, who shares that the Alzheimer’s Association has offices across the country.
There were many moments—like when playing music or having a conversation—that I’d see her come back to me. Had I known then what I know now, I would have spent even more time with her and taken many more pictures. It’s been well over a decade since we saw those initial signs and symptoms. The journey was painful more often than not, but I have zero regrets about choosing to engage and support my grandmother in those final stages of her life.
