Care for the Caregiver

By Carmen Peota | August 1, 2018
“Our kids, the grandchildren, even his mother have had to watch as this vibrant man just slips away,” says Jenny Kruckenberg (far right) of her husband, Gene (next to her, in green shirt). Gene has been living with dementia since 2008.

In 2008, Jenny Kruckenberg’s husband, Gene, was diagnosed with dementia. He was 56 years old. Two years later, when doctors said he had early-onset Alzheimer’s disease, Jenny — a wife and mother — assumed a new role in her family: caregiver.

In the beginning, it was largely a matter of managing the schedule and paperwork. After Gene retired early from his forestry job with the City of Shoreview, for example, she had to prove to Social Security that he was disabled. She took him to his many medical appointments. As his cognitive functioning declined, she assumed all of the household tasks and driving. By 2014, when Gene could no longer do simple things such as make toast with jam or get a paper towel out of the holder, she gave up work she loved, including a job as a fish specialist for the Minnesota Department of Natural Resources, to care for him full time. “I didn’t want something to happen to him while I was off at work,” she says.

And while Jenny bravely met each new challenge of her ever-expanding role, she’s feeling the burden of doing so. “You get more shut in,” she says. “And you do everything on your own, whether shoveling snow or paying the bills.” Now that Gene can no longer feed himself or use the bathroom by himself, she’s looking to move him from their Inver Grove Heights home to what she calls his “forever” home. “I’m not happy about having to do this—losing my soul mate and best friend. But I know it has to be done,” she says.

Jenny Kruckenberg is among the estimated 44 million Americans who are caring for a family member 50 years of age or older. A 2015 AARP study found family caregivers spend an average of 24 hours a week over a span of more than four years helping with everything from getting their loved one in and out of bed to assisting with bathing. They perform medical procedures such as giving injections or doing catheter care, and they typically are the main point of contact for their loved one’s medical team. Many also hold down jobs and run households.

In the last two decades, there’s been growing concern about the psychological, economic, and physical toll all that takes on the adult children, spouses, and others who do it.

Joseph Gaugler standing outside.
Professor Joseph Gaugler.

One of those keenly interested in family caregivers’ well-being is the University of Minnesota’s Joseph Gaugler, who was recently named the Robert L. Kane Endowed Chair in Long-Term Care and Aging in the School of Public Health. Gaugler leads a team of 10 that’s generating scientific knowledge to help caregivers and, in turn, the people they care for.

Conference Calling
Gaugler got his first glimpse of the demands of caregiving just after he graduated from Gustavus Adolphus College. As part of a summer internship, he accompanied a social worker on a home visit to a woman caring for her husband, who had Alzheimer’s disease.

“I saw firsthand what her experience was like,” Gaugler says, “trying to do daily activities, trying to do everything she could to maintain the quality of life of her husband.”

Gaugler knew then that he wanted to help people like her and began looking for graduate schools where he could explore his newfound interest. He discovered Penn State’s program in human development and family studies, where he worked under Steven Zarit, a pioneer in mental health and aging.

With a PhD in hand, Gaugler arrived at the University of Minnesota in 2005 ready to apply what he’d learned. He soon realized he’d need to connect with family caregivers in order to study them. That led to the idea for a conference for caregivers that would include basic educational sessions. He would then invite those families to participate in studies.

“We didn’t do much advertising. We just sort of got the word out, but 80 or 90 people showed up at the door,” he says of the first Caring for a Person with Memory Loss Conference in 2008.

Unwittingly, Gaugler had met a need. Families told him they wanted the conference to be an annual event and that they needed a place where they could share their experiences and learn about helpful tools and resources. The conference now attracts about 300 people, two-thirds of whom are family caregivers (others are professional caregivers). Families attend for free thanks to gifts from donors that cover conference costs, and many continue to come even after their loved one has passed away.

The conference laid the foundation for the University of Minnesota Caregiver Registry, a list of people who, like Jenny Kruckenberg, want to stay informed about the research Gaugler and his team are doing.

She says taking part in the conferences and the registry have provided an opportunity to learn not only about the disease that was overtaking her husband but also about services and support. “Staying involved and on top of this is very important to my family,” she says, explaining that her husband has a genetic form of the disease. “Our girls have a fifty-fifty chance of getting it.”

Science Meets Daily Living
In his research, Gaugler conducts studies that are designed like drug or medical device trials, where he tests an initiative on a group of subjects and then compares the results with those of a group that does not take part in the initiative.

One recent study looked at whether counseling and participation in a support group helped adult children who cared for their parents. At the end of the study period, Gaugler’s team found that the caregivers who received counseling and support were much less likely to have admitted their loved one to a long-term care facility than those who did not. The recipients also reported less stress, fewer symptoms of depression, and better quality of life.

In addition, Gaugler looks to technology to solve problems faced by caregivers and the aging. His team is studying whether placing motion sensors in the home of someone with memory problems might enable that person to stay at home longer. (The Kruckenbergs participated in that study. Jenny says she appreciated the alerts she got when Gene would open the front door.) They’re also testing a mobile app to stimulate reminiscing and another to help people with dementia remember names and relationships. And they’ve created an online tool to help caregivers find needed services.

Although much of this work is supported by federal grants, the funding from his endowed professorship allows Gaugler to stay connected to caregivers in Minnesota. It enables him to hire staff to do community engagement events, including the annual conference. “In a way, it provides webbing between the conduct of science and this very important community engagement activity, which is central to all the work we do,” he says.

Gaugler, who previously held the U’s Long-Term Care Professorship in Nursing, sees his efforts to engage with family caregivers as his way of staying grounded in the real-world needs of real people. “I feel like I know these families,” he says, “and I care deeply about them.” 

* This story originally appeared in the University of Minnesota Foundation’s Legacy magazine.

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