Alzheimer’s Association Support Group for Dementia Caregivers UM

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

UM staff Mallory Martin-Ferguson, a support group facilitator, said the support group serves as a place where people can share personal experiences and first-hand testimonials related to providing care to patients with dementia.

“Theoretically, people could have shared experiences as caregivers and really recognize and understand the challenges that (caregiving) poses to people,” Matin-Ferguson said. “We wanted to make this group specifically (for) faculty, staff and students. (There is a) concentration of people experiencing stress in the UM community. We thought (the support) would be really beneficial.

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

“(My mother) passed away years ago, and I felt like I now had the capacity and the 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, Alzheimer’s Association program coordinator, oversees support services throughout southeast and south-central Michigan. According to Phalen, the group launched in January 2021 and operates virtually.

Phalen said she decided to start a support group for students and people working at the University who are dealing with stress as carers for someone with dementia. Phalen said caregivers and students can experience many physical, emotional and financial challenges.

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

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

“It’s a lot to manage these multiple responsibilities,” Phalen said. “Just to have this conversation, so (when) you might have to change your schedule a bit, (people) will be more understanding. Hopefully people can come to their group and think about these ideas.”

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

“Most of the time when we think of dementia, we think of the elderly, and we assume that their spouses may be taking care of them, but it’s actually (only) about 10% of caregivers who are spouses,” Phalen said. “That means a lot of adult children are most likely caring for their aging parents. And that’s why it’s important to focus on those professionals and students who have aging parents.”

Sara Feldman, a doctoral student in public health, cares full-time for her mother, who was diagnosed with Alzheimer’s disease in 2017. Feldman first heard about the support group when she contacted the Rackham Graduate School in September 2021 to see if she could get funding for respite care, which provides her with a temporary break due to her medical needs. Feldman has participated in the group on several occasions and said it was heartening to feel heard by people with similar experiences.

“(Caregiving) is a lonely journey, and I often don’t fit into my social circle,” Feldman said. “It’s hard to be that person to have circumstances in your life that are very different than, honestly, most people around you. (In this group) people understand… It’s really refreshing to ‘Being with people where you don’t really have to explain what you’re going through is just a kind of mutual understanding.

Feldman said the university has many resources for graduate students and she was able to secure funding for respite care for her mother. However, a number of resources available to helping students are only available to those with children, such as subsidized child care.

“My mom goes to daycare, but I don’t qualify for subsidized daycare because my mom doesn’t meet the standard or traditional eligibility criteria,” Feldman said. “I think there have been a number of cases that I’ve come across 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 the traditional model of caregiving.

“As a society, we need to understand that caregiving really encompasses caregiving for more than children,” Feldman said. “I think there’s more and more reliance on (family member care) because we don’t have a health care system or a support system that allows people that kind of access to certain care. We need to expand the way we define (caregiving) and expand the possibilities for caregivers, especially those (providing care for) people with disabilities and older people, to really be part of access to various kinds Support.

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

“There’s often a misconception that caregiving is one-sided,” Feldman said. “I take care of my mum…but she gives me times where I can absolutely laugh with her, and occasions where I can sit down and really enjoy times. I think caregiving has really enriched my life. It is a blessing in my life and (I am) very honored to be on this path with my mother. (Caring) is absolutely difficult and challenging, and yet it is also a very beautiful thing.

Students and staff who are interested in the support group can contact Michelle Phalen at 734-212-5430 or [email protected]

Daily reporter Jingqi Zhu can be contacted at [email protected].

Virginia S. Braud