Caring for the Caregivers
University of Minnesota Professor Joe Gaugler develops support systems for families tending to Alzheimer’s and dementia patients.
Susan Thompson and her husband, Mark, are caring for his father, Gary, a 75-year-old former CFO who, three years after being diagnosed with dementia in 2011, moved into their home in Roseville, Minnesota. Given that both Susan and Mark had full-time jobs and were raising two teenagers, the addition of Gary to the household put them under a significant strain.
The Thompsons are not alone. Almost 6 million Americans are living with Alzheimer’s; as many as 14 million will be facing the disease by 2050. While it is undeniable that each of these people suffers, what too frequently goes unnoticed is the burden on the army of family caregivers backing them up.
That’s where Joe Gaugler—energetic, compassionate, and devoted to practical applications—comes in. In his role as professor and Robert L. Kane Endowed Chair in Long-Term Care and Aging in the School of Public Health, Gaugler and his team are running three major research projects on people with dementia, exploring the challenges faced by caregivers and how various technological and psychosocial supports might help them.
One of Gaugler’s first initiatives upon arriving at the U in 2005 was to establish an annual conference called Caring for a Person with Memory Loss, which attracts more than 300 everyday caregivers to a one-day symposium that provides them with information, support, and education.
For Susan Thompson, as for so many others, that conference was her introduction to Gaugler and his research. The Thompsons recently took part in one of Gaugler’s research projects, which will ultimately follow for 18 months 200 people testing a smart sensor home system. The system, built by the company GreatCall and installed and monitored by licensed vendor Lutheran Home Association, allows families to track their loved one’s motion and activity patterns via smartphone, computer, or automated telephone messaging. Known as Remote Activity Monitoring or RAM, it employs six sensors installed throughout the home—on walls, doors, beds, and toilets—to track what the person with dementia is doing when caregivers are at work or asleep.
The Thompsons were part of an initial six-month trial run, in which 132 families from throughout the country tested the system. Those early results, as the Thompsons found, were mixed. While the bed sensor helped the family monitor Gary’s sleeping and nighttime behavior, it was difficult for Susan and Mark to draw conclusions from the other data provided by the monitoring devices, since multiple people in their family were using toilets, opening and shutting doors, etc.
“With five people living here and four bathrooms,” says Susan, “it was hard to pick apart what movement was Gary’s and what was ours. I think this technology would be better for someone living on their own in the community.”
Insights like this have led Gaugler and his team to conclude that the RAM technology may work best for Alzheimer’s patients who have problems navigating their homes and for those with milder dementia. “What we and the families are hoping,” he says, “is that RAM will allow patients to live at home longer.”
Although the system didn’t work perfectly for the Thompsons, Susan says they miss the bed monitor. “I can’t ask Gary how he slept or how his night behavior is changing,” she says. “With the monitor I could see if he was up 20 times the previous night.”
Gaugler and his team are spearheading two other studies to support caregivers. The first involves regular telephone-based counseling sessions for families of dementia patients who have moved into residential care facilities. “These families feel cut off from support and sometimes feel guilty about their relatives’ living situations,” says Gaugler. His program provides families with six telephone counseling sessions in four months, plus the opportunity to call counselors over the rest of the year. Early results? “Feedback from families shows they greatly value the support.”
The second study also provides caregiver support, but in this case for those whose loved ones are in adult day services. “We speculated that if families are supported along with relatives who use day services, there could be better outcomes for everyone,” he says.
With a rapidly aging population, Gaugler’s research has gained an added sense of urgency. “We rely heavily on families for long-term care, but we can’t assume we can always do so,” Gaugler says. “We need innovative supports and services for these families so they can benefit throughout their caregiving journeys.”