It took four doctor's appointments for my wife Kim to stop being misdiagnosed with perimenopause. I remember sitting in the exam room with her during that fourth appointment, the bad feeling in my gut getting worse as I listened to the same explanation Kim had heard three times before.
“Can she get a memory test?” I respectfully asked, refusing to stop until the answer was yes.
Kim had just turned 50 when she was finally diagnosed with Alzheimer’sin 2017. She was a young mother. She had a good career, a happy household and a full social calendar. It felt like she – we – had it all.
The pain of a missed diagnosis
It was obvious to Kim that bits of her were starting to slip. And yet the medical system looked at her – a Black woman struggling with her memory – and told her she
was hormonal. Four times. That isn’t bad luck. It’s a pattern.
According to the Alzheimer’s Association, Black Americans are twice as likely to develop Alzheimer’s as white Americans, yet we are significantly underrepresented in clinical trials and research. We are less likely to get an early diagnosis, less likely to be enrolled in the studies that shape treatment and less likely to receive the kind of care that comes from being seen and taken seriously.
The actual disparity is probably even higher than the numbers show because so many cases in the Black community go undiagnosed entirely due to the widespread social stigma and longstanding distrust of the medical system.
Looking back, Kim’s signs were thereas early as 2015. She began struggling to track details at work. There were minor car accidents. At home, small things changed – she started asking for help with baking, something she had always loved to do on her own.
We didn’t know what we were looking at, as she didn’t fit the “typical” profile. When you think of Alzheimer’s, you most likely picture someone white, in their 80s, not a Black woman in the middle of her life.
An early diagnosis opens doors
There was also a family history we hadn’t fully pieced together. Early-onset Alzheimer's, defined as diagnosis before age 65, accounts for roughly 5-10% of all Alzheimer's cases, and family history is one of the strongest risk factors.
Kim’s grandparents, living in rural Kentucky with limited access to healthcare, had almost certainly experienced cognitive decline. In their time, they were labeled “crazy” and never formally diagnosed. Both of her parents were also eventually diagnosed with different forms of dementia after Kim got her diagnosis and have since passed.
Had we known more, we could have acted sooner. Earlier diagnosis opens a window for things like dietary changes, cognitive exercise, physical activity, medication that can slow progressionand simply more time to make decisions together as a family. We lost years we didn’t have to, which is why Kim and I decided to speak up and to advocate.
Right now, we are urging Congress to pass the Alzheimer's Screening and Prevention (ASAP) Act– bipartisan legislation that would fund Medicare to cover a simple Alzheimer’s blood test that could have given Kim and me answers sooner. Preventative care shouldn’t be a privilege reserved just for those who can afford it; it should be the standard we build our healthcare system around.
'We must learn our family medical history'
But policy change alone isn’t enough. We must learn our family medical history and talk to our loved ones about how to confront the risks we have. Be your own advocate with doctors. Don’t accept an answer that doesn’t sit right or match your reality. Go back. Bring someone with you. Ask for a test.
It changed our lives and took less than thirty seconds.
True, you may not learn what you want to hear. But trust me, it’s better to have that knowledge and turn it into action than to pray for it to go away. Our faith has held our family together. But faith and action are not opposites. We have to do our part. The more you know, and the sooner you know it, the more life you have left to live well.
There are nights that are very hard. There are mornings when I watch my wife and I think about the woman she was before. But then faith sustains me; Kim’s diagnosis grounds me. I remember: She is still here. And so am I. And that is more than enough.
Robert Reid is a member of the AlzInColorCommunity Advisory Board, a support group facilitator for Black Dementia Minds and a Deacon at Restoration Christian Fellowship Church in Georgia. After a 40-year career in transportation, Robert retired and became a full-time care partner to his wife, who is living with Alzheimer’s.
This article originally appeared on Nashville Tennessean: Doctors said my wife's Alzheimer's was perimenopause | Opinion
