A study of more than 270,000 individuals, published last year, suggested that 38 percent of blacks aged 65 are projected to develop Alzheimer’s. And as the overall U.S. population grows older, this neurological illness mainly affecting aging people is expected to become a bigger, more costly problem for the medical community, patients and their families. It hits blacks harder than any race of people: African-Americans are twice as likely as whites to develop Alzheimer’s.
Willie Deese, a retired executive vice president for prescription drug-maker Merck, knows how hard Alzheimer’s can hit black families. His 88-year-old mother has the incurable brain disease. That’s why a good chunk of the $1 million that Deese donated in 2016 to his historically black alma mater, North Carolina A&T State University, went to its groundbreaking center for researching Alzheimer’s in African Americans. He’s hoping that his money and industry connections can help finally find a cure for dementia, as well as explore the role that race can have in getting patients proper treatment.
These days, from the Chapel Hill home he shares with his wife, the native North Carolinian spends his retirement serving on corporate boards and advising African Americans who are interested in pharmaceutical industry careers. And he stays busy talking about the issues surrounding clinical trials and who enrolls in them. He continues to push drug makers and everyday people, alike, to do their part to ensure that prescription drugs and other medical interventions generally are tested on both genders and every race.
Folks sat down with Deese to talk about his mother, his career, and the ways that pharmaceutical companies can be more inclusive.
When did you first suspect that your mother was ill?
About seven years ago, I noticed that she was repeating herself and forgetting things, like how to get to the room where she was staying while visiting us. I said to my wife, “Something is just not right.”
Since then, my mother’s Alzheimer’s has progressed. For almost everyone who has this disease, it progresses.
Today, she lives in a facility that takes very good care of Alzheimer’s patients. If she had her druthers, she would be in her home. But she can’t live there safely without round-the-clock care.
Since your mother has gotten sicker, how has your mom-son relationship changed?
My mom and dad both had close relationships with all nine of us children. We grew up on a farm with a lot of love, a lot of laughter, a lot of caring … in very ordinary ways.
When I was working for Merck, I’d talk to my mother two or three times a week. If she needed something done, input or advice, as she aged, she tended to count on me and my older sister–the oldest of us and the one who has assumed responsibility for most of my mother’s care–as the people she called first. It was just kind of understood that, if she needed something, she could count on me.
How do you deal with your mother’s declining health? How does it make you feel?
It’s tough to watch. I’m 62. When you’ve known your mom all of your life and remember her at her best, all of this is difficult. She used to have a very, very sharp and engaged mind.
When a loved one has Alzheimer’s, it’s as if the whole family has Alzheimer’s. In some way, shape or form, it catches everyone. And it is not a positive experience. So, the family also goes through these tough stages. Denial, resentment, anger.
When a loved one has Alzheimer’s, it’s as if the whole family has Alzheimer’s.
For me, the harshest moments are watching my mother mistreat my sister, who has a master’s degree in social work and is the person who has been closest to my mother and provided the most support. My mother can use some harsh language, at times. She can be totally disrespectful in her interactions with my sister. My sister personalizes some of that. It hurts. But my sister knows these are not things that my mother can control. She says, “This is my mother. I have to take care of her.”
I’ve received significantly less of that acute misbehavior from my mother. But I do understand and feel the hurt. Despite those behaviors, which many Alzheimer’s patients exhibit, you have to continue to love them and care for them and give them more time and attention.
How do you account for the difference in how your mother now treats you and how she treats your sister?
From a clinical perspective, I cannot tell you why that is. I can tell you–from what I know about this disease–that the differences here are normal. They may grow out of the fact that patients spend more time with primary caregivers than others. I have no more insight than that.
How does Alzheimer’s affect your mother at this point?
There are days when her mind is functioning in a normal way. You see those slivers of light, when she is her old self. She is having a conversation, remembering what she said five minutes ago. She can string thoughts together. And all of this gives you the momentary, false feeling that she is going to come out of this. That’s not going to happen.
The repeating, forgetting, confusing things, all of that comes back. With each passing day, those things worsen.
There are days when her mind is functioning in a normal way. You see those slivers of light, when she is her old self.
What was your mother’s initial response to being diagnosed with Alzheimer’s?
Largely, denial. Most people with Alzheimer’s will go through a long period of denial and almost anger.
My mother had always been very mentally sharp and keenly aware of her surroundings. Even now, she knows that something’s not right with her mind. And that awareness—that things have changed, that things are different from what they used to be—also is a symptom of the disease.
She’s lucky to be in a specialized facility, yes?
That’s right. A lot of what happens, or doesn’t happen, for Alzheimer’s patients falls along socio-economic lines. Particularly in the African American community … many people with the disease often are alone, fending for themselves and trying to take care of themselves as they deteriorate. They forget to eat, how to comb their hair and brush their teeth. They become a significant health hazard to themselves. Imagine leaving the oven or a stove burner on, or confusing where something goes in the house.
A lot of what happens, or doesn’t happen, for Alzheimer’s patients falls along socio-economic lines.
Your family’s resources and resolve have meant much in your mother’s care? What about those who are less well-off?
It’s not easy to house and care for Alzheimer’s patients, especially as they get older and require round-the-clock care. I would guess that it costs anywhere from $30,000 to $100,000 annually to provide that level of care. It is inherently expensive. And government assistance for Alzheimer’s care is extremely limited.
Why do you suggest that more African Americans than people of other races are battling this disease alone?
This is not an empirical fact, but my guess is that we tend to be underdiagnosed. In some cases, it’s not even recognized that a person has Alzheimer’s. That’s partly because African Americans, I think, have a harder time talking about illness that affects our mental state, the brain.
How did you get into the pharmaceutical business?
After 16 years in the computer industry, I was recruited into the pharmaceutical industry, not knowing a lot about it. They liked that I had experience in procurement and operations management. Once inside the industry, you learn a lot about drug research, about the way the industry conducts clinical trials … and about who gets into trials and who doesn’t. Your learn about which communities are willing to be a part of trials and which are not, and why some African Americans might shy away. They’ve been less likely to participate because they are aware of such things as the Tuskegee experiment [ed. – in which federal researchers investigated but deliberately did not treat syphilis in black Alabama men. However, fewer African Americans now see that historic tragedy as a reason to avoid enrolling in medical trials, according to more recent research].
You’ve also been pretty vocal about the need for more people of color in clinical drug trials and other medical trials and research. Why?
Years ago, the industry did not actively seek to include people of color in clinical trials. It’s doing a better job today, though there still is plenty of room for improvement.
Equally concerning is whether there is enough willingness among people of color to participate in these trials. We have to find a way to encourage the enrollment of people who are African American and other ethnicities in these trials. As we learn more about the human genome and biomarkers, it is becoming increasingly clear that medicines can be designed and personalized based on your genetic make-up. If African Americans and other races are not in those trials, we are missing an important part of the data that determines the efficacy of drugs.
We have to find a way to encourage the enrollment of people who are African American and other ethnicities in [clinical] trials.
It’s a two-way street. We have to drive that point home. Diversifying the races of people participating in medical research will take some time—but it cannot take forever. Disease does not take a day off.
What are some ways of creating a better mix of the people enrolled in clinical trials?
You do it through education and public awareness. I believe that people will enroll in clinical trials when they learn about why it’s important to participate from people they know and trust. Pharmaceutical companies need to reach out to those communities, and touch people who have influence. And our [historically black] medical schools, the Howards, the Meharrys have a role to play in helping to educate.
Our community has not been educated as well as it should be about the relative risks and benefits of trials; that’s true of Alzheimer’s trials and trials of [interventions] for other illnesses. It’s a question of both whether you know the people who are talking about this and whether you trust what they are saying. Maybe there is a specific aspect of the care or research that you may not trust. Having someone you know and trust talk about that gives you a greater sense of trust and of safety.
Were those hopes—and your mother’s battle with Alzheimer’s—the main reasons you are helping to fund North Carolina A&T’s Center for Outreach in Alzheimer’s, Aging and Community Health? It’s studying the genetics of Alzheimer’s but also providing training and other support to caregivers.
When it’s your mother or dad or grandmother, the Alzheimer’s statistics become personal. There is some scientific belief that heredity may play a role in the disease.
That’s one more example of why we, people of color, have to be willing to invest our resources and participate in clinical trials. That has to happen if we are ever going to have a chance … against this disease, which, like mental illness, can carry such stigma in the African American community. There’s no need for the stigma.
When it’s your mother or dad or grandmother, the Alzheimer’s statistics become personal.
If we choose not to talk about this, if we choose not to acknowledge the negative impact of Alzheimer’s, then 10 years from now, 15 years from now … it has the potential to be catastrophic in our community and a huge financial drain on the country.
Do you find it interesting that your career would provide you with such insight on your mother’s illness but, also, what medicine, in general, may mean for different communities?
I didn’t expect this could happen to my mother. It was just not on my radar. But when things happen, if you have an ability, knowledge or resources, then, you are called upon to use what you have to do what you can to help. That governs the way I live my life.
If my mother had to get this disease for me to have a keen interest and to want to see it eradicated, then, I am OK with that.