For the past fifty years, Robert and Edna Nicholson have stuck by each other’s side.
When they first married, Robert started working in the same post office as Edna so he could make sure she didn’t lift anything heavy while the couple tried to get pregnant. After their two kids were born, they each worked long hours to jointly support the family. When Robert had a quadruple bypass years ago, Edna spent every day possible beside him in the hospital.
Now in their seventies, the couple is planning how to take care of each other during their next, and possibly most challenging, phase of life: Staying connected as Robert’s memory fades from Alzheimer’s disease.
“The most important thing about this change I’m going through is that Edna is beside me and helping me where it seems to be a little tough,” Robert said. “She’s there to guide me.”
Edna wants to make sure Robert has a say, too. That’s why the couple turned to Cleveland’s Benjamin Rose Institute, a nonprofit that works with aging adults. Through a program known as SHARE, counselors help people with early-stage memory loss plan what they want their future care to look like.
Edna likes that it gave her husband “a chance to dictate how he wants the rest of his life to go.”
Historically, the program reached mostly white families, researchers at Benjamin Rose say. But Black adults have far higher rates of Alzheimer’s disease, a type of dementia. So the institute launched a program last year tailored to recruiting African-Americans. Now, the institute is studying how well the new SHARE program is connecting in the African-American community.
Edna and Robert are among only a few dozen who have participated in the new targeted SHARE program, which means researchers have only about 40% of the couples they need. Donna Salaam, the research assistant with Benjamin Rose who is recruiting participants, said a deep-rooted stigma around dementia and a lack of trust in clinical trials makes it difficult to convince African-American families to join.
Edna said the cultural hesitancy to discuss Alzheimer’s is exactly why the SHARE program and those like it are essential.
“It’s a way of showing awareness, showing African-American people like us that, ‘Yes, it [dementia] does happen to us,’” Edna said.
How the SHARE program supports those with Alzheimer’s disease
Decades ago, researchers noted that patients with memory loss and their caregivers had particular views about how they wanted aging to unfold. But they rarely discussed their perspectives with each other. That’s why they created the SHARE program.
The counseling sessions explain the science behind dementia, offer suggestions of safe activities they can both participate in and help them craft an overall care plan. Participants can be couples, parents and children, siblings, neighbors and more.
People who complete the SHARE program are more likely to use community support services, such as counseling, and establish better relationships with caregivers, one 2017 study found. That was exciting to find out, said Silvia Orsulic‑Jeras, an author of the study and a senior research associate at Benjamin Rose. But the people who participated in the study were mainly white.
Orsulic‑Jeras received federal funding to make the new program more responsive to African Americans. They changed language on flyers to focus on memory loss, instead of dementia, and opened it to people without a formal diagnosis — hoping to make it less stigmatizing and more accessible. They added a session where family members can join the conversation about future care plans. And Salaam is recruiting residents from historically Black communities in Cleveland and across the country, visiting health fairs and churches.
But researchers fear that without more African-American participants, it will be difficult to evaluate the program. Benjamin Rose is seeking about 70 more couples.
“Research like this is critical in ensuring that this population gets the care that they deserve,” Orsulic‑Jeras said. “I want to shout that from every possible mountaintop.”
Edna and Robert build a life together
Edna and Robert met in their twenties at the downtown post office in Cleveland, where both worked as clerks. They started off as friends and slowly fell in love.
The couple each had grown children from previous relationships. But they wanted to have more kids together, and they did: a son first, then a daughter. After their kids were born, life sped up. The couple moved to Richmond Heights for its well-regarded school district. Then, their daughter tested off-the-charts in reading, and they began looking at private schools. She received a scholarship to attend a prestigious and pricey private school in an East Side suburb; the Nicholsons sent their son there, too. Private school tuition added up, as did class trips and baseball for their son.
To support their kids’ ambitions, Edna got a second job at a nursing home working as a certified medical assistant, and Robert began working nights so he could be with their children during the day.
They were “just so willing to do whatever it took to make sure that we could achieve our dreams, whatever they were,” Edna and Robert’s daughter, Royale Nicholson, said.
Royale had big ones: At high school, she studied Chinese and later went to a university in China. There, she paid tribute to her parents in a college essay that the school passed on to Michelle Obama, who was visiting China in 2014 to give a speech about cross-cultural relationships and studying abroad. The family made a strong impression on the then-First Lady.
“Like me, Royale is a first-generation college student,” Obama said in the speech. “And her mother worked two full-time jobs while her father worked nights to support their family.”
Working the night shifts to support his family took a toll on Robert. He struggled to sleep and remembers lying next to his wife “stiff as a board” because he didn’t want to disturb her. As the couple began to address his sleep issues several years ago, Edna also noticed Robert struggling to remember small things such as where he put his glasses or his phone. Slowly, his memory lapses became more notable, with him forgetting where he was driving.
Working in a nursing home, Edna saw patients struggling to recognize family members or losing a clear sense of direction. So, she knew what was happening to Robert. Long before the doctors confirmed it, she said she believed her husband was likely losing his memory.
SHARE offers path forward as Nicholson family deals with Alzheimer’s disease
Edna doesn’t remember where she found a flyer about the SHARE program. But she remembers she picked it up because it was advertising to the African-American community specifically, which made her feel more open to participating.
“It’s really important because of the fact that African-American people don’t trust the medical field so much,” Edna said.
“After Tuskegee,” Robert added, referring to a decades-long study in which doctors recruited and then failed to treat hundreds of Black men with syphilis to study the effects of the disease.
The two started the SHARE program in spring. Edna initially thought she was joining a support group. But she found the personal counselor assigned to them to be a great guide.
The two learned vital information they didn’t know before. Shuffling feet and declining food are signs of the disease’s progression. They were told that dancing and music can improve brain health, which Robert and Edna were happy to learn since they love to dance together. The SHARE program also helped connect them with a local senior program for people with Alzheimer’s.
Then, came the most important step: their counselor helped Robert and Edna make a future care plan. Family members gathered on a video call and took responsibility for different tasks, especially if or when Edna is unable to.
Robert’s sisters agreed to drive him and do laundry, while his son would help him in and out of bed and run errands like picking up prescriptions. Robert and Edna’s oldest children from previous relationships also joined the call: Robert’s oldest daughter provides social support, taking him out to concerts in the park and keeping him up-to-date on his great-grand children. Edna’s oldest daughter can help out when she has time off of work, on mornings and weekends.
For Royale, the conversation gave her a sense of relief. She’s a planner and wanted to make sure everyone was on the same page about the future. Plus, it gave her dad a chance to weigh in on what he wants. One of his priorities? To keep making people smile.
That includes his neighbors as he’s walking down the cul-de-sac or fellow shoppers at the grocery store. One of his favorite jokes, Royale said, is to tell waiters that he’ll need a wheelbarrow to leave after a big meal. He even asked her to translate it into Chinese, once, to make sure the wait staff could understand.
“I feel like I have accomplished something, to help somebody smile,” Robert said.
“That’s his goal in life,” Edna said. “As long as he can, he’s going to do that.”
Correction: Silvia Orsulic‑Jeras’ title was corrected to accurately identify her as a senior research associate.
