A drawing of an older woman with a younger girl on the left, with her arm wrapped around the woman, and a younger boy sitting beside her on the right.
Design by Jennie Vang

The Greater Michigan Chapter of the Alzheimer’s Association has a support group for dementia caregivers who are students and staff at the University of Michigan, Eastern Michigan University, Concordia University and Washtenaw Community College. The support group, conducted by trained facilitators, aims to provide a safe space for students and staff with shared experiences in dementia caregiving.

U-M staff Mallory Martin-Ferguson, a support group facilitator, said the support group serves as a place where people can share personal experiences and firsthand accounts related to caregiving for dementia patients.

“In theory, people might have some shared experiences around being a caregiver and really recognize and understand the challenges that (caregiving) brings up for people,” Matin-Ferguson said. “We wanted to do this group specifically (for) faculty, staff and students. (There is a) concentration of folks who are experiencing stress in the U-M community. We thought (the support) would be really beneficial.”

Martin-Ferguson said her personal experience as a caregiver drew her to volunteer as a facilitator in the caregiver support group. Her mother was diagnosed with early-onset Alzheimer’s disease when Martin-Ferguson was a graduate student, and she attended some support groups and found them beneficial. 

“(My mother) passed away years ago, and I was feeling like now I have the capacity and emotional bandwidth to try to give back to the Alzheimer’s Association,” Martin-Ferguson said. “So I reached out to see if I could be a support group facilitator.”

Michelle Phalen, program coordinator of the Alzheimer’s Association, oversees support services throughout Southeastern and South-Central Michigan. According to Phalen, the group was initiated in January 2021 and operates virtually. 

Phalen said they decided to create a support group for students and people working at the University who face stress as caregivers to someone living with dementia. Phalen said both staff and student caregivers can experience many challenges physically, emotionally and financially.

“If you’re working or if you’re a student, you’re going to have some unique challenges with being a caregiver, whether that is your schedule and flexibility,” Phalen said. “You probably have little to no income. Trying to figure out how to pay for care and things like that. Those are all challenges.”

Phalen said she hopes the group can be a comfortable place for caregivers to share and receive resources. Phalen also said that she hopes caregivers can come to the support group for advice on how to approach conversations with their supervisors about additional needs they may require in their situation.

“It’s a lot to manage these multiple responsibilities,” Phalen said. “Just to have that conversation, so (when) you have to maybe alter your schedule a little bit, (people) will be more understanding. Hopefully, people can come to their group and brainstorm those ideas.”

In Michigan, around 460,000 residents serve as unpaid caregivers for their family members affected by dementia. Phalen said the association hopes to provide support and resources for working professionals and students. 

“A lot of the times when we think of dementia, we think of people who are older, and we assume maybe their spouses are caring for them, but it’s actually (only) about 10% of caregivers that are spouses,” Phalen said. “That means a lot of adult children most likely are caring for their aging parents. And so that’s why focusing on these working professionals and students who have aging parents (is important).”

Public Health doctoral student Sara Feldman is a full-time caregiver for her mother, who was diagnosed with Alzheimer’s disease in 2017. Feldman first heard about the support group when she reached out to the Rackham Graduate School in September 2021 to see if she could get funding for respite care, which provides a temporary break for her because of her medical needs. Feldman participated in the group several times and said it was comforting to feel heard by people with similar experiences.

“(Caregiving) is a lonely journey, and I’m oftentimes not integrated in my social circle,” Feldman said. “It’s hard to be that person to have circumstances in your life that are quite different from, honestly, most people around you. (In this group) people just get it … It’s really refreshing to be around people where you don’t really have to explain what you’re going through. It’s just sort of mutually understood.”

Feldman said the University has lots of resources for graduate students, and she was able to secure funding for the respite care for her mom. However, a number of resources available to student caregivers are available only to those with children, like subsidized child care.

“My mother goes to daycare, but I am not eligible for subsidized daycare because my mom does not meet the standard or traditional eligibility requirements,” Feldman said. “I think there have been a number of instances that I’ve run into that I’ve basically been turned away from because my story doesn’t fit the traditional model of what caregiving looks like.”

Feldman said she hopes to see society broaden the definition of caregiving and pay more attention to the needs of caregivers who don’t fit into the traditional model of caregiving.

“As a society, we have to understand that caregiving really encompasses caregiving for more than just children,” Feldman said. “I think there’s more and more reliance on (caregiving for family members) because we don’t have a health-care system or a support system that allows people that type of access to certain care. We need to expand how we are defining (caregiving) and broaden opportunities for caregivers, particularly those (who provide caregiving) for those with disabilities and elders, to really be part of accessing various types of support.”

Feldman said people tend to focus on the negative aspects of caregiving, for example, caregiver burden, but the benefits of caregiving are not often recognized. 

“There’s often a misconception that caregiving is unilateral,” Feldman said. “I’m giving care to my mom … but she provides me moments where I can just absolutely laugh with her, and opportunities where I can sit back and just really enjoy moments. I think caregiving has really enriched my life. It’s blessed my life, and (I’m) very honored to be on this path with my mom. (Caregiving) is absolutely hard and challenging, and yet, it’s also a very beautiful thing.”

Students and staff who are interested in the support group can reach out to Michelle Phalen at 734-212-5430 or at mnphalen@alz.org.

Daily Staff Reporter Jingqi Zhu can be reached at jingqiz@umich.edu.