Victims of Alzheimer’s disease walk among us.

Monday, June 25, 2001

Victims of Alzheimer’s disease walk among us.

They are loved ones. Husbands or wives, parents and grandparents.

"They look so normal," people say.

Alzheimer’s disease accounts for over half of all dementia. An estimated five percent of people over age 65 have a severe form of the disease and 12 percent suffer from mild to moderate dementia.

Because it is a primary progressive dementia, the prognosis for people with this disease is poor.

Some victims are well-known. In Austin, a popular minister of an east side church became confused and got lost. A public official, also dealt courageously and openly with his dementia until he decided he could no longer serve in the public spotlight.

Most are invisible to the public. They are the spouses, who remain at home, where their loved ones first noticed the almost imperceptible changes such as forgetfulness, recent memory loss, difficulty learning and remembering new information, deterioration in personal hygiene and appearance and an inability to concentrate.

Maybe, personality changes, such as restlessness or irritability took over.

Nocturnal awakening became a constant in their lives.

Whether or not the changes are subtle, they are irreversible. Alzheimer’s disease victims are also prisoners and so are the loved ones who care for them. As the disease worsens, the demands placed upon loved ones grow.

For the last 10 years, Sacred Heart Care Center has recognized this and opened its doors to its Adult Day Program II.

Kim Gunderson is a native of Austin. She and her husband, Eric, who works for City Concrete, have three children, Jason, 22, Greg, 19 and Josh, 12.

An Austin High School graduate, Gunderson also completed the licensed practical nurse program at then-Austin Community College. For the last 15 years, she has worked with Alzheimers victims. Ten years ago, she started the program at Sacred Heart Care Center in Austin.

A successful day program was already in place, but people with dementia posed different challenges than the regular program clients.

Sacred Heart’s management agreed to turn a multi-purpose room, kitchen and crafts areas into a secured area for victims of dementia.

A fenced yard was added to allow participants to enjoy the outdoors.

The main area was decorated with an aviary, aquarium and other fixtures of home.

Four people came in the beginning and through a decade, the program’s numbers have fluctuated to the licensed maximum of 16.

Good Samaritan at Albert Lea has a dementia specific unit and another nursing home at Rochester also has one.

"We often see families wait so long before seeking this kind of help," said Gunderson. "It’s only natural, I suppose, because it’s their loved ones they care about, but it’s something they should consider for their own sakes as well as their loved ones’ and act sooner rather than later."

A Sacred Heart bus goes to the residences to collect the program’s clients. Once inside the confines of the program’s headquarters in southwest Austin, a full schedule of activities, most intended to increase mental stimulation, is implemented by Gunderson and her staff.

"First and foremost," Gunderson said, "the focus is to give respite care to the family care givers. It’s a very intense situation. When you have someone, who can’t be allowed to function by themselves inside the house or out, who may wake up in the middle of the night and start functioning as if it were day. They are going to make life tough on you. You need the rest, the respite to be able to cope."

The program also offers personal care assistance, such as a bath or shower, but mainly the activities are designed to offer mental stimulation.

Clients attend on the average of three to five times a week and grow attached to the staff. "We become part of their family. Routine is important to them and they see us so often that they come to trust us immediately. Nobody knows my name, but they know I am somebody they can come to, someone they can trust," said Gunderson, Adult Day Program II supervisor at Sacred Heart Care Center in Austin.

Both Sacred Heart’s program and Gunderson’s work with a family care givers’ support group have earned recent attention and praise.

Sacred Heart offers free transportation services to clients within a five mile radius of Austin, but clients have been brought to the program by relatives who live at Osage, Iowa, and Albert Lea.

Some insurance providers cover the program’s treatment, but mostly it is a private pay arrangement or funded by alternative care grants from the state of Minnesota as well as some Veterans Administration contracts.

It costs $45 a day.

That’s six hours of respite, including a main meal for the client, the personal care, specially designed activities and always the supervision of trained staffers, Emily Anker, Corrine Scott, Barb Lewis and Mary Kline, which helps maintained the one staff to four client ratio sought by Sacred Heart.

Joan Franklin, Sacred Heart’s community health services director, says Gunderson and her staff are able to "make people feel comfortable who come here." Franklin said, Gunderson is able to "convey the message that she cares about them."

Currently, Sacred Heart has clients ranging in age from 56 to their nineties. While the unit is open to family care providers and their attention is welcome, if the purpose of the program is, in part, to give them some respite, it would defeat that purpose if they attended the program with loved ones.

Those who do visit will see the program supervisor Gunderson and her staff redirecting skills constantly. "Our clients may have shown signs of forgetting to pay bills or paying bills twice," Gunderson said. "They will show forgetfulness and they may call relatives frequently not knowing what they are doing."

"They may turn on the stove at home and leave it. They may stop eating. Whatever it is, there is a pattern. They eat too much or they don’t eat at all. They gain weight or they lose it. They go someplace and they can’t remember how to get home," she said.

"Also, their cleanliness may suffer and there will be changes in their personal hygiene habits," she said.

"Whatever it is, we have to deal with that in the Adult Day Program. That’s why we are constantly, and I mean constantly, redirecting skills. Repeating ourselves to be heard and understood. It’s very frustrating, but it’s necessary. That’s all we can do," she said, pausing to add, "The toughest part of this job is there is so much behavior management that has to happen all the time."

Relationships develop between the clients and staff. Clients share stories and confide in the staffers.

For all the repetition, Gunderson said, no two clients are alike. "They are each unique individuals. No two are the same. We take it one step, one task at a time and try to keep it simple for them."

Franklin said Gunderson works with physicians and family care givers on the behavior management efforts used at Sacred Heart.

In winning the Alzheimer’s Support Group Association of Minnesota’s top award for her work, Gunderson’s efforts have been validated.

The group meets the first Monday of each month and brings family care givers together to share their own frustrations and develop new strategies.

Gunderson delights in telling about the genobics or physical exercises she recruits the clients to do.

She is a firm believer in the need for early stage intervention when the symptoms of dementia are noticed and for immediately involving family care givers in dealing with what will only get worse.

After 10 years of existence, the Sacred Heart programming for dementia victims remains much like it was in the beginning.

The philosophy of "keeping it simple" prevails; just like the vise-grip that organic brain syndrome holds its victims.

Gunderson and her staff can only offer reality orientation, emotional support for the patient and their family and a safe environment.

Of the latter, the Sacred Heart program goes the Nth degree in offering the personal touch. When a dementia client shows agitation or aggressiveness, staff will suggest the patient simply lie down and relax. "It works," said Gunderson, "They develop a bond with each of us. They develop a trust and they feel comfortable around us. So, when somebody shows agitation, we will ask them to lie down and offer them even more of that comfort and security."

Franklin observed that, like others in the nursing home industry, Gunderson and her staff can take satisfaction in knowing they have helped improve somebody’s life and helped a family to understand what has happened to a loved one.

Celebrating10 years of successful programming and now an award as the program supervisor, Gunderson basks in a brief 15 minutes of fame and a brief quiet interlude before the frustrating realities of helping those with Alzheimer’s disease return.

Gunderson preaches remaining detached, but doesn’t always practice it.

"I love each and every one of them. A piece of me dies inside whenever one of them grows progressively worse and dies. I try not to be attached to them, but it’s impossible," she said.

Call Lee Bonorden at 434-2232 or e-mail him at lee.bonorden@austindailyherald.com.