By Edwina Blackwell Clark
A special study is underway to determine if genetics plays a role in why multiple generations of African American families get the disease.
Brienne Blair’s grandmother, Alice Mitchum, started having mini strokes and her family started noticing some changes.
Ms. Mitchum couldn’t remember conversations. One time, Blair visited her grandmother and saw an unusual number of donor acknowledgement letters. She thought that was odd. However, one of the most telling signs that something was wrong happened in the kitchen. A resident of Kingstree, South Carolina, Ms. Mitchum knew a vast amount of southern recipes. “She’s cooked rice all of her life, now she is burning the rice.”
The mini strokes ultimately led to a diagnosis of Vascular Dementia. “It was a lack of education on our part,” Blair, of Englewood, said. “We didn’t think to investigate what strokes could do to your body and your brain.”
A study by the Centers of Disease Control (CDC), published in September, projects that the prevalence of Alzheimer’s disease will nearly triple by 2060 to impact 15 million Americans. In addition, the study found that among people ages 65 and older, African Americans have the highest prevalence of Alzheimer’s disease and Dementia at 14 percent. The rate of the disease among Hispanics is 12 percent and among non-Hispanic white individuals is 10 percent. It was the first study to forecast Alzheimer’s Disease by race and ethnicity.
With statistics like that, there is a focused effort to educate more people about the fatal and progressive brain disease. In communities of color, it has become an imperative because the diagnosis still carries a stigma.
“For a long time being a person of color we didn’t talk about it in our communities,” Blair said. “Now we’re talking about it and we are not ashamed about it and it has a name – Alzheimer’s.”
One of the Alzheimer’s Association’s strategic goals is to connect more with diverse communities. Lorna Chouinard, Vice President of Programs & Operations for the Alzheimer’s Association, Miami Valley Chapter, said, “we know there is a higher risk for Hispanic and African Americans to have Alzheimer’s and other dementias and at the same time there are cultural differences in caring for one’s loved one. As a result, we have created a Program and Diversity Advisory Board and related sub-committees to help us navigate these discrepancies and engage with populations in a more proactive way.”
She said, by using faith-based outreach, community health workers and other avenues in the Chapter’s nine-county region, “we believe that we can increase our reach to these populations so that no one ever says they wish they knew about us earlier.”
Why African Americans?
A research study on Genetics of Alzheimer’s Disease in African Americans has been launched at the University of Miami and Columbia University to find genes that affect the chances of African Americans developing Alzheimer’s.
While African Americans are more likely to develop Alzheimer’s disease, cases also show that when Alzheimer’s is present in African American families, it is more likely that it will run in the family and affect other relatives. That trend may be explained by different stressors and life experiences, but research also suggests that genetics may play a role.
In Blair’s family, not only does her grandmother have the disease, her grandmother’s sister has been diagnosed and her grandfather’s sister died from the disease. While Alzheimer’s accounts for 60-80 percent of all dementias, Vascular Dementia is the second most prominent type of dementia.
Michelle Y. Graves, host of a cable TV program “The Power of Money,” said, in the African American community, people still hesitate to tell people that their loved one has Dementia or Alzheimer’s. “I’ve never seen anything like it,” said Graves. “You will not say the reality of your family’s circumstances…The very first thing to do is to acknowledge this is happening because denial is real.”
With the television platform, she has hosted numerous shows on the topic. She encourages others to educate themselves on the disease and embrace community resources. “Don’t make it a dirty word,” Graves said.
Maureen Fagans, Executive Director and CEO of United Senior Services in Clark County, said, they definitely have seen an overall increase in residents with dementia needing in-home services. These residents are living in their homes much longer and their caregivers often ask for help with personal care, homemaking services or respite care. “The people we serve are people who don’t have other options,” Fagans said. “They don’t have savings or long-term care coverage.”
Both of Kim Willis’ parents had the disease. Her father died this year from Alzheimer’s and her mother, 82, is still being treated for the disease. Lorna Long was diagnosed at 74.
Willis remembers calling the Alzheimer’s Association’s 24/7 Helpline when her mother got her diagnosis. She’s participated in caregiver support groups and has helped recruit others to support groups.
Willis goes to churches to pass out information on Alzheimer’s, participates in the Walk to End Alzheimer’s and has developed a personal mission to help educate the community about the disease. But she admits in the beginning, even she had trouble saying that her mother had Alzheimer’s.
“I remember not using the word ‘Alzheimer’s’ when I was talking to my brother,’’ Willis said. “I used Dementia because I guess inside I did not want to say it…I was never ashamed about it. I just didn’t want questions.”
She is worried that she or her siblings might one day be diagnosed with Alzheimer’s. “I am worried about myself…..My sisters Lauren, Kristy and I, we talk about creating new pathways, doing new things. We are just saying how more deliberately we need to do new things,” Willis said.
Willis introduced Valerie Jones, of Clayton, to an Alzheimer’s caregiver support group. Valerie’s mother, Dr. Vallie Guthrie, was first cared for at home in North Carolina and is now in a facility in North Carolina.
Now a facilitator of an Alzheimer’s support group, Jones said she notices that African Americans are reluctant to share, reluctant to go through the diagnosis portion. She said what she mostly sees is families trying to fill in the gap and operating as “martyrs.” “What happens if something happens to you? What is the plan?”
She has personally come a long way since she first started getting help and now Jones is in a position to help others. But the pain of seeing her loved one slowly slip away is still heartbreaking.
Each year, Jones participates in the Walk to End Alzheimer’s. “It is very emotional,” Jones said. “I think it is because it’s a moment where you acknowledge that your loved one has it.”