Have you ever walked into a room and couldn’t remember why you went in there? What about misplacing your car keys? We’ve all been there. So, how can we tell what’s normal aging and what’s something more? Well, Juli Chenault has had a few of these moments too.
She first noticed something was wrong when while on her way to a sales call for work, on a route she’d taken many times before, Juli needed to pull her car over on the side of the road—she didn’t know where she was or how to get where she was going. She wasn’t sure if it was normal aging, stress, or something more—but she was determined to find out.
Juli’s determination was born from witnessing her mother’s diagnosis and struggle with Alzheimer’s disease. Juli noticed right away when her mother began struggling with her memory and thinking—normal tasks were suddenly out of reach. “My sister and I saw the signs and were very present while caring for our mother,” Juli says. “My brother had a harder time seeing her like that, he wouldn’t go and visit her, so we took on the caregiver roles for our family.” She went on to say that her mother had the sweetest nature about her. “She was our queen,” she says.
A mother, sister, daughter, and very proud grandmother, Juli calls rural Kentucky home. An active member of her church community and avid reader who loves to crochet, she and her husband recently went through a big move to a new house that’s close to her loved ones. Juli has always made it a point to be surrounded by family—they raise each other up in good times and in bad, starting at a young age.
What is Mild Cognitive Impairment and How Does It Relate To Alzheimer’s Disease?
But before we get too far into Juli’s story, let’s define these diagnoses. Mild Cognitive Impairment (MCI) is the earlier stage between the expected decline in memory and thinking that happens with age, and dementia.[1] MCI may include problems with memory, language or judgment.[1] These changes are serious enough to be noticed by the person affected, and by family members and friends, but not serious enough to interfere with the individual’s ability to carry out everyday activities.[1] Dementia is not a specific disease, it’s an overall term that describes a group of symptoms, which can accumulate to interfere with someone’s daily life.[1]
Alzheimer’s disease, which is one type of dementia, affects approximately 6.9 million people in the United States[1] and causes people to experience cognitive decline, such as memory loss and difficulty thinking and understanding. In the U.S., Black people are disproportionately more likely to have dementia[2] and nearly two-thirds of Americans with Alzheimer’s disease are women.[1] The number of people living with Alzheimer’s disease could grow to 13.8 million by 2060.[1]
It is more prevalent in our communities than you might think. Among Black Americans aged 70 and older, 18.6% are living with Alzheimer’s disease, and 55% of Black Americans think that significant loss of cognitive abilities or memory is a natural part of aging.[3]
The Diagnosis Journey
A timely and accurate diagnosis is only possible if the person is aware their memory and thinking issues are not a normal sign of aging. Fortunately, Juli’s experience with her mom prepared her to take the first steps with her primary care physician. Acting early can be critical in getting proper care. Luckily for Juli, her healthcare provider was supportive, listened to her, and helped refer her to neurologists who could conduct additional testing to get a diagnosis.
But that’s not always the case. According to the Alzheimer’s Association survey of U.S. adults, Black Americans are more likely to experience a misdiagnosis or remain undiagnosed than older White Americans—with 36% seeing discrimination as a barrier to receiving proper care.[4] And, more than half of people living with a form of dementia such as MCI have never been formally diagnosed.
Juli knew she needed to seek out additional testing because with memory and thinking issues, time is of the essence and may ultimately affect available treatment options. She traveled to nearby Louisville, Kentucky, where neurologists used both cognitive assessments and biomarker diagnostic tools to identify an appropriate course of treatment. During her testing, Juli was given a few keywords to remember, then during a conversation, she would be asked to repeat those words. “It was like my mind was blank, I couldn’t recall the words,” says Juli. “It was embarrassing.” While the tests were a little scary, she continued to advocate for herself to ensure she got the diagnosis and help she needed.
According to Juli, “There are a lot of misconceptions about dementia.” She wasn’t exactly eager to share her diagnosis until she learned the pastor at her church would be attending a webinar on the subject. “When I told my pastor that I had dementia, he was surprised,” Juli says. “People see someone acting normally and don’t associate it with Alzheimer’s.” That’s why it’s so important to be proactive and communicate any changes to your doctor—you cannot own your future health if you don’t acknowledge what’s happening early on. “You have to talk to your family, talk to your doctor,” she says. “You cannot hide from it—and you cannot get help if you don’t talk about it.”
Juli went on to say that talking about her experience can be healing in itself. “You must have a village of people to help and support you. I am so thankful I have my husband, my daughter, and my sister,” she says. “It makes me sad when I meet people who haven’t told their family of their diagnosis or when family members do know and are not present or supportive.”
Time Brings Hope
Even with co-morbidities including diabetes and high blood pressure, which can be disproportionately common in our communities, Juli stressed the importance of taking care of your body and mind. She went on to say that brain health is just as important as overall health, “so engage your mind, get engaged in conversations, and share what is happening with your health with others.”
Recent medicines have been shown to have potential benefits when people are treated in the early stages of the disease. “If my mother had access to the testing that I had, we would have been able to be proactive,” she says. “Early intervention could have made a difference.” Typically, those who have received a diagnosis often wait more than two years after symptom onset. Even modestly slowing the progression of early symptomatic Alzheimer’s disease may allow for more time to plan and prepare for the future, and for people living with Alzheimer’s disease to continue doing the activities that matter the most to them, for longer.
And living is just what Juli is out in the world doing. She isn’t missing a moment with her family. When we spoke with her, she was excitedly waiting for her granddaughter to come home from her first day of school. Because of early detection, Juli had time to create the care plan she wanted because, after all, time brings hope.
If you’re noticing memory and thinking issues piling up, go to More Than Normal Aging to learn more about what you can do. You can also check it on Facebook and Instagram.
References
[1] Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Accessed May 2024. https://alzjournals.onlinelibrary.wiley.com/doi/10.1002/alz.13809
[2] Tsoy E, Kiekhofer R.E., Guterman E.L., et al., “Assessment of Racial/Ethnic Disparities in Timeliness and Comprehensiveness of Dementia Diagnosis in California.” JAMA Neurol. (March 29, 2021). https://doi.org/10.1001/jamaneurol.2021.0399.
[3]Alzheimer’s Association. “Race, Ethnicity and Alzheimer’s in America.” (2021). alzheimers-facts-and-figures-special-report-2021.pdf
[4] Alzheimer’s Association. “Special Report: Mapping a Better Future for Dementia Care Navigation.” (2024). https://www.alz.org/media/Documents/alzheimers-facts-and-figures-special-report.pdf
Juli Chenault was compensated for her time and for sharing her story with Essence.
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