Shortly after Charles Luman reluctantly placed his wife, Libby, in an assisted-living home, a friend at a weekly breakfast looked closely at him and said, “Chuck, you look a lot better.”
“Heck, I didn’t think I looked so bad,” Luman, 79, of Roseville, recalled later. “But maybe that’s what happens when you take care of somebody with Alzheimer’s. You kind of slowly wear down without realizing it.”
The swelling tide of people with dementia and caregivers like Luman—both growing as the population ages—is why 32 groups of volunteers in Minnesota have embarked on programs to help make their communities “dementia friendly.”
The City of Roseville is among them. About 20 residents, care providers, city officials, parish nurses and groups such as the Como Park/Falcon Heights Living at Home Block Nurse Program and Lyngblomsten are working on a project called Roseville Act on Alzheimer’s. It is part of a statewide collaborative working to improve life for those with Alzheimer’s and to help their families and community businesses, churches and other groups be more effective.
A community forum to address those issues will be held from 2:30 to 4:30 p.m. on Tuesday, Oct. 21, at Fairview Community Center, 1910 County Road B W.
Years ago, dementia—most common among older people—was rare simply because people died much younger. By 2000, about 88,000 Minnesotans had Alzheimer’s and similar dementia diseases. Now the number is about 95,000 and will reach 110,000 by the year 2025, officials estimate.
It affects about one in nine people 65 and older—nearly one in three 85 and older. Alzheimer’s accounts for about 70 percent of dementia diseases.
There is no cure, although medications can slow its progress for a time in about half of patients. Damage to brain cells slowly disrupts a person’s memory, judgment and personality. Ultimately it leads to death, although most patients die earlier of something else.
In Roseville, nearly 750 people have dementia. Most live at home and about 110 live alone. Roseville has one of the higher percentages in the state of people age 65 and older (20.2 percent). By contrast, Minnesotans age 65 and older make up 12.9 percent of the population. Roseville also has a higher rate of dementia than in many Minnesota communities (10-13 percent).
At the community meeting Oct. 21, residents and others with ties to Roseville will hear about its strengths and gaps in meeting the needs of people with dementia. They’ll also learn results of a recent survey of residents and businesses that found strong support for improving knowledge about the signs of dementia, the skills to interact with people with dementia and the ability to make referrals.
Then they will help select priorities for future action, such as developing a list of community resources or training neighbors, businesses and clergy to better understand and help people with dementia.
“There are lots of really smart ideas for how to improve things,” said Kitty Gogins, coordinator of the Roseville project, at a recent meeting of her team. “People at the community meeting will help us find the most effective and doable ideas with the biggest impact.”
The Roseville Act on Alzheimer’s project was launched by the Roseville Alzheimer’s and Dementia Community Action Team. That volunteer group, started last year, also has sponsored memory screening clinics and community forums on legal and other issues for families dealing with dementia.
The statewide effort began in 2009 after the Legislature asked the Board on Aging to study how the state should prepare for rising numbers of people with dementia.
That led in 2011 to the Act on Alzheimer’s collaborative of 50 state organizations, including all major health plans, medical and hospital associations, Mayo Clinic and AARP. Among the collaborative’s activities, it has approved modest grants to help Roseville, the City of St. Paul and other communities develop individualized action plans.
Minnesota often is cited as a trailblazer in both assessing state and community needs and then—unusual among the states—taking action. Leaders of the Act on Alzheimer’s group and the Minnesota Department of Human Services frequently explain the Minnesota approach at national conferences.
For those in the caregiving trenches, the work never ends—even when a loved one enters a nursing home or assisted-living facility.
“It’s really hard to watch as Libby changes,” Luman said. “It’s like the person you love is slowly disappearing, and you can’t do much about it.”
He still teaches a course in business operations management at Metro State University after years as an engineer, business executive and early developer of computer systems. He remembers the family meeting where his two daughters told him it was time for their mom to move to assisted living so paid professionals could take over her care.
“They were right, but it wasn’t easy to let go,” Luman said.
By that time, about five years after her diagnosis, he employed two aides to come morning and evening to help dress, bathe and feed his wife. She had attended adult day care for about five hours several times a week. That gave him a break from the daily stress, but eventually the disease progressed and she no longer could participate.
“My caregiver support group at the Roseville Community Center told me that 40 percent of caregivers die before the person they’re caring for,” he said. “That’s kind of shocking, but it shows how important it is to take care of yourself, and how important community support can be.”
He visits Libby about every other day. And while the stress is less, it’s still there.
“I think sometimes Libby still knows who I am,” Luman said during a recent visit. “But she hardly says anything anymore, sometimes a word or two. She lives pretty much inside herself now.”
So it’s even more essential that Luman help the assisted-living staff know the vibrant woman he married in 1960—the woman who raised three kids, coached neighborhood girls’ softball, played cutthroat croquet and joined friends on antiquing forays into Wisconsin.
“This Roseville project, that could help more people be comfortable with people like Libby,” he said.
“Sometimes it’s hard for friends to remember that Libby is still Libby. You have to remember that.”
Warren Wolfe of Roseville retired last year from the Star Tribune, where he wrote about aging issues for 21 years. He and his wife, Sheryl Fairbanks, helped care for their four parents, two with dementia. They also are active in the Roseville Act on Alzheimer’s project. For more about the Act on Alzheimer’s project, go to the Roseville city website www.ci.roseville.mn.us and search for Alzheimer’s.
This article was supported by the MetLife Foundation Journalists in Aging Fellowships, a program of New America Media and the Gerontological Society of America.