According to the Alzheimer’s Association 2013 Facts and Figures report, African Americans are about twice as likely to have Alzheimer's disease or another dementia than whites but less likely to have a diagnosis. Many people dismiss the warning signs of Alzheimer's, believing that they are merely a part of typical aging.
For four years, Charlie Daniel, diversity coordinator with the Alzheimer's & Dementia Alliance of Wisconsin, has been working hard to get information about Alzheimer's out to the Madison community and beyond.
“What I'm working on right now is to bring the issue of living with Alzheimer's as opposed to dying with Alzheimer's,” Daniel tells The Madison Times in an interview at the Alzheimer's & Dementia Alliance of Wisconsin offices on Madison's west side. “Because that's what people think when they hear that word, 'Alzheimer's'. They think it's a death sentence. I want people to realize that they can live a quality life with this disease.”
To further bond with and to bring information to Madison's African American community, Alzheimer's & Dementia Alliance of Wisconsin in conjunction with the Wisconsin Alzheimer's Disease Research Center will host the 4th annual Carter Fuller Memory Screening Day on Saturday, Feb. 15, 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.
Attendees at the Carter Fuller Memory Screening Day will come in for a 30-minute screening where they will be screened by the researchers from the Wisconsin Alzheimer’s Research Center. “Dr. Carey Gleason [of University of Wisconsin School of Medicine and Public Health] and her staff will be there,” Daniel says. “They will give you feedback from your screening that same day.”
Organizers are hoping people will call ahead to schedule an appointment, but walk-ins are welcome. Everything at the event is free and totally confidential.
“Normally, to go through the screening and the testing it would cost $3,500 to do it with private insurance,” Daniel says. “We want to emphasize that we really want people to come out and do this while it's free because we don't know what's going to happen down the line.”
For the first time, this year's event will feature an “Ask A Doctor” component where there will be physicians available to answer questions on diabetes, heart disease, stroke, sleep disorders, and depression while people are waiting for their memory screening results.
Daniel says that they are looking for people who are 45 and up to come to the event. “We're finding people with early onset,” she says. “People are getting this disease a little earlier than we had hoped. So, we will screen and test you from 45 and up.”
While there are currently no treatments to stop or even slow the progression of Alzheimer’s, early detection and diagnosis can allow for earlier use of available treatments that may provide some relief of symptoms and help maintain independence longer. Delays in diagnosis mean that African-Americans are not getting treatments when they are most likely to be effective at improving quality of life, as well as taking critical steps to educate themselves on Alzheimer’s and establish support networks.
“The programming that we do — the memory cafes, the support groups, etc., are all about enhancing quality of life,” says Paul Rusk, executive director at Alzheimer's & Dementia Alliance of Wisconsin. “[For] the person with dementia, instead of focusing on deficits, we are focusing on what they can still do. It makes a huge difference in how the family and person with dementia relates if you focus in on the positive of what they can still do.”
Daniel has had four family members affected by Alzheimer's disease including her uncle, two aunts, and her father, who she lost to Alzheimer’s in 1993.
“The youngest one died when they were 87, but [the others] lived into their 90s with the disease. It has really impacted my family. Even my 11-year-old granddaughter is very aware of this disease and is a big advocate,” Daniel says. “My uncle, in particular, had great quality of life living with this disease. He had eight children taking care of them … It was a good thing to see.”
In her outreach to the African American community, Daniel has had to combat the common belief of, “Oh… Alzheimer's? That's a white person's disease.”
“What I've found working in the African American community for the last four years is that they don't want to know about the disease and they didn't want to be tested,” Daniel says. “Like HIV, this is seen as a white person's disease. But what we have found out is that there are more African Americans who are affected by this disease than any other race. The good thing about working at the [Alzheimer's & Dementia] Alliance is that I've been able to go out into the African American community not only here in Madison but in Beloit and to talk about this disease in that community so they won't be so afraid.
“I've had too many people tell me that I've had my grandmother die of this, my aunt, my father… but we didn't know what to call it,” Daniel adds. “African Americans will call it 'old-timers disease.'”
The expert staff of the Alzheimer's & Dementia Alliance of Wisconsin (ADAW) provides support to help people navigate the course of the disease and guide them through the complex maze of issues that can arise by offering personal consultations, education, access to resources, and advocacy.
“I try to give them information about the disease and tell them about our support groups and memory cafes and our ABC Workshops. Whatever information I can get to them, I do,” Daniel says. “What we've been finding out, especially during the Solomon Carter Fuller Screening Day, is that we have lots of African Americans that come out for the screening. This is our premiere African American event for Alzheimer's.
“The big battle is letting people know about it,” Daniel adds. “I have to say that people in this community have been open and affirming to me. People tell me all the time that they are glad they are seeing me do this work. I can be in a grocery store and people will come up to me and say, 'Will you call this person?' and I do give out my card for people to call me. It might take a month and it might take a year… but they do call.”
But a lack of trust is a huge reason why some African Americans don't make that call. The Tuskegee Syphilis Study continues to cast its long shadow on the contemporary relationship between African Americans and the biomedical community. Numerous reports have shown that the Tuskegee Syphilis Study is the most important reason why many African Americans distrust the institutions of medicine and public health.
“The African American community has always had trouble trusting white doctors going back to Tuskegee. For my generation, we haven't forgotten that,” Daniel says. “And these are the people we are testing — people my age who remember [Tuskegee]. It's very hard for that group to trust the white medical professionals. But when I go out to do my outreach and education, I let them know that I'm not that nurse at Tuskegee [and that] I'm not going to let them do anything that I haven't done myself. I have to build up that trust and make people feel safe and I think I've done that over the last four years.”
Beyond that, Daniel also struggles in her outreach with general misconceptions about Alzheimer's.
“This disease has been associated with mental illness for a number of years and we had to dispell that,” she says. “People don't want their family members to be classified as mentally ill. So that was one of the things I had to talk about, too. This is not a mental illness.”
Another myth is that an Alzheimer's diagnosis is a death sentence. “There are so many things that you can do — people who exercise, people who do crossword puzzles, nutrition, etc. There's a lot of good research coming out about this disease,” Rusk says.
“Many people think that there is nothing you can do, but that's not true … there's a lot of stuff you can do to help yourself and help your family,” Daniel adds. “There are services available. If you understand that it's treatable, you are more likely to reach out and get the help and services that everybody deserves. You shouldn't have to go through this disease all by yourself.”
The Alzheimer's & Dementia Alliance of Wisconsin in conjunction with the Wisconsin Alzheimer's Disease Research Center will host the 4th Annual Carter Fuller Memory Screening Day on Saturday, Feb.15, 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.