Loretta Veney, 62, clearly remembers the first time her sister began to exhibit lapses of memory. And while the initial examples, like losing her keys or forgetting information she’d known for years, may have seemed minor, Veney sensed that something was wrong.
But what she could not have anticipated was the response she received when she took her sister to an appointment with her neurologist.
“It quickly became apparent that our being Black was a problem for him,” she said. “He was cold, insensitive and had a look on his face that told me that he really did not want to be bothered.”
“After taking the prescribed battery of tests which included a series of questions, I knew she had failed. He glanced at us and said, ‘you’re in the early stages of dementia.’ Then, he wrote a prescription and told her she’d have to begin taking meds immediately which upset my sister greatly.”
“To my surprise, he ignored her fears and hesitation and told me that if she wanted to remember me, our family and friends, she would take the medication. Finally, he said, ‘that’s what’s wrong with you people. You do not want help.’”
Veney’s recollections represent the typical treatment that Black patients and their families often face from physicians who have little tolerance for or understanding of the cultural differences which exist between Blacks and whites.
Fortunately, Veney would be able to keep her sister, maintaining the same insurance program, and subsequently found “a great physician – a white woman who immediately showed that she cared about my sister and wanted to provide the best care possible,” said Veney, who has cared for her sister for the past 15 years and lives in Clinton, Maryland.
But she says it’s been a real struggle. Her team, which once included her husband, and another sister, have since both died, in 2016 and 2011, respectively, dying on the exact same day five years apart. So now, she’s left to carry on mostly on her own, except for a niece.
“I wasn’t prepared for the costs and when I first heard about the state’s community action waiver program, I shook it off. I delayed enrolling in the program. By the time I realized that we would need the money in order to keep my sister in a group home nearby, the costs were soaring. People often don’t look ahead and have the kinds of discussions about finances that they should.”
“Even when I went to several Black churches and spoke with a few pastors about hosting a forum that would provide vital information, I was ignored. They said their folks didn’t have problems with dementia. They just didn’t want to face the truth,” Veney said.
Alzheimer’s Association Has Resources for All
But other resources came to light for Veney in the form of the National Capital Area Chapter – Alzheimer’s Association, based in McLean, Virginia.
And in a new special report, “Race, Ethnicity and Alzheimer’s in America”, the researchers examine the perspectives and experiences of people of color in regard to Alzheimer’s and dementia care and how they view Alzheimer’s disease, medical research and barriers they face in accessing dementia care. Among the findings:
Half of Black Americans (50 percent) report they have experienced health care discrimination. More than 2 in 5 Native Americans (42 percent) and one-third of Asian Americans (34 percent) and Hispanic Americans (33 percent) likewise report having experienced discrimination when seeking health care.
“These are not new numbers – in fact, we’re familiar with the story. What’s new is that the pandemic has highlighted the long-ignored disparities that still exist between Blacks and whites,” said “Eme” Martin, regional director, Health Systems, region 14: DC, MD and VA, Alzheimer’s Association.
“Now, we have a wider audience that’s hearing the message for the first time. We can fully engage them with strategies of change. First, that requires training and education, then acknowledging the challenges that persist and finally helping people become culturally competent. Then we can really work toward changing problems within the medical industry and within social service organizations.”
“Many of the people who are hearing about these challenges and disparities are within the wider audience and are in positions of leadership so they can therefore move the needle in a positive direction. We are now in a season of awareness,” Martin said.
The report includes other information that can neither be overlooked or discounted.
Blacks (89 percent), Hispanics (85 percent) and Asian Americans (84 percent) say it’s important for Alzheimer’s and dementia care providers to understand their ethnic or racial background and experiences.
Fewer than half of Black (48 percent) and Native Americans (47 percent) feel confident there is access to providers who are culturally competent, and only about 3 in 5 Asian Americans (63 percent) and Hispanics (59 percent) likewise feel confident.
Among non-White caregivers, half or more say they have faced discrimination when navigating health care for their care recipient, with the top concern being that providers to not listen to what they are saying because of their race, color or ethnicity.
Martin said bringing greater understanding about discrimination within the system and how to resolve it, is not “our” burden.
The challenges people of color are facing must be understood by the system,” she said. “They need to be willing to engage teachers who will educate them so they can provide different forms and levels of care. They need individuals who can help them better understand the cultural nuances of those who face disparity.”
“The numbers are here now, so there’s no excuse. We have a new chief of diversity, equity and inclusion, Dr. Carl Hill, and he’s committed to building partnerships, working with members of Congress on the Hill and learning from the community. This is what we need in order to provide meaningful and adequate care for all of our patients. We must show people that we are passionate about what we do – the services we provide – and that we care about each and every one of them,” Martin said.
To view the complete report, go to www.alz.org.