NE Ohio man works to raise awareness of Alzheimer's, dementia within the Black community

• Older Black Americans are twice as likely as whites to have Alzheimer's or dementia.
• More than 21% of Black Americans 70 and older have Alzheimer's or dementia.
• Jerome Childers of Akron is working to raise awareness in the Black community.

Alzheimer's disease and dementia are devastating maladies with no known cure. For Black Americans, their prevalence is particularly insidious.

Disparities in health care access, distrust of the medical system, substance abuse and inadequate nutrition are all factors for why Blacks are more likely to be impacted by dementia than any other ethnic group.

Older Black Americans are twice as likely to be diagnosed with Alzheimer's or dementia than whites. An estimated 21.3% of Black Americans over 70 have some form of the disease.

Katie Kirby, director of communications with the Alzheimer's Association in Ohio and West Virginia, said her agency is emphasizing awareness in the Black community as June is Alzheimer's and Brain Awareness Month.

Jerome Childers of Akron is an Alzheimer's Association volunteer. In addition to losing his grandmother to the disease, he lost an uncle to Lewy Body dementia, the same disease that afflicted the late comedian Robin Williams.

Childers said his father has a mild cognitive impairment, and one of his father's brothers has cognitive impairment and Parkinson's disease.

Help for families dealing with Alzheimer's disease in NE Ohio

Childers, 38, who is a caregiver for his parents, said the Alzheimer's Association of Cleveland and Greater East Ohio Area is a tremendous asset.

"It's been extremely helpful to me and my family," he said. "Just to have that awareness of the disease. I think the ignorance alone, the symptoms and things that cause it can send you down the wrong path. Just having that knowledge to be able call the 24/7 hotline did wonders for me."

Help for local families:Learn more about how the Alzheimer's Association offers free respite for family caregivers

Childers said the difficulty in having conversations about Alzheimer's and dementia with people he knew led him to want to become a volunteer.

"The statistics of African Americans being affected the most, I'm definitely living that," he said. "My dad's brother passed away from Lewy Body, a form of dementia. His other brother has Parkinson's. My mother is showing signs of it (dementia), and my mother's stepfather, has it now. My mother's friend is taking care of an aunt with it, and with a touch of schizophrenia."

Though researchers aren't sure why Alzheimer's and dementia are more prevalent in Black Americans, some have theorized that it may be linked to overall health, economics and access to medical care.

"I do think the lifestyle has a lot to do with it," Childers said. "Excessive drugs (and) alcohol, overusing supplements, taking other people's medication. It's almost a neglect of health."

Childers said some people won't go to doctors due to mistrust.

"My grandmother put off going to the doctor when she had knee troubles," he said. "As a result, her weight and diabetes got out of control, which led to pain pills which led to a lot of dementia-like symptoms ... all from not going to the doctor."

Disparity and denial in Alzheimer's and some advice

Frederick Knuckles, program manager for diversity, equity and inclusion for Alzheimer's Association chapters in Cleveland and Canton, said several factors play into the disparity, including hypertension and diabetes, which are prevalent in the Black community.

"The disconnect is from socio-determinants of health," he said. "The foods we eat, the access to health care play a major role. Many people live in 'food deserts.' The other piece is, we're in denial that it's happening. All these factors play a major role."

The Alzheimer's Association is becoming more active within Black, Latino, and LGBTQ+ communities and is forming partnerships with churches, mosques, temples, and sororities and fraternities, he said. They're also setting up information booths at community festivals and fairs, including Juneteenth.

Knuckles said the association also has hired more staff for minority outreach, including a Spanish speaker, in Canton and Youngstown.

Another reason people are reluctant to seek help, Knuckles said, is because there's a mistaken belief that Alzheimer's and dementia is a mental illness. It is not.

"Some people also don't reach out because they feel they're the only ones going through this struggle," he said. "I want to send the message: You're not alone."

Knuckles said the association offers respite care and care consultation. "Folks can call in and feel confident that they'll get a live person, a knowledgeable and compassionate person."

Childers offers some advice to families in the throes of diagnosis.

"Get educated about it," he said. "For the most part, people just don't know. Your reaction is the only thing you have control over. I don't tell people too much unless they ask me. A lot of times I've encountered resentment, with people thinking I'm trying to tell them how to live. You can't force people to take care of themselves, but you can encourage them to create a positive environment."

To learn more, contact the Alzheimer's Association Cleveland Area Chapter at 216-345-5556, or the Greater East Ohio Chapter at 330-966-7343, or visit alz.org/abam or contact Knuckles at 216-342-5607.

Reach Charita at 330-580-8313 or charita.goshay@cantonrep.com On Twitter: @cgoshayREP

How you can help

The Alzheimer’s Association is seeking volunteers for initiatives across Northeast Ohio, including community education, support groups, fundraisers, advocacy and support of the nine 2024 Walks to End Alzheimer’s across the region. The chapters serve 21 counties: Ashtabula, Belmont, Carroll, Columbiana, Coshocton, Cuyahoga, Geauga, Guernsey, Harrison, Holmes, Jefferson, Lake, Lorain, Mahoning, Medina, Portage, Stark, Summit, Trumbull, Tuscarawas and Wayne.

“Millions of Americans are impacted by Alzheimer’s disease, and you can do something to help by becoming an association volunteer,” said Melissa Zapanta Shelton, executive director of the Alzheimer's Association Cleveland Area and Greater East Ohio chapters. “Our ability to reach and support those affected by Alzheimer’s and other dementia depends on people in our communities who are dedicated to the fight against this disease.”