Roseville part of study on creating ‘dementia-friendly’ communities

Charles Luman visits his wife, Libby, several times a week at a nursing home in Maplewood. Luman holds the couple's wedding photo on a recent visit. (Photo by Kristal Leebrick)

Charles Luman visits his wife, Libby, several times a week at a nursing home in Maplewood. Luman holds the couple’s wedding photo on a recent visit. (Photo by Kristal Leebrick)

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.

    3 Responses

    1. Sharon Mandel

      Dear Anne, Susan, and Mr. Luman,I must say, Libby is so blessed to have the 3 of you! All of your smiles are genuine in the photos you’ve posted on FB, and Anne, dear childhood friend, yours is so bright!! I believe there is no way that your tremendous strength and embracing of joy and humor does not have a positive effect on Libby!!
      Mr. Luman, honestly, in the photo attached to this article you look JUST as you did nealy 30 years ago when Anne and I graduated from High School! Bravo, and all power and blessings to you all and Charles, too!

    2. Susan (Luman) Bright

      Great article of Mom and Dad! The more awareness people have of Alzheimer’s, the better. You never truly understand it though until you are going through it.
      We started noticing changes in Mom all the way back to 2001. It is still hard to visit Mom and Dad’s house without Mom there. It is still hard to see Mom but to not be able to talk to her. To hear her kind words, her chuckle, to feel her hugs – I’d give anything for that again. What we have learned through the times of attending the annual Dementia Conference, to attend the annual Walk to End Alzheimer’s (go team Libby’s Legacy), you need to find the joy in the moments. When Mom smiles, when Mom has a twinkle in her eye, when you can tell that Mom remembers you – boy, those are terrific joys!
      In all of our growing up and adult years, I would have never guessed this would happen with Mom. Mom was such a strong woman – she’d beat me in arm wrestling. She loved Trivial Pursuit and crosswords. What happened? What is the cause? Will I get it too? There was no planning for it, no asking Mom questions, nothing. Slowly over time it happened.
      I cherish that this continues to bring us together as a family, I cherish that while Mom is not “Mom” anymore, she is still with us. You can only hope that Mom does not feel the pain or heartache of the disease.
      Love you Mom and Dad! Thank you for this article – and continuing to bring this disease to the forefront.

    3. Anne McMahon

      Thank you for running this article to help create awareness for this devastating disease. It is one that still goes somewhat unnoticed, yet it needs so much more attention. Cudo’s to Roseville, my hometown, for starting up a so much needed project. Blessings to you all.
      Libby is my mother. I am one of the daughters that told dad it was time for assisted living. People understand that this disease is devastating, but what is sometimes forgotten is how hard this is on the entire family. Dad was tired. You could tell in every way about him. Now that we as a family made this decision, we know mom is well taken care of and we don’t have to worry about dad anymore.
      That was the part that was more stressful to me. Worrying about my father taking care of her. So nice to see him active again, doing the things he enjoys.

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