Photograph by Richard A. Nichols
While Charles Baron cooked dinner, his wife, Betty, went out for a walk.
Then she forgot to come home.
For the next few hours, two firetrucks, 10 police cars and an entire neighborhood near Faust Park searched for her. She was found, unscathed, at the bottom of a window well.
Betty Baron, now deceased, suffered from Alzheimer’s disease.
“That was a lot of heartache and resources that could have been avoided,” says Lisa Baron, Betty’s daughter-in-law and the founder and executive director of Memory Care Home Solutions. Trained as a lawyer, Baron spent years as general counsel and director of development for Parc Provence, a state-of-the-art facility for people with Alzheimer’s that was built in 2004 by Charlie Deutsch (one of the owners of The Gatesworth). While planning the assisted care center, Deutsch sent Baron out with teams of specialists—social workers, architects and public relations agents—on nationwide field trips to check out already established facilities.
At the same time, Betty’s dementia worsened. “She would walk into our home, and she would no sooner be in our home than she would be back out on the street,” Baron recalls. “My daughters, then 8 and 10, would guide her back in. I saw very poignant interactions that made me want to get involved personally.”
Baron’s first step was joining a task force examining how younger people could help the elderly. Then she took caregiver classes. In January 2002, Baron gathered people she had met through the site visits to brainstorm about what they could do.
“We decided upon Memory Care Home Solutions,” she says. “The mission is to extend and improve time at home for those people caring for someone with dementia.
“The whole thing about being in the home is that therapeutically, it is such a wonderful thing for the person with dementia, because they are in the place that they are familiar with, around the things they love and that they know.”
Backed by a $75,000 grant from The Simon Foundation here, MCHS began by conducting focus groups of caregivers (from a variety of demographic backgrounds) with a loved one in adult day care. “These people knew there was a need,” Baron says. “There was no denial—which was huge.”
A year later, in 2004, the Missouri Foundation for Health awarded MCHS $650,000—funds used to create a curriculum for caregivers. Developed by Harriet Rzetelny, a social worker on the staff of New York’s Brookdale Center on Aging of Hunter College, the curriculum’s six chapters cover Alzheimer’s disease, difficult behaviors, communication, safety, caregiver stress and resources. Today MCHS employs four full-time and one half-time employee and has a budget of $486,000.
For caregivers, the program starts when they call the office and get an over-the-phone assessment. Then an MCHS staffer travels to the home to detail exactly what is going on, where the largest problems are and whether dangers lurk inside the house to tally up problems crying out for solutions. Among the first questions: What are the most challenging behaviors you have to handle?
“Sometimes they won’t know how to answer,” Baron says. “But over a two-hour visit, you are going to see that, wow, they are dealing with constant repetition. Or they are dealing with wandering.”
Within a week, the home-care staffer creates a report with recommendations and strategies to improve the environment for both the caregiver and the person with Alzheimer’s. The report also includes local resources.
“The caregiver might not know which day-care centers are out there and which ones have transportation,” Baron says. “We come back to the office and facilitate the connection. We will call up and ask if the day care has an opening, if it is appropriate, what the male-female ratio is, what the staff-to-patient ratio is, the amount of staff right now and if they have transportation to pick them up.”
The cost of the complete program for MCHS is $1,500, but as a nonprofit it charges only $150. “But if they can’t afford that, there are scholarships available,” Baron adds.
Currently the number of people living in this country with Alzheimer’s is 5.2 million—a figure expected to skyrocket to 18 million by the year 2050. That just includes those afflicted who are 65 or older. According to Kandi Woodrome, communications coordinator for the local chapter of the Alzheimer’s Association (which offers Care Consultation, a similar service), 66,000 people in the area, including southern Illinois, have Alzheimer’s. Across Missouri, the number is 110,000.
“Memory Care is filling a most important need that is unfortunately growing,” says Marylen Mann, the founder of OASIS, an organization that offers a variety of arts, education and volunteer programs for mature adults, and a member of the MCHS advisory board. “The situation is tragic, and families are often desperate. To have this kind of support and training is very important.”
Fern Heider, 84, called MCHS for help with her husband, Edwin, now 87. “They have a program to tell you what to do and how to do it,” Heider says. “They gave me their caregiver course, an evaluation of our home and a list to make it safer. For instance, they told me how to get him in and out of the bathroom with his walker. That sounds simple, but it isn’t.”
On the first site visit, the MCHS worker scours the house and then makes suggestions right down to weighted cups, wrapped-in-foam utensils and brightly colored place mats on the table. “We do a lot with contrasts,” Baron says. “Their eyesight is affected, but they can see contrast. The table should have a border so they can tell the difference from where it ends and where the floor begins. You want contrasting colors. It helps people define where the edge of the couch is so they can sit down.”
The staffer divides the house into zones: the calming zone, where the person with Alzheimer’s can sit and listen to music; the danger zones of the kitchen and bathroom (which MCHS will suggest be equipped with stove guards, heat monitors on the faucets, bath benches and cabinet locks); and even a caregiver respite zone.
“The caregiver puts up a stop sign on a door,” Baron says. “The stop sign is still recognized by many people with dementia late into the disease. Once they make sure the person is safe, they can go into that room, breathe for five minutes and regroup. You need that time.”
The MCHS employee also helps outfit the house to ensure safety. Pills are taken out of brown paper bags and carefully sorted into daily dosage pillboxes. Night lights are installed. Reflective duct tape is placed on the floor leading from the bed to the bathroom to prevent the person from getting lost. Smoke alarm batteries are checked. An alarm is installed on the bed in case the person gets up in the middle of the night and wanders off. Throw rugs are picked up and ottomans removed: “Accidents just waiting to happen,” Baron says.
Flooring is another major consideration in the home of someone suffering from Alzheimer’s. “The dark rug is often perceived by people with dementia as a hole,” Baron says. “So if you don’t want them to walk out the front door, it is good to use there. They won’t step on it for fear of falling.”
Often the problem is not wandering but unrelenting repetition. “They say they want to talk to their mother,” Baron says. “And you want to say, ‘You can’t talk to your mother. She’s been dead for 10 years.’” Instead, the preferred strategy is deflection. “You say, ‘Yes, and … let’s go for a walk.’”
Accepting their reality is another approach. “For 60 days, my mother-in-law opened walnuts and took out the walnut,” Baron recalls. “She felt really good about herself. That was OK, and that is a lot of what our program does. We teach people that there is a new normal. What the person is doing is all right; it’s not about redirecting the person into an activity that you find socially appropriate.”
Heider was having trouble getting her husband to eat anything but waffles—“not a balanced meal, I can tell you.” MCHS sent her a diet and menus including finely chopped foods. “They told me, ‘Don’t tell him it’s dinnertime or suppertime,’” she says. “They told me to go fix a meal and tell him it is time to eat. You don’t want to ever ask him ahead of time, ‘Are you ready to eat?’ because he cannot make that decision.
“One of the big things I learned from the care program is don’t tell them about tomorrow or the next day,” Heider says. “They do not know, and they will get flustered. When the time comes to go to a doctor’s appointment, that morning, I will say, ‘We are going to see the doctor today, and we are going to get ready to go.’ They cannot make decisions.”
Follow-up is key. After submitting the initial strategy plan, the MCHS assessor calls to help with implementation. Additional calls are made every three months, and another home visit is made within the year. But Heider’s staffer did much more.
“My person would come every three months to follow up on what we were doing here and also to see how I was progressing with taking care of him,” Heider says. “I could contact her at any time, and she would say, ‘Why don’t you try this?’ It was very helpful.”
Which is, of course, the whole point of MCHS. Washington University researchers are tracking the program’s results. Not only are they finding a significant reduction in caregiver stress, but also they have documented a sizable financial savings. A 2007 service impact summary based on the experiences of 70 dementia patients found a total of $84,000 saved in 911 calls, $220,500 saved in E.R. visits and $3.2 million saved in institutionalization costs.
Baron smiles with pride. “I went to law school 25 years ago,” she says. “Who knew this was where it would lead?”
The Stats on Alzheimer’s
- Currently, 5.2 million people in the United States are living with Alzheimer’s—5 million age 65 and older, 200,000 under 65 years of age.
- The number of people age 65 and over with Alzheimer’s disease is estimated to reach 7.7 million in 2030.
- By 2050 the number of individuals age 65 and over with Alzheimer’s could range from 11 million to 16 million. More than 60 percent of those people will be age 85 or older.
- Ten million baby boomers will develop Alzheimer’s.
- Alzheimer’s is the sixth leading cause of death—and the fifth leading cause of death for those age 65 or older. From 2000 to 2005, deaths attributed to Alzheimer’s rose 44 percent.
- One in six women and one in 10 men who live to be at least 55 will develop Alzheimer’s disease. The risk is higher for women than men because women live longer, on average, than men.
- The direct and indirect costs of Alzheimer’s and other dementias to Medicare, Medicaid and businesses total more than $148 billion annually and are expected to increase to $160 billion by 2010 and $189 billion by 2015.
- In 2007, 9.8 million family members, friends and neighbors in the U.S. provided unpaid care for a person with Alzheimer’s disease or another dementia. The value of that care was $89 billion, and the indirect cost to business for employees who were caregivers was $36.5 billion.
- State and federal Medicaid costs for nursing-home care for people with Alzheimer’s and other dementias totaled $21 billion in 2005; this figure is projected to increase to $24 billion in 2010 and $27 billion in 2015.
Source: 2008 Alzheimer’s Disease Facts and Figures, the Alzheimer’s Association, alz.org
Memory Care Home Solutions’ annual fundraiser and silent auction, Memories and Melodies, is set for Thursday, November 13, at Moulin. Cocktails start at 6:30; dinner at 7:30. Tickets are $100. For more information, call Jennifer Ronzio at 314-645-6247, or visit alzhomesolutions.com.
