Wisconsin Alzheimer’s Disease
|Clockwise from upper left: Dr. Carey Gleason (l) and
award recipient Jewelline Wiggins; Dr. Carey
Gleason gives the Community Engagement
Summary, Dr. Sanjay Asthana (l) with award
recipient Lula Jones; Dr. Cindy Carlsson (l-r) and
ultimately conquer Alzheimer’s disease.
Currently Carlsson and her team, including Danielle Washington who is the project’s recruiter, is part of a nationwide study called Anti-Amyloid
in Asymptomatic Alzheimer’s disease or A4 for short. As some of us age, about 20 percent of us, an amyloid plaque can build up in the brain
that may be a factor in the cause of Alzheimer’s disease. A drug, solanezumab or sola for short, has been developed that clears the amyloid
out of the brain and the researchers want to see if that inhibits the development of Alzheimer’s.
“They’ve actually studied this drug in thousands of people with Alzheimer’s disease to see if it slows down the disease,” Carlsson said. “But
by the time that people have this amyloid deposit in their brain and it stirs up all kinds of inflammation and nerve damage in the brain, by the
time they get it to people in that stage of the disease, it didn’t seem to make a difference because there is already too much damage that had
occurred. So what this study is trying to do is take a step back to look at people 20 years earlier who have this amyloid build-up in their brain,
but don’t have any memory symptoms yet and are totally normal. And so, they want to target those people, so they can give the drug early, clear
that amyloid out before there is any other damage to the nerve cells and inflammation stirred up.”
The study is headed up by Harvard University researcher Dr. Reisa Sperling and will eventually track the results of the drug on 1,000 people in
up to 60 cities primarily in the U.S. And since drugs and treatments can impact people from different racial groups differently, the study is
proactively recruiting African Americans and other people of color to participate in the study to ensure that the results reflect the impact on all
“We know that Alzheimer’s disease is more common in people who are African American or Latino,” Carlsson said. “Yet they are very
underrepresented in clinical trials. So there are a lot of assumptions made. ‘Does this medication work in different groups?’ We don’t have
good data because trials usually tend to be mainly Caucasian. Therefore there are a lot of assumptions made in how effective it will be in
different people. The goal of the study is to have at least 20 percent of the participants to be individuals from underrepresented minority
backgrounds. There is a push to make sure that it is really representative of our population and that we can get these results out and that
everyone is a part of these trials.”
Washington is concerned about the impact of Alzheimer’s on communities of color in the Madison area.
“We’re actually aiming for 20 percent representation of people from minority backgrounds,” Washington said. “That’s one of the goals and that’s
where I come in because we do know that the underrepresentation of certain groups is not good for research and health outcomes in general.
So my task is to create outreach designs and messages that will target the communities that we’re intending to serve. We really want to
increase the recruitment rates for certain people because we do know that the disease devastates communities and families. We also know
that memory is important for the preservation of history and all of our identities. There is a part of our history that is lost when we don’t have
And Washington emphasized that A4 is being conducted in partnership with the communities of color.
“The barrier is really in terms of the relationship that you build with people and trust,” Washington observed. “If you go into the community and
you initially ask for things, that’s not a great strategy. What you need to do is assess what the community needs and how you can help them.
You need to find out what their assets are and how they can be valuable to you and how you can be valuable to them. It’s about mutual benefit
For two years, participants come in once per month for a 1-2 hour session where they receive the drug solanezumab intravenously. People are
paid up to $2,000 for their participation and receive a lot of health care benefits.
“When people come in, they get detailed lab results,” Carlsson said. “Those are shared with them if they want them. They get an EKG and we
share those with them. We go over their PET scan results with them, but we don’t get a printout of their scan. I go over sample pictures with
them and then I go over their results with them. People will become more aware of their overall health. Also as a part of the study, they get
cognitive screening tests. A lot of people coming in have a family history of Alzheimer’s disease and are worried about getting it themselves.
They are really glad to get some really detailed cognitive screens and know that they are in the normal range. If people aren’t in the normal
range, which has happened, we’ve referred them for further evaluation for those memory changes. They get full physical exams as well. If they
qualify for the study, they get a full MRI scan as well.”
In addition to normal hospital patient confidentiality protocols, the A4 Study has instituted additional safeguards to ensure that participant
records are kept strictly confidential.
People interested in participating in this study should contact Benjamin Farral at 608-256-1901 ext. 11640 or e-mail him at bofarral@medicine.
By Jonathan Gramling
It was Alzheimer’s disease that influenced Dr. Cindy Carlsson’s professional course in
life. Growing up in the Detroit area, Carlsson would accompany her mother to St. Louis
when she was a teenager to provide relief to her grandfather who was caring for his
ailing wife who had Alzheimer’s disease.
“My grandfather would hardly sleep,” Carlsson recalled. “He would have to get up at
night to change her and carry her to the bathroom. Actually I think she had a different
type of dementia called frontotemporal dementia. She lost her ability to speak. She also
had Lou Gehrig ’s disease at the same time. As I watched him, it made me feel
helpless because you couldn’t do anything. You had to sit back, smile and hold her
hand. You sit with them, but there really isn’t anything to do. You’re 14-years-old and
you don’t know what to do. You feel very powerless.”
It was that sense of powerlessness that fueled Carlsson’s desire to be a geriatrician, a
physician who cares for older people, and to conduct research on how risk factors in
blood vessels affect Alzheimer’s. Carlsson wants to empower others to fight and