Data from the Alzheimer’s Association® 2021 Alzheimer’s Disease Facts and Figures report highlights the barriers communities of color face in getting an Alzheimer’s diagnosis and receiving care. Vickie Stephens is caring for her family and helping the African American community.
The impact of Alzheimer’s on the African American community
Currently Alzheimer’s is the 3rd leading cause of death in California and the 6th leading cause of death in the United States. In 2020, there were 690,000 Californians aged 65 and older living with Alzheimer’s disease. Approximately 18% of these people are African American.
Because older African Americans are about twice as likely to have Alzheimer’s or other dementias as older whites, it’s no surprise that Vickie had three people in her life who have lived with dementia: her grandmother, stepfather, and father.
Looking up to her dad
Vickie’s father, Johnny, is smart man who loves music, teaching and being with his family. He has a bachelor’s degree in music. When music programs began to get cut from schools, Johnny went back to school and received a master’s degree in mathematics. Johnny continued to teach until his mid 70s when he retired.
“My dad was very disciplined,” said Vickie, “He did jumping jacks at 5 a.m. and sit-ups before work. He did math problems to stay sharp. I always looked up to him and how he would challenge himself.”
Getting a new roommate
Because she was Johnny’s only child, Vickie felt responsible to care for her father as he aged. Since her children are adults and she was living alone, she and her father became roommates and friends. Vickie and Johnny would travel together and go to wrestling matches, something Johnny loved to do.
However, after his retirement, Johnny became more forgetful. In 2011, he went to a doctor and was diagnosed with Alzheimer’s disease. Vickie is one of the 1.1 million Californians who provide unpaid care for people living with Alzheimer’s or other dementias.
“I would never abandon my father,” shared Vickie. “He’s all alone, and I felt obligated to be his caregiver. After his diagnosis, the noise at athletic events was too much. We’d watch TV and cook together.”
Moving to a care setting
Johnny is a veteran, and as such, he qualifies to get care through the Veterans Health Administration. Thinking that one day he may need more care than she could provide, Vickie placed Johnny’s name on the waiting list for a bed at a VA long-term care setting.
His name came up quicker than expected, and Vickie had to make a decision, continue to care for her dad in her home, or move him into the VA. “With much prayer and the support of family and friends, I made the decision for him to go into the long-term care facility at the VA,” said Vickie.
“That was one of the most difficult things to do. I couldn’t give him that level of care. 24-hour nurses would be there for him, so I could keep peace of mind.”
The challenges of no diagnosis
After moving her father into the VA, Vickie’s stepfather, Arthur Mc Cants began to also show symptoms of dementia. However, even after visiting the doctor, Arthur would not get a diagnosis.
“Dementia came fast and furious for him,” said Vickie. “My stepfather would not do testing. This was my first-hand experience with doctors who are afraid to tell patients the truth.”
Unfortunately, Arthur is not alone. African Americans surveyed for the Facts and Figures report were twice as likely as Whites to say they would not see a doctor if experiencing thinking or memory problems. One in five African Americans say they would feel insulted if a doctor suggested a cognitive assessment.
Sadly, Arthur became aggressive and threatening. Since he refused to even admit he had dementia, Vickie’s mother was unable to help him. Fearing for her own life, she moved in with Vickie.
“When a person is in denial, how do you get them to accept the diagnosis,” asked Vickie. “He didn’t want to know the truth. He became mean and abusive. He accused my mom of sleeping with the neighbor. He was never that person.”
Arthur passed in 2019.
Surviving the pandemic
Individuals living with Alzheimer’s, particularly those in long-term care settings, are extremely vulnerable to COVID-19. In 2020 4,643 more Californians died from Alzheimer’s or other dementia than average for the prior five years, an increase of 18.8%. This was the second highest increase in the United States.
Vickie is lucky that her father’s care setting hasn’t had any cases of COVID-19 yet. “It has been very difficult,” shared Vickie. “It was at least 90 days before I could see him. Unfortunately, we do what we have to do. My dad and I do window visits and video calls.”
Before COVID-19, Vickie and her dad would play music and he would sing to her. Now he will read the newspaper to her over video calls.
“He gets good care,” said Vickie, “They’re doing a great job. But It’s not the same as when you’re able to touch and hug and feel your loved one. It’s difficult with the COVID situation but I’m still committed to being there for him as long as he’s aware and knowledgeable of who I am.”
Becoming a volunteer
Vickie found the Alzheimer’s Association through one of her Alpha Kappa Alpha (AKA) sorority sisters. “My sorority sister got a letter from the Alzheimer’s Association and reached out to me,” said Vickie. “She said, ‘I know you’re passionate about Alzheimer’s and you’re caring for your dad. This is something you may want to be involved with.’”
For almost a decade Vickie has been a dedicated volunteer for the Alzheimer’s Association. She has participated in Walk to End Alzheimer’s® as well as The Longest Day®, but got her start as an advocate. At the time, she spoke with her congressperson about passing a bill to help get more transparency for people who are being diagnosed with dementia.
“I had a chance to go to Washington DC for the Advocacy Forum,” said Vickie, “not to represent myself, but to represent the 300,000 members of my sorority AKA. They’ve been a big supporter of health and wellness.”
Currently Vickie is working with Karla Fields, Outreach Specialist for the Alzheimer’s Association to help provide education classes geared towards the African American community. “Most people don’t understand that Alzheimer’s isn’t a normal part of aging,” said Vickie.
According to the Facts and Figures report, 55% of African Americans surveyed believed that significant loss of memory or cognitive abilities is a “normal part of aging” rather than being an indicator of disease. Vickie continues, “But [in the African American community] no one wants to talk about it. There is a lot of stigma and we need to share the knowledge.”
Looking for a clinical trial
Clinical trials are research studies conducted with human volunteers to determine whether treatments are safe and effective. Without clinical research and the help of participants, scientists won’t be able to find a way to treat, prevent or cure Alzheimer’s disease.
However, 67% of African Americans are less interested in participating in clinical trials to prevent or slow the progression of Alzheimer’s disease. The most common reason cited for not participating is not wanting to be a “guinea pig.” This sentiment was especially strong among nearly 70% of African Americans.
Vickie does not share this sentiment and is hoping to find a clinical trial she can be a part of. “Personally, I am supportive of clinical trials and research,” said Vickie. “For other people, a lot of it is lacking trust and knowledge on how this thing works. The more educated we are, the more we can make better decisions in our community and our culture. If I can make a difference by participating in a clinical trial, I’m going to do it.”
Hoping for a cure
There is some concern that when a cure is found, it will not be shared equally based on race, color or ethnicity. African Americans surveyed were the least likely to report wanting to participate in clinical trials. 45% of African Americans were worried a clinical trial might cause sickness and they were also twice as likely as other groups to say they “don’t trust medical research.”
“I can’t complain about what someone else is doing if I don’t do my part,” said Vickie. “Some of my peers weren’t happy seeing the research or where the dollars go, and walked away [from the Association]. If everyone walks away, we’ll never get what we need. Someone has to stay and hold the Association and any other groups accountable for making a difference.”
Advocating for her own brain health
Because Vickie had both a father and a grandmother with dementia, she’s determined to live a happy and healthy life. She does her best to follow the Alzheimer’s Association brain health tips.
“I want to be able to remember my children and grandchildren,” said Vickie. “I love being active. I practice meditation, participate in Bible studies, do puzzles, and I’m running my first 10k.”
Vickie suggests caregivers use activity to help cope with stress, stay healthy and pass the time. “This past year with the pandemic I haven’t been able to hug my dad or see my dad except behind glass. It gets tough. By staying active it makes each day just a little bit easier.”
Find out more about this year’s Facts and Figures report by going to alz.org/facts. For information on resources for the African American community, visit our website.
- African American Resources
- Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures
- Information for caregivers
- Alzheimer’s stages and behaviors
- Become a volunteer
- Participate in a clinical trial
- 10 Ways to love your brain