Many people dismiss the warning signs of Alzheimer's disease because they believe that the symptoms are a part of normal aging. Unfortunately, they are too often diagnosed too late and miss the opportunity to get the best care possible. This is of even greater concern for African Americans, who are more likely to develop Alzheimer's disease than whites.
With this in mind, the Alzheimer's & Dementia Alliance of Wisconsin in conjunction with the Wisconsin Alzheimer's Disease Research Center and the Madison Community Foundation will host the 3rd annual Carter Fuller Memory Screening Day on Saturday, Feb. 16, 10 a.m. to 4 p.m., at the Urban League of Greater Madison on Madison’s south side.
Dr. Solomon Carter Fuller was the first black psychiatrist in the United States and played a key role in the development of psychiatry in the 1900s. Dr. Carter Fuller also worked closely with Dr. Alois Alzheimer, the namesake of Alzheimer's disease.
“We’ve had great turnouts at the first two events,” says Charlie Daniel, diversity coordinator with the Alzheimer's & Dementia Alliance of Wisconsin. “We hope to see that again. Our focus is to really bring out as many African Americans as possible to be screened. African Americans are known to suffer from Alzheimer’s disproportionately — as any other disease, we are at the top of the list. The emphasis this year is to really have more African American tested and screened.”
“We’re one of the first if not the first organization to have a Solomon Carter Fuller Memory Screening Day,” adds Kristin Larson, director of development and communications at Alzheimer's & Dementia Alliance of Wisconsin. “We’re very excited about hosting the event once again.”
This event will help raise awareness of Alzheimer's disease in communities of color and educate about risk factors, incidence rate, ways to reduce the risk, and steps to take if memory problems occur. It will also help raise the comfort level for people in seeking help and put them in contact with organizations like the Alzheimer's & Dementia Alliance, for support, information, education, and advocacy. Participants can receive a confidential memory screening.
It’s a 30-minute screening and you’re screened by the researchers from the Wisconsin Alzheimer’s Research Center. “You get the feedback that same day from a doctor who will tell you either things are fine and come back and see us in a couple years or that we have to make a referral for you to go see a doctor,” Daniel says. “Everything done on that day is confidential. So, you don’t have to worry about anything and can feel comfortable and safe coming in and getting that screening.”
Sometimes, people just don’t want to know about things when it comes to their health. And that fear makes them avoid talking to medical people about anything. However, Larson stresses that knowing about your condition will give you so many options.
“The reason that we’re pushing screening so hard is that if you do have dementia, you want as much time as possible to make plans, to make all the decisions you can in terms of finances and how you want to live your life,” Larson says. “Plus, people don’t realize that there are things you can do to help minimize the side effects and to make living with memory issues easier in the long run. The more support you have around you, the better off you’ll be.
“We offer care consultations on a regular basis for anybody who calls us worried about their own memory issues, worried about the memory issues of a loved one or behavior problems that pop up throughout the days,” Larson adds. “We’re really focused on helping people live well for as long as possible with those challenges.”
For Daniel, Alzheimer’s is very personal — she had two aunts that have died from Alzheimer’s disease within the last four months. She also lost her father to Alzheimer’s in 1993.
African Americans have a higher rate of vascular disease (diseases involving blood vessels, including heart attack and stroke) — one of the suspected risk factors of Alzheimer's disease. Alzheimer's & Dementia Alliance of Wisconsin is hoping to reduce these risk factors and reverse the growing trend of Alzheimer's disease among African Americans.
“There are a lot of things that you can do,” Larson says. “They are researching nutrition, researching medication ... any early diagnosis is the best possible thing people can do — especially in the African American community.
“We make accommodations for everybody. There are no barriers. If somebody wants to be tested, they will be tested,” Daniel adds. “Transportation is provided if you need transportation. The only thing we don’t provide is childcare. But I’ll babysit if somebody needs to get tested.”
It’s an important event to take advantage of because, Daniel says, the screening would normally cost $3,500-4,000. Participants at Solomon Carter Fuller Memory Screening Day get everything for free. “I’m advising everybody to get this done now because it’s a project. This could be gone in the five years,” she says. “People are going to want to get tested before they have to start paying. That’s why I’m so adamant about going out into the community and spreading the word about this.”
There will be researchers and doctors there including renowned Dr. Sanjay Asthana, head of the study.
“It’s a great opportunity to connect and to learn what the resources are available whether there is a concern or not,” Larson says. “I think the community tends to shelter themselves and as much as we try to get the word out unless you’re in that situation where you really think you need the support, you’re not really looking for it. So, this will be right there in front of people and people can connect immediately.”
There’s an image out there in the minority community that Alzheimer’s — along with many other diseases — is a “white person’s disease.” “Well, this is a black person’s disease and we need to take note,” Daniel says. “Black people are twice as likely to get Alzheimer’s.”
Daniel does a ton of education and outreach in the Madison-area community around Alzheimer’s working with churches and agencies and community groups. “We work with Rev. Anthony [Wade] of Second Baptist Church, we work with the Lussier [Community Education] Center, the North/Eastside Senior Coalition, the East Madison Community Center, Rev. David Smith and his church [Faith Community Baptist Church] and Rev. [William] Badger and his church [New Beginnings Alliance Church.] We are out there all the time.”
She is getting the word out to anybody and everybody who is as young as 45 years old and up. Daniel says that it’s important to look very closely at your family history. “If there is somebody in your family who has had the disease — I don’t care if it’s an aunt, uncle, grandparent — then you should really be going in to get screened,” she says.
“I don’t want this disease to continue to be a silent epidemic in the African American community because right now it is and it reminds me of cancer in the ‘50s and ‘60s and it reminds me of HIV/AIDs in the ‘80s,” Daniel adds. “Everything is hush-hush. Nobody wants to talk about. But with the work that I do I’m trying to bring this out into the open.”
The Alzheimer's & Dementia Alliance of Wisconsin in conjunction with the Wisconsin Alzheimer's Disease Research Center and the Madison Community Foundation will host the 3rd Annual Carter Fuller Memory Screening Day on Saturday, Feb.16, 10 a.m.-4 p.m. at the Urban League of Greater Madison, 2222 Park Street.
For more information or to reserve a screening spot call the Alzheimer's & Dementia Alliance of Wisconsin at (608)232-3400.