Meet Susan Sullivan: A Lifelong Alzheimer’s Caregiver Volunteering to Help End the Disease

Susan Sullivan of East Providence, RI approaches her volunteer work at the Memory and Aging Program at Butler Hospital from a unique perspective. She’s been a caregiver to those affected by Alzheimer’s on both a professional and personal level for nearly five decades. Sadly, she’s witnessed the effects that Alzheimer’s has on individuals and their families countless times. But it’s just this experience that makes her such a special force in the fight against the disease.

Sullivan worked as a registered nurse before retiring a couple of years ago. She spent the last thirty of those years working in home care. After helping many of her patients and families affected by Alzheimer’s and other dementias, she found herself in the same position when her own mother was struck with the disease.

“I got to see the effects of Alzheimer’s in my professional life as we worked with clients and families to manage their needs at home. And my own mother suffered and died from Alzheimer’s several years ago,” Sullivan says. “So I understand the toll this takes, on caregivers particularly. The people around the patient really have to be able to pull a lot of weight to care for loved ones. We need a cure sooner rather than later.”

Sullivan was first introduced to the Memory and Aging Program (MAP) when her mother became a patient. Her connection to the program expanded into her professional life when MAP Director Dr. Stephen Salloway and several members of his team spoke about the program at a luncheon hosted by her nursing school’s alumni group.

“The amazing commitment of the Memory and Aging team to doing outreach in the community is so wonderful. The fact that Dr. Salloway took the time to come and speak to our small group really spoke to the fact that the team is always so willing to go the extra mile to connect with the community. That’s probably what prompted me to go and explore the volunteer opportunities at the program in the first place,” Sullivan says.

For the last two years, Sullivan has herself been part of that team making connections out in the community. She says it has been an amazing experience.

Susan Sullivan, a volunteer with the Memory and Aging Program at Butler Hospital, helps to share information about Alzheimer’s research opportunities at the Alzheimer’s Association Rhode Island Walk for Alzheimer’s in October, 2019.

“It’s a commitment of time and energy to do the training required to get started as a volunteer with the program, but it has been so valuable and worthwhile,” she says. “Most of my involvement has been in efforts to educate people about the disease and to enroll people in studies, either at community events or lately more often by returning phone calls in the office to those interested in one of the program’s latest studies. I help to get them connected to the appropriate information or get them enrolled in the Alzheimer’s Prevention Registry so they can see if they qualify to participate in any of the studies.”

“It’s great to see the amount of interest in the program within the community, and also interesting to talk with people one-on-one about some of the things they’re dealing with and struggling with. It speaks to how many families are affected by this disease, and how deeply.”

As her volunteer work with MAP continues, Sullivan says her goal is to continue making those one-on-one connections that will serve to help people while also helping to gain the participation that’s needed to allow the Alzheimer’s research studies being conducted at MAP to go forward.

“There’s such a thirst for knowledge in the people that I talk to out in the community and on the phone – mostly people who’ve been exposed to the disease, but not all,” Sullivan says. “We’re doing so much publicity about the prevalence and cost and toll of this disease on the entire family and even the wider community, how it takes a village to support the fight against this disease. Those outreach efforts are inspiring.”

Sullivan has found her outreach experience so inspiring that she has raised her own hand to participate in research, joining the Alzheimer’s Prevention Registry at Butler Hospital so that she can be considered for any current or future studies that might be a good fit for her.

She hasn’t been contacted to participate in a study yet but she says she would certainly consider it if she were.

“I have two daughters and three granddaughters. I don’t want them to go through what I did with my mom. The possibility of getting Alzheimer’s myself is always in the back of my mind. Every time you can’t find your keys, you wonder,” Sullivan says. “My mother was younger than I am now when she first started having symptoms. So that definitely played a role in my wanting to be involved in the program as well.”

Although the prospect of developing Alzheimer’s is a scary one, Sullivan says she feels hopeful about the possibility of disease-modifying treatments being developed in the near future. Which, she says, makes it all the more important to educate people about the disease and the benefits of seeking an early diagnosis if they suspect they may be showing symptoms.

“I really encourage people to reach out for information – to the Memory and Aging Program or to their primary care physician – if they have some concerns,” Sullivan says. “Explore what the resources are that could help. I do think there’s something on the horizon that will make this disease more manageable and at some point it will be more like a chronic disease that can be managed. There is reason to have hope, I think.”

Related Resources

Learn more about research studies at the Memory and Aging Program at Butler Hospital

Volunteer opportunities at the Memory and Aging Program at Butler Hospital 

Meet more Memory and Aging Program heroes & pioneers

If you’re 40+ with normal memory or mild memory loss, you can help in the fight against Alzheimer’s. Here’s how: butler.org/ALZregistry