November 3, 2003
A new book by Joanne Koenig Coste, a teacher and care-group leader for persons with Alzheimer's, offers countless practical tips for coping with and caring for a loved one with the disease. The book, called Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease, is being published this month by Houghton Mifflin.
Ms. Koenig Coste's approach grew out of her own experiences while caring for her husband, an advertising writer who developed Alzheimer's while in his 40s, shortly after the birth of their fourth child. She says that care partners must learn to view the world from the person with Alzheimer's point of view and lists five key tenets for coping with the illness.
Her advice is geared toward those in the early to middle stages of the disease, and she stresses that adaptations should begin as early as possible. Among her recommendations:
1. Make the physical environment work. People with Alzheimer's, she emphasizes, don't just suffer memory decline but physical problems with perception and the senses. Eliminating clutter and simplifying surroundings, beginning early in the course of the illness, can make a big difference, she says. For example:
- Eliminate clutter. Clean out the closets, so that the person with Alzheimer's is not overwhelmed by choices like what to wear. Lay out clothes to wear the night before -- with items to be put on first placed on top. Use simple cue cards in the kitchen to label cabinets and drawers. In the bathroom, put out a toothbrush with toothpaste on it for the morning -- and pack pill bottles and scissors safely away.
- Brighten the home. Use bright lights to eliminate shadows and dark corners. They can be frightening to the person with Alzheimer's and cause them to lash out or be aggressive. Cover mirrors if the patient feels threatened or invaded by the "stranger" who stares back.
- Use bright colors and bold contrasts. Paint the bathroom a rich color, for example, to provide an easily recognizable contrast with the white toilet. She describes how her husband would pace the oak floors of her home, avoiding the wooden chairs in the family room. Only after one of her kids placed a bright red pillow on the chair could he clearly make out the chair's outlines -- and feel that he could safely sit down.
2. Know that communication remains possible. Speak slowly and clearly, using simple sentences. Even if a person with Alzheimer's can't always understand what we're saying, she explains, they do pick up on our body language and tone of voice. A gentle look or loving hug can make a big difference as words and comprehension begin to fail.
3. Focus on remaining skills. Try to make small "victories" out of simple tasks. Allowing a loved one with Alzheimer's to fold napkins, roll out the Thanksgiving pie dough, or dry the dishes can give them a sense of accomplishment, even if it takes them hours to complete the chore.
4. Live in the patient's world. Reasoning with the patient or challenging what they say can just lead to frustration and make them sad, says Koenig Coste. If they are sitting on the couch reading a book that's upside down, for example, don't run over and turn it right side up. Don't pepper them with questions like, "You remember what we had for dinner, don't you?"
5. Enrich the patient's life. Offer praise whenever possible, and most important, try to keep your sense of humor.
These five key elements, she says, allowed her, her husband and their family to make the most of a very difficult situation. Many more practical tips are included in her book. It is an excellent and useful guide for anyone coping with the stress of caring for a loved one with Alzheimer's, and a boon to caregivers and persons with the illness alike.
By Toby Bilanow, Medical Writer for www.ALZinfo.org , The Alzheimer's Information Site. Reviewed by William J. Netzer, Ph.D., Fisher Center for Alzheimer's Research Foundation at The Rockefeller University.