According to the National Institute on Aging website, through research participation, African Americans are less likely to be diagnosed with Alzheimer’s and related dementias than White participants. The website also shared African Americans are twice likely to develop dementias than Whites.
Petra Niles is a gerontologist and current associate director, of Black and African American community, education, and coordinator of the South Central-West Central Dementia Care Network at Alzheimer’s Los Angeles.
“I get to bring awareness and education to our Black community working with caregivers, family members, churches, various organizations and as many entities as possible that are willing to collaborate or work with me on educating their own communities,” said Niles.
According to the Mayo Clinic website, Alzheimer’s disease occurs when there is a buildup of proteins in the form of amyloid plaques and neurofibrillary tangles in the brain. This causes the brain cells to die and the brain to shrink. Niles shared how the public’s awareness of Alzheimer’s has sometimes been overlooked or dismissed.
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“They have a sense of it because in the past there are stories that have been shared at various community events,” said Niles.
“In the past, people may have called it senility or other negative words. This is a disease that was diagnosed in 1906 so, it’s not a new disease.”
Niles continued, “The ability to take care of family members when family members were more intergenerational, living together, it may have gone without—this is what getting old looks like so, that’s what people kind of think as well.
“When you get old, things happen and this is just one of those things.”
Niles shared that most important action that can be taken for a loved one is taking them to a doctor or a primary care physician. She also shared that this a process that’s going to take time, love and patience.
“Don’t diagnose, don’t self-diagnose, don’t diagnose anybody,” said Niles. “It’s a matter of making a visit to the doctor or health professional and sharing what you’ve noticed so that they can make the proper diagnosis.
“This is not a disease that is diagnosed in 15 minutes, but there’s a lot of work to be done, questions to be asked, family history and a number of other things to be able to make the proper diagnosis.
“Before the diagnosis and after the diagnosis, it’s a challenging complicated disease.”
She also shared some of the signs and symptoms to look for when it comes to Alzheimer’s.
“When somebody feels unable to handle the day-to-day activities of life and we’re talking about from the time they get up in the morning until the time to go to bed, they struggle with planning and coordination of things.
“It may be a problem with managing finances and paying bills, not paying them or paying them over and over. Personality changes with anxiety, sadness and anger, repeating questions over and over because they don’t remember that they’ve already asked that question or sharing stories over and over because again, they don’t remember that they have shared that story already.
“Getting lost is one of the issues that we are dealing with at an upcoming event in May—wandering or getting lost.
“You get the silver alert for seniors and who knows if they have a dementia, but we do know that maybe seniors who have lived in their communities for many years and live by themselves and go out to do something and they struggle returning home, trying to find their way back home.”
Niles spoke about the current research being done on Alzheimer’s especially on its prevalence in the Black community. She also shared one of the ways the community can contribute to fighting Alzheimer’s begins with them.
“Research requires that there are participants,” said Niles. “There are ways of getting it involved in clinical trials.”
She continued, “When individuals are going to their doctors, their doctors are quite often aware of a variety of research opportunities that they can share with their patients, but there are organizations, major research organizations here in California and locally there’s USC and UCLA that offers a variety of trials and research.
“There’s also Alzheimer’s Los Angeles, we, who can connect people with some of the basic opportunities for research.”
Niles is well aware of the trepidation many feel in the Black community when it comes to medical research.
“It’s the willingness to do it and there’s a historical perspective that has been negative and people talk about that, but how do we move forward from that?” said Niles.
Alzheimer’s Los Angeles works in the community, helping families, caregivers and those living with the disease to be able to function as best as possible. They also offer free classes in-person and online. They will be having a Faith & Health Luncheon at West Angeles Cathedral on May 15.
“The focus of that luncheon is wandering or getting lost because it is a difficult problem,” said Niles. “It’s a problem within the community and when I’ve been talking to people, the response has been, ‘my dad wandered before, but he came home.’
“And so, if somebody’s wandered, they will do it again and you know the next time, unfortunately, they may not come home because being in the community, there’s so many things happening, you just never know.”
For more information about Alzheimer’s Los Angeles, please visit www.alzheimersla.org .
