How you think, positively or negatively, can have a huge affect your experience in Alzheimer’s care and dementia.
“Rev. Alex Gee’s mother has Alzheimer’s and he was on the radio recently and he said a wonderful line about how they have decided not to mourn their mother now but to accept her for who she is and how she is and to celebrate her,” says Fabu, a former poet laureate of Madison, educator, and consultant in African-American scholarship, culture and arts. “And that’s just a very wonderful strategy because it can be very devastating to people to see that decline in their loved one.
“That’s really different from most people because most people feel so devastated over the way that Alzheimer’s can take away the mind and health of their loved ones,” Fabu adds.
Fabu was part of a large group of mostly African-American community members making up the African American Alzheimer’s and Dementia Alliance Community Advisory Board who gathered at Mt. Zion Baptist Church on Feb. 15 to discuss strategies and to plan next weekend’s Solomon Carter Fuller Community Discussion about Alzheimer’s Disease and Memory Screening Day. This annual event is held every year on Madison’s south side during Black History Month and celebrates Dr. Solomon Carter Fuller, a pioneer in Alzheimer’s disease research and the first African American psychiatrist.
“We want people to talk about Alzheimer’s disease, whether they are caring for a family member or friend with the disease or are simply worried about their own memory,” said Charlie Daniel, diversity coordinator with Alzheimer’s & Dementia Alliance of Wisconsin. “We want people to know that it’s okay to say, ‘I need help caring for grandma’ and know that there are programs and services available. Having this conversation will hopefully encourage people to start talking.”
The Wisconsin Alzheimer’s Disease Research Center (ADRC) and the Alzheimer’s & Dementia Alliance of Wisconsin (ADAW) will host Dr. Keith Whitfield, provost of Wayne State University, who will give a free public talk, “Mind Over Matter: Healthy Cognitive Aging with an Emphasis on African American Men,” at the 7th Annual Solomon Carter Fuller Community Discussion about Alzheimer’s Disease and Memory Screening Day.
An expert on aging among African Americans, Whitfield has published 200 articles, books, and book chapters on cognition, health, and individual development and aging. The event begins at 6:30 p.m. on Friday, Feb. 24 at Mt. Zion Baptist Church, 2019 Fisher St on Madison’s south side. Whitfield’s talk will be followed by a community discussion about Alzheimer’s disease and a reception. Earlier in the day, he will lead medical students, residents, fellows and other trainees in a “Student Round Table Luncheon with Dr. Keith Whitfield.”
The Alzheimer’s Association has identified an emerging public health crisis among African Americans, and organizers are working hard to make sure African-American men, in particular, attend the events which will include community workshops and panels at the Urban League of Greater Madison on Saturday, Feb. 25.
“The panels are so important because people who are taking care of a loved ones who have the disease can go listen to other strategies and learn about things that are being done,” Fabu says.
While at the Urban League on that same Saturday, members of the public will also be able to schedule a memory screening appointment at the 7th Annual Solomon Carter Fuller Memory Screening Day. Advisory board member Bobby Moore has been working hard to get people to come to the screening from his fraternity, Alpha Phi Alpha, and his Prince Hall Masonic Lounge.
“Our lodge has a lot of elderly people in it and it’s good to get them in,” Moore tells Madison365. “One thing about the screenings is that it eliminates a lot of the misnomers about the disease in general. The screening is really, really important. That’s a $3,500 screening if you just went and got it done without being at the event next week.”
For Moore, the work he does around Alzheimer’s is very personal.
“My mother passed away about 7 months ago and my dad has looked like he has experienced some of the early symptoms of Alzheimer’s,” he says. “I just wanted to get a little more clarity and a little more information about it and I knew that Charlie [Daniel] was doing this study. I’ve known here for years and she asked me to be on the advisory board.”
According to Administration on Aging, Alzheimer’s disease is the fourth-leading cause of death among African-American elders, possibly due to the higher incidence of heart disease, diabetes, and high blood pressure, all of which are risk factors for dementia. The epidemic of Alzheimer’s will continue to spread over the next 30 years, as the number of African Americans entering the age of risk more than doubles to 6.9 million.
“For African-American men, this is the population that is probably the least aware of this disease, so it’s important that we get the information out,” Moore says. “It can be hard because a lot of people don’t want to know. Alzheimer’s has always been taboo in the black community. People don’t ever want to think of their loved ones as being forgetful or suffering through this particular disease. Sometimes they would rather not know. That’s what happens a lot of times in our community.
“They need to know that there is a lot of help they can get. And that is our task: to make people aware of all the help that they can get and all of the services that they are entitled to,” Moore adds.
Kristin Larson, director of communications for the Alzheimer’s & Dementia Alliance of Wisconsin, sees the event as a great opportunity for community members to talk to professionals who can really help.
“There’s still a lot of confusion about what is normal aging and when you should be concerned. A lot of people will attribute changes in their memory to those senior moments that are just supposed to be normal,” Larson tells Madison365. “But when those senior moments go beyond … that’s when you need to be concerned. If you’ve always been really good at balancing your check book and your money and all of a sudden the math is not coming easy to you, then maybe it is time to be checked.
‘At the screening, you’ll also have the chance to sit down with a physician after the fact and go over the results and they can provide that reassurance or make that connection with your primary care physician and discuss it more,” Larson adds.
Currently, there is no cure for Alzheimer’s. But drug and non-drug treatments may help with both cognitive and behavioral symptoms. Researchers are looking for new treatments to alter the course of the disease and improve the quality of life for people with dementia.
“There are treatments that can help mitigate some of the symptoms, but that doesn’t last forever,” Larson says. “So what the Alzheimer’s and Dementia Alliance really tries to do is to help people manage those situations that come up where you are just at a loss and you don’t know how to manage some of those cognitive changes or behaviors that may result when a person with dementia is trying to communicate what they are experiencing and they don’t have the words and can’t put those emotions that they are feeling into words. There is a communication gap. So, working with the Alzheimer’s Alliance, we can help you understand what the symptoms of the disease are and what the effects of dementia are and as a caregiver how you can respond to some of those symptoms and improve the quality of life as the disease progresses.”
Too often, people will just try to pray the Alzheimer’s away when there is so much great support out there.
“They do have cutting-edge medicines and they also have great support groups. They also can go in and redesign a person’s home so they can stay in their own home longer,” Fabu says. “And as far as those prayers go, the prayers should be to give you the strength to meet this with courage and not to deny it.”
The 7th annual Solomon Carter Fuller Community Discussion about Alzheimer’s Disease and Memory Screening Day can be a tremendous community resource to answer any of your questions about Alzheimer’s and dementia.
“It truly is a great event. This year’s focus is to really try and get African American men involved and to be screened so that if they are concerned about cognitive changes, they can act on those changes after having the screening,” Larson says. “If they are not concerned, they can be reassured that their baseline is normal and use that as a springboard for moving forward.”
“The ultimate goal is to take care of our brain health and our mental health like we would anything else,” Fabu says. “So, this is an important part of your life and your lifestyle. Unfortunately, this dreaded disease is increasing, so why not take the time to learn more about? Not just for the elders in your family but also for yourself. To stay as healthy as possible. The ultimate goal is to educate people about the disease and to help people keep their memories. We all need to keep our memories.”
Members of the public can schedule a memory screening appointment at the 7th Annual Solomon Carter Fuller Memory Screening Day by calling (608) 232-3400 or toll-free 888-308-6251. Walk-in appointments are also available until 2:15 p.m. To see a full schedule of both days’ events or to register, click here.