Dr. Karen Bell has had an accomplished career in healthcare – first as an infectious disease specialist and later as a health information technology and policy expert, at one point reporting to former U.S. Health and Human Services Secretary Michael Leavitt. Though she recently retired, she’s soldiering on in her commitment to make a difference in medicine – this time with a specific focus on Alzheimer’s disease, as a volunteer with the Memory and Aging Program at Butler Hospital in Providence, Rhode Island, one of the world’s leading centers for Alzheimer’s research. There are 23,000 Rhode Islanders currently living with Alzheimer’s disease, and that number is projected to grow by 17.4% in just six years.
Here, Dr. Bell shares what she’s doing to help the cause, why it matters that others get involved, and how she’s taken her own involvement to an even more personal level by giving more than just her time and talents as a volunteer…
I got involved with the Memory and Aging Program a little less than a year ago, in March 2018. I was looking for ways to become involved with volunteer work, and Brown University has always been very special to me — I was very lucky to have received a scholarship to attend the university — and I felt that volunteerism would be a great way for me to give back.
So I met with the alumni office who offered to introduce me to Dr. Salloway [Director of Neurology and the Memory and Aging Program at Butler Hospital and Martin M. Zucker Professor of Psychiatry and Human Behavior and Professor of Neurology at the Warren Alpert Medical School of Brown University]. I had read about his research on halting the progression of Alzheimer’s Disease in Time and was thrilled at the possibility of possibly working with his team.
When we met, I found him to be both brilliant and practical. I know from my prior professional experience that the combination of brilliance, practicality and empathy in a research environment is special and key for success. And then I met the rest of the team. You cannot help but be impressed by the camaraderie, the cohesiveness of those who comprise the MAP program — it’s truly a collaborative organization that gets things done. I knew right away that I wanted to be supportive in any way I could.
Not only are you a volunteer, but you’ve also become a participant in research yourself. What has that experience been like?
I got myself swabbed right at the start of my involvement with MAP, at the Brain Week event at Brown last March. [The Memory and Aging Program collects cheek swabs from volunteers with normal memory function to be used in the GeneMatch program, which connects volunteers with Alzheimer’s prevention studies.]
I later got an invitation to join a study and so I’ve had an opportunity to experience what it’s like to actually be involved in the research. At first you do go through that process where you’re wondering: “Why did they invite me? Did my swab show evidence of high risk? What if I am at high risk?” Even though I knew as a physician and someone working with the program that they have to reach out to people who are low-risk too, I still found myself going through that thought process. It does force you to think about the future in a different way, and eventually I thought, “Well yes, I could get dementia down the line, or I could have a heart attack next week.”
You can’t predict the future, but you can do things in the present to help prepare for it.
I went through the eligibility process of participating in a study and I was struck by how thorough it was, and most important, how careful and supportive the staff were with respect to providing genetic information if you want it. I was very pleasantly surprised by the whole experience. The takeaway was that the staff are well trained and caring; they do a fantastic job. Since then some of my former classmates who were also contacted to participate in research have gotten in touch, and I can now tell them participation is a very positive experience.
What has been the most striking thing for you so far about the experience of volunteering with MAP?
Most people who live here in Rhode Island don’t realize that the research being done in the MAP program is cutting edge on a global scale. The work being done in this little state by this 5-star program is leading the effort to eradicate the scourge of Alzheimer’s dementia.
To be part of this kind of illustrious program that truly has the potential to stay the ravages of Alzheimer’s is a gift that everyone here in Rhode Island has the opportunity to take advantage of — by participating, by talking about it. Participation is a real gift not only to them and their families, but also to the state and to humanity. More and more people are going to the website, signing up for testing, and sharing the word. If I can do any small thing to help the amazing research and clinical progress that MAP is doing and making, I’m grateful to be part of this phenomenal team.
To learn more about the Memory and Aging Program and how you can get involved, visit butler.org/memory.