Study finds racial disparities in health care extend to dementia, Alzheimer’s treatment – WCPO

CINCINNATI Marilyn Andersons 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.

Courtesy of Marilyn Anderson

My husband was a relatively tall, strong-looking African-American male, and that could have resulted in over-medication or someone saying, Hey, we dont think we can continue to care for your husband here, she added. I did not have that situation, and I think thats 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 Alzheimers and dementia care.

The survey results were part of a March Alzheimers Association report and found that 66% of Black Americans believe it is harder for them to get excellent care for Alzheimers 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 Alzheimers Association Greater Cincinnati chapter.

The importance of trust

Its 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, wed be overwhelmed.

Patients of color who visit Christs 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.

Thats why the Alzheimers Associations Alzheimers and Dementia Care ECHO Program is so important, he said.

Courtesy of Dr. Robert Keyes

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 Alzheimers 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 Alzheimers Association in Ohio.

As this special report has come out and were learning more, we want to make sure as an organization were doing our part as well, Boehm said. Were making sure that were dedicating some time to this issue.

The Alzheimers Association is working to help care providers understand the concerns expressed in the organizations 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 cant 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 Alzheimers and dementia just like they are at higher risk for vascular diseases, Boehm said, so its important to make sure Black patients are properly diagnosed and treated.

A loving wifes lessons

Andersons husband was in the advanced stages of dementia when he died in December after contracting COVID-19, Anderson said.

Courtesy of Marilyn Anderson

The Greater Cincinnati chapter of the Alzheimers Association was especially supportive during the final years of Herndon Andersons life, his wife said, and she hopes telling his story will help other families, too.

During her husbands 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 theyre 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 husbands 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 youre 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.

Courtesy of Marilyn Anderson

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 Alzheimers Association Greater Cincinnati Chapter is available online. The associations special report Race, Ethnicity and Alzheimers 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 lucy.may@wcpo.com. Follow her on Twitter @LucyMayCincy.

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Study finds racial disparities in health care extend to dementia, Alzheimer's treatment - WCPO