CINCINNATI — Marilyn Anderson’s late husband, Herndon, was only 50 when he started experiencing problems with his memory.
Doctors determined he had mixed dementia, where multiple types of dementia were occurring in his brain at the same time. Anderson used her skills as a nurse to care for her husband at home for 10 years before his disease became too difficult for her to manage.
When it came time to move him to a nursing home, she had concerns as the wife of a Black man and was relieved to find a facility where many of his direct care providers were Black, too.
“Particularly when a person might have days or times when, you know, their behavior is the result of their feeling agitated or more confused, it was really helpful,” Anderson said. “I was very grateful that there were staff members there that were not overwhelmed by that or would not be fearful of him.”
“My husband was a relatively tall, strong-looking African-American male, and that could have resulted in over-medication or someone saying, ‘Hey, we don’t think we can continue to care for your husband here,’” she added. “I did not have that situation, and I think that’s largely because there was a team of staff members there who were able to identify with him and connect with him and were not afraid of him.”
Two national surveys released earlier this year raised concerns about discrimination as a barrier to Alzheimer’s and dementia care.
The survey results were part of a March Alzheimer’s Association report and found that 66% of Black Americans believe it is harder for them to get excellent care for Alzheimer’s disease or other types of dementia. In addition, 40% of Native Americans, 39% of Hispanic Americans and 34% of Asian Americans believe their own race or ethnicity makes it hard to get care.
“One of the challenges is that numerous studies have told us that about one in four patients and families struggling with dementia really get a good quality of care,” said Robert Keyes, co-director of The Christ Hospital Health & Aging Center and a board member of the Alzheimer’s Association Greater Cincinnati chapter.
The importance of trust
“It’s a relatively somewhat scarce resource already,” Keyes said. “If everyone who really needed the specialty care would all of a sudden go to the specialist, we’d be overwhelmed.”
Patients of color who visit Christ’s Health & Aging Center typically get referred there by their primary care physicians, who often are the same ethnicity, Keyes said, and those doctors have the trust of their patients.
“It really helps us to partner with other primary care physicians who say, OK, this is where you can go and get treatment and get some benefit,” he said. “That partner is crucial, I think, and the trust that is generated from that.”
That’s why the Alzheimer’s Association’s Alzheimer’s and Dementia Care ECHO Program is so important, he said.
The six-month program uses videoconferencing to pair specialists with primary care doctors so they can share information and learn from each other. Keyes said the program does a good job of helping primary care doctors learn more about the best ways to care for people with Alzheimer’s and dementia.
Project ECHO (which stands for Extension for Community Healthcare Outcomes) has included discussions of racial disparities in care but soon could focus one of its sessions specifically on the topic, said Amy Boehm, the health systems director for the Alzheimer’s Association in Ohio.
“As this special report has come out and we’re learning more, we want to make sure as an organization we’re doing our part as well,” Boehm said. “We’re making sure that we’re dedicating some time to this issue.”
The Alzheimer’s Association is working to help care providers understand the concerns expressed in the organization’s special report released in March, Boehm said, and wants to make sure doctors are informed about clinical trials for new medications in development.
“The other part is just making sure that we are really partnering strategically with other community-based organizations because we know one organization can’t tackle this alone,” she said.
The association also has a special African American Caregivers forum coming up on June 24 to help families navigate dementia care.
Black Americans are at higher risk for Alzheimer’s and dementia just like they are at higher risk for vascular diseases, Boehm said, so it’s important to make sure Black patients are properly diagnosed and treated.
A loving wife’s lessons
Anderson’s husband was in the advanced stages of dementia when he died in December after contracting COVID-19, Anderson said.
The Greater Cincinnati chapter of the Alzheimer’s Association was especially supportive during the final years of Herndon Anderson’s life, his wife said, and she hopes telling his story will help other families, too.
During her husband’s 16-year experience with dementia, Anderson said she learned that when people living with dementia lose their ability to communicate clearly, they are vulnerable to mistreatment or poor-quality care when they’re hospitalized.
Also, family caregivers who are close to the person with dementia have valuable information that health care professionals might not get otherwise, she said.
“They know their loved one better than anyone else,” Anderson said. “Whether they have a health care background or not.”
Anderson recalled a time when her husband was hospitalized. She tried to tell the staff that her husband’s behavior had gotten more out of control after he took a particular medication. But before she could explain, she said, the staff gave him the same medication that had caused such a problem.
“That can happen, particularly if you’re not right there,” she said. “Which makes it difficult for you to feel like you can ever leave.”
Anderson said she knows problems like that can happen to any family, regardless of race. But when health care providers actively seek information and listen well, she said, they can help reduce the harm that hidden biases can cause.
The Alzheimer's Association African American Caregivers forum -- Empowering African Americans in Navigating Dementia Care -- will be 5-6:30 p.m. June 24. To register, call 513-342-6306.
More information about the Alzheimer’s Association Greater Cincinnati Chapter is available online. The association’s special report “Race, Ethnicity and Alzheimer’s in America” is available online, too.
Lucy May writes about the people, places and issues that define our region – to celebrate what makes the Tri-State great and shine a spotlight on issues we need to address. To reach Lucy, email firstname.lastname@example.org. Follow her on Twitter @LucyMayCincy.