All in the family: Helping to care for caregivers

It's a daunting task that many families enter with love and good intentions, but often without the skills they need.

"Caring for parents with dementia can become almost overwhelming -- it's so important, and so difficult, with so many conflicting demands," is how Minnesota researcher Joe Gaugler describes that journey. "And it's so much a part of what it means to be family."

On Saturday, about 300 caregivers will gather at the University of Minnesota for a free, all-day conference on lessons that Gaugler is learning from the day-to-day struggles of 100 Minnesotans caring for parents with memory loss.

Gaugler, who teaches at the university's School of Nursing, is directing a federally financed $1.2 million research project studying those 100 caregivers, split between a study group and control group, to see what techniques work best.

If Gaugler is right, his combination of education, support groups and counseling on demand will result in healthier caregivers who make better decisions with less stress. The 50 study-group families, using Gaugler's techniques, might save $4 million by delaying nursing home placements an average of 1.5 years.

To cope, caregivers need to craft a plan to provide care as needs change, then expand the circle of family, friends and even paid help to ensure that the burden doesn't crush anyone, he said.

Gaugler's project is based on 20 years of research with caregiver spouses at New York University, a research partner in his current study.

Two years ago, the Minnesota Board on Aging received $1.5 million in federal grants to offer that New York program to 250 caregiving spouses. It already has been so effective that the state won the prestigious 2008 Rosalynn Carter Leadership in Caregiving Award.

"It's really helped our family prepare for what's coming, to really develop a plan so we know what we'll do," said Terri Molan of Columbia Heights, who with four siblings is helping their mom care for their 78-year-old father with Alzheimer's disease. Her mother joined the program late last year.

"We all get along pretty well -- that's not true in all families -- but we've learned how to divide up the tasks and how to give mom a break," she said. "Now we're scouting out assisted living places so we'll be ready just in case."

Every family is different

Gaugler expects that sort of strategizing will show up when children are the primary caregivers as well as when they back up a caregiver parent.

"Every family is different, but stresses are almost always present," Gaugler said. "We know this kind of intervention works well for caregiver spouses. I think it also will work for adult children."

The answer is critical, because adult children form about half of the 175,000 caregivers who tend an estimated 100,000 Minnesotans with dementia.

"Adult children have different family pressures than spouses," he said. "My bet is we'll find some strategies work better with adult children.

While Gaugler won't answer the research questions until the end of next year, when his five-year project funded by the National Institute on Aging ends, "we're getting some clues about what works, and about what caregivers need."

His research led to a conference for caregivers a year ago, then another six months ago, and the third on Saturday.

Whether eased slowly into caregiving or jerked into it by a crisis, "very few caregivers are prepared, know where to get help or even are sure they want help," Gaugler said.

That's where coaching and support groups help, he said. "Sometimes you need to talk things out with people who know what you're going through.

"Anecdotally, we're getting very good signs of success," he said. "I think we're getting better at making the caregiver experience a healthier one."

Warren Wolfe • 612-673-7253

If you go

What: Caring for a Parent with Memory Loss: Practical Tips and Strategies.

Where: University of Minnesota, Room 2-650 Moos Tower, 515 SE. Delaware St., Minneapolis.

When: Saturday, 7:45 a.m. to 5 p.m.

Cost: Free, including continental breakfast and lunch.

Topics: Legal and financial issues; drugs that work; treating depression and pain; Medicare and Medicaid, bathing and other issues.

Parking: Washington Avenue Ramp, 1926 University Av. SE. (About $10).

Reservations: Call organizer Joseph Gaugler  612-626-2485  or e-mail gaug0015@umn.edu .

To contact the state caregiver program for spouses: Call Annette Peterson at the Minnesota Alzheimer’s Association, 952-857-0523 or annette.peterson@alz.org.