Empathy's on tap in 'dementia-friendly' community

September 1, 2014


No mother wants to see her child struggle, regardless of the child's age. So it's understandable that Janet Rubenzer–Pike gets choked up and emotional when she talks about her 55-year-old daughter, Julie Anderl, of Chippewa Falls, a northwest Wisconsin community of 14,000. A one-time successful lawyer in private practice, Anderl had also been a city attorney, president of the Chamber of Commerce, county court commissioner and circuit court judge candidate.

About three years ago, Anderl was diagnosed with frontotemporal dementia, a degenerative brain disorder that affects her memory and cognition. She has since had to stop practicing law, give up her driver's license and rely on family and friends to help her with such mundane tasks as grocery shopping and making change.

"Sometimes it takes Julie a long time to come up with what she wants to order or express what she wants," explains Rubenzer–Pike, who lives minutes away from Anderl and her family. "She has trouble counting out money — numbers tend to confuse her."

Dementia-friendly business
Tracy Heidtke, co-owner of 4:30 AM Coffee House, puts a purple cling on the front door of her business to advertise that it takes special care in serving customers with dementia.

When they would go to larger cities to shop, Rubenzer–Pike noticed how employees would push merchandise on her daughter and encourage her to sign up for a credit card when it was clear she was confused. "She'd call out to me, 'Mom, what's my phone number?' and I would know something was up," Rubenzer–Pike says.

"It's been hard to watch someone who was so brilliant decline," she continues. "For someone who was as independent as Julie, she now has a lot of difficulty judging space and time. If I tell her I'll pick her up at 1 and it's 10 in the morning, she may sit by the door for the three hours waiting."

Positive reinforcement
Rubenzer–Pike remembered reading an article about another city in Wisconsin where employees were trained to recognize customers with dementia and better assist them and their caregivers. She thought: Why not do the same in Chippewa Falls?

So last spring, she reached out to a number of local organizations, including the city's downtown business association, the area's Aging & Disability Resource Center and the county's Alzheimer's Association to enlist their help in making Chippewa Falls a "dementia friendly" community. These communities are spreading in Europe, especially in the United Kingdom, but they are just beginning to take shape in the United States.

Teri Ouimette, who heads Chippewa Falls Main Street, an association of about 50 to 60 downtown businesses, embraced the idea. She sent an email to business owners asking if they would be interested in being trained, along with their employees, to better serve customers who may have a form of dementia.

"The response was quick and overwhelming," says Ouimette. "Within 24 hours, 100 percent of the downtown businesses said, 'Yes, this is beautiful. Put us down. We're in.' Everyone stepped up."

Rapid response
Rubenzer–Pike also contacted St. Joseph's Hospital, where she is a member of its Partners of St. Joseph's Hospital, the fundraising arm of its auxiliary, to enlist the hospital's help. Joan Coffman, president and chief executive of St. Joseph's Hospital, says the initiative perfectly matches the mission of the 193-bed Catholic hospital, part of the Springfield, Ill.-based Hospital Sisters Health System.
Dementia Friendly Community
From left to right: Brenda Sawyer, co-owner of 4:30 AM Coffee House; Janet Rubenzer-Pike and her daughter Julie Anderl; and Tracy Heidtke, co-owner of 4:30 AM Coffee House, mingle at the July kickoff event where Chippewa Falls, Wis., declares its intention to become a “dementia friendly” community. Rubenzer-Pike was inspired by her daughter’s struggles to start the initiative.

"When you think about the mission of Hospital Sisters a few things come to mind, including respect and compassion for all people, regardless of where they are on their journey," says Coffman. "Our sisters have also taught us the importance and value of grassroots health advocacy and community engagement. I think that is what has knocked my socks off about this — the way our community heard the message and embraced it within 24 hours. They want to make sure they respect every patron who comes into their facility and make them feel appreciated and valued."

Coffman gave approval to the hospital's marketing team to produce calling cards for caregivers, or anyone helping a person with dementia, to hand out to service employees. The cards explain that the person the caregiver is assisting has "Alzheimer's or dementia and that he or she might say or do things that are unexpected." The cards are available free of charge at several locations throughout Chippewa Falls, including most downtown businesses and St. Joseph's Hospital.

In addition, the marketing team designed purple angel decals for businesses to affix to their front windows, designating them as dementia friendly.

"Everything was printed and produced in-house so it cost virtually nothing to do this, maybe a few hundred dollars," says Coffman, adding that St. Joseph's Hospital is happy to serve as a resource for other health systems interested in duplicating the effort.

Meaningful contact
At the same time Rubenzer-Pike was mounting her effort in Chippewa Falls, various health care providers in Chippewa County had formed a coalition to better serve individuals with dementia and their families. According to the U.S. Census Bureau, 13 percent of people over the age of 65 are at risk for developing some form of dementia.

"That number is rapidly increasing when you compare those who are 65 now to those who are going to be over 65 five or 10 years from now," says Jessica Barrickman, manager at Aging & Disability Resource Center of Chippewa County, which includes Chippewa Falls. "Demographically, in northern Wisconsin, our population tends to be much older, and that segment is rapidly growing, so it becomes even more challenging."

Barrickman says creating dementia friendly businesses was one initiative the coalition was considering. When members heard about Rubenzer-Pike's efforts, they decided to all join forces.

Barrickman, along with Julene Bowe at the county's Alzhemier's Association, coordinated a training team, mostly of volunteers, who now spend 20 to 30 minutes at each Chippewa Falls business explaining ways to identify someone with dementia and providing tips on how to best serve them.

The trainers explain that customers with dementia may struggle with words to explain what they want, use the wrong words and fumble with money to pay.

"The worst thing an employee can do is clam up and not say anything — folks with dementia are very aware when they are being ignored," Barrickman says. "It's important to have a friendly smile, make eye contact and if they are confused, reword directions so that they are clearer."

Cream and sugar
Tracy Heidtke and Brenda Sawyer co-own 4:30 AM Coffee House, which was the first Chippewa Falls business to undergo training in July. Anderl had been a regular customer for more than 12 years when Heidtke and Sawyer began to notice she was having trouble counting out money to pay for her drink.

"We know Julie well so we asked if it would be OK for us to help her with her money," says Heidtke, adding that she found the training helpful because it offered tangible signs to help spot someone with dementia.

"Mostly it comes down to taking a little extra care and being nice," Heidtke says. "Some of (the training) was simple common sense, but the bottom line is to be patient, compassionate and treat all customers with respect."

Barrickman says the coalition's goal is to expand training in the next year or two to all businesses in Chippewa County, which has a population of 62,000.

Meanwhile, Rubenzer-Pike says she and Anderl couldn't be prouder of their community.

"I am truly ecstatic," says Rubenzer-Pike. "There is so little you can do for people in this situation. Yes, you can be with them, but making them feel like they are like everyone else and treated with care and respect is beyond wonderful.

"So often people with dementia don't want to go to stores because they are embarrassed. What we have instituted in Chippewa Falls is a real game changer."


Copyright © 2014 by the Catholic Health Association of the United States
For reprint permission, contact Betty Crosby or call (314) 253-3477.


Copyright © 2014 by the Catholic Health Association of the United States

For reprint permission, contact Betty Crosby or call (314) 253-3490.