The Reid family never expected an Alzheimer’s diagnosis, but today, they’re doing all they can to make a difference.
This article is part of the series Diversity & Dementia, produced by Being Patient with support provided by Eisai. Image: Robert Reid and his wife Kimberly. Image courtesy of Robert Reid.
In a way, Robert Reid had been preparing for his moment as caregiver to his wife Kimberly for nearly four decades. Childhood sweethearts, the two first connected in their Kentucky middle school, where Robert expressed his interest by asking a friend to pass along a rose to Kimberly. While relocation and other relationships separated the two for a few brief years, they remained in touch and married in 1989.
That long, dedicated relationship means that Robert and Kimberly are in sync, so it was only natural that when Kimberly began exhibiting issues with her memory, Robert immediately became part of her diagnosis journey.
Kimberly was only 50 years old, working as a freight manager for a logistics company in Georgia, when she first noticed that she had started to become forgetful. At such a young age, she didn’t consider that it could be Alzheimer’s. She visited her primary care physician first to discuss the role that menopausal hot flashes and anxiety attacks might be playing.
After failing to come up with answers, Robert felt it was time to step in and advocate for Kimberly.
“We live in the Atlanta metro area where everything is always rush rush,” Robert told Being Patient. “So the medical system is trying to get you in and get you out, not taking the time to listen to the patient.”
Robert’s first step was to switch the family to a Health Maintenance Organization (HMO), where physicians were more connected and able to compare notes. In 2017, after two years of testing and doctor’s visits, Robert and Kimberly officially received her diagnosis of early-onset Alzheimer’s.
It wasn’t long after diagnosis that Robert and Kimberly jumped into action to help others with the disease: “We formed a team for the ‘Walk to End Alzheimer’s’ in Peachtree, Georgia, for the first time in 2017,” Robert said. “We were recognized as a top 15 fundraising team and did it again in 2018.”
In that second year of participation in the walk, Kimberly took to the stage as the face of early-onset Alzheimer’s while someone read her story. By 2019, the Reids’ efforts put them in the top 10 among fundraising teams, and in 2020, they moved into the top five fundraisers at the annual walk.
“We owe our fundraising success to family and friends, but also to my employer and coworkers at Gresham Smith,” Robert said. “The firm’s support has extended into several areas, and ultimately allowed me to share the podium with one of Emory Healthcare’s neurologists, who was able to begin seeing Kimberly as a patient.”
This was in 2018, after Kimberly had completed a clinical trial for a series of drug infusions targeting amyloid plaques in the brain. Unfortunately, she had adverse reactions to the drug and couldn’t complete the trial. The Emory neurologist took on her case from there.
In addition to her young age at diagnosis, one of the reasons Kimberly and Robert didn’t initially consider Alzheimer’s as a possibility is the fact that Kimberly was unaware of some of her family’s medical history. As it turns out, family on both her mother’s and father’s sides likely had dementia.
“Both of Kimberly’s grandmother’s probably had the disease, although neither had an official diagnosis,” Robert said. “Black people had little healthcare options back then — today they would be diagnosed.”
Additionally, Kimberly’s mother passed away from Parkinson’s disease and Lewy Body dementia, and her father is presently living with a dementia diagnosis.
According to Robert, the historical lack of healthcare access in the Black community has repercussions still today: “When people mention Alzheimer’s, a picture pops into your mind, typically of an older white person,” he said. “But when you look at statistics, you learn that more Blacks and Hispanics are affected by the disease than white people.”
While Black Americans are about twice as likely to develop Alzheimer’s and other dementias than their white counterparts, they are only about one third more likely to receive a diagnosis.
“I would tell others to get a good understanding of the disease and your medical history, if you can,” Robert added. “Don’t be afraid to advocate for yourself and speak up.”
Living With the Disease
Today, Kimberly lives at home under Robert’s attentive care, supported by their adult children, who currently live at home to help out. Robert retired at the end of last October to provide more constant care, and the close-knit family works together to support Kimberly’s quality of life.
He said his deep and abiding faith helps the family stay as optimistic as possible in light of a difficult situation, especially now that Kimberly is experiencing sundowning.
“We spend a lot of time walking, just sitting and watching TV, and playing gospel music,” Robert said. The family has also received emotional support from the Dementia Minds and Black Dementia Minds groups, as well as the Georgia Alzheimer’s Association.
Robert will be the first to say that, in spite of everything, he and Kimberly consider themselves fortunate, especially when it comes to the support they have received throughout this process. In part because of this, they will continue to fundraise and advocate for others into the future.
Through the entire Alzheimer’s process, one thing is clear: From a very young age, Robert and Kimberly were destined to walk side by side.
“We are comforted in knowing that God keeps his unchanging hands on us,” Robert said. “He has continued to shower us with grace, mercy and kindness as we travel this journey together.”
Susanna Granieri contributed to reporting