Delawarean Patricia Risher is actively engaged in using her voice to advocate for people living with Alzheimer’s. She is a frequently requested presenter and has participated as a member of an Alzheimer’s Association Delaware Valley Chapter Task Force that informed the development of last year’s Delaware Alzheimer’s awareness campaign. She is a leader in her church who uses that opportunity to support and educate on the topic of dementia.
In honor of Black History Month, Patricia shared her insight on Alzheimer’s, her mother’s journey with the disease, and what she wants the Black community to know.
Tell us about your experience with Alzheimer’s.
My mother, Mildred, probably had Alzheimer’s long before our family recognized it. When my siblings and I noticed signs of cognitive decline, they were little things…subtle changes. When we visited her doctor with her—the same doctor she had for more than 40 years—he would never diagnose her. “She’s fine,” he would say. When my mother required more intensive care than what our family could provide, she moved to a residential community. It was there that staff told us our mother likely had Alzheimer’s.
What would an early diagnosis have meant for your mother and your family?
An early diagnosis would have eased a lot of my mother’s anxieties. Her doctor probably didn’t want to tell her she had a fatal disease he couldn’t do anything about. It’s a real fear for doctors. But it’s also a disservice for individuals and their families.
Many people don’t realize that Black Americans are twice as likely to develop Alzheimer’s disease as older white Americans. They are also more likely to be diagnosed in the later stages of the disease when they are more cognitively and physically impaired—and therefore in need of more medical care.
What is your advice to others?
Early detection and diagnosis are so important. If you, or someone you care about, is experiencing a memory or other cognitive issue, address it. Seek help. Be relentless about it. Get the answers you need. Also, be proactive with your health. There are things you can do at any age to help prevent cognitive decline. Eat a healthy diet. (We’ve gotten confirmation that processed foods are harmful to your brain.) Move your body. Get enough sleep. Challenge your mind. It’s never too late to integrate healthy habits.
What can you share about the importance of clinical trial participation?
Despite their increased risk, Black Americans are underrepresented in clinical trials, making up only five percent of all trial participants. Without proper participation by Black Americans and other population groups in Alzheimer’s trials, it is impossible to get a complete understanding of how racial and ethnic differences may affect drug efficacy and safety. I suggest people explore TrialMatch, the Alzheimer’s Association free clinical study matching service. Only through research will we find treatments and a cure, and every group should be represented in the science.
Is there anything else you want people to know?
The world is not equipped to deal with this disease. Get educated so you can be best prepared to handle it. When my mother would cry, my family could have helped her feel less alone if we had understood what was happening to her. The good news is that there are support services and resources out there. The Alzheimer’s Association provides free education programs, support groups, a 24/7 Helpline (800.272.3900), a comprehensive website and more. Connect with them to find the support you need. Then share this information with a friend or relative. We need to educate each other.