Learning to Speak Alzheimer's

A Groundbreaking Approach for Everyone Dealing with the Disease

Joanne Koenig Coste

• Publisher: Mariner Books
• Year: 2004
• ISBN:
  9780547526829
• Topic: Medicine
• Subtopic: Diseases & Allergies

A guide to more successful communication for the millions of Americans caring for someone with dementia: “Offers a fresh approach and hope. ”—NPR
 
Revolutionizing the way we perceive and live with Alzheimer’s, Joanne Koenig Coste offers a practical approach to the emotional well-being of both patients and caregivers that emphasizes relating to patients in their own reality. Her accessible and comprehensive method, which she calls habilitation, works to enhance communication between care partners and patients and has proven successful with thousands of people living with dementia. Learning to Speak Alzheimer’s also offers hundreds of practical tips, including how to:
 
· cope with the diagnosis and adjust to the disease’s progression
· help the patient talk about the illness
· face the issue of driving
· make meals and bath times as pleasant as possible
· adjust room design for the patient’s comfort
· deal with wandering, paranoia, and aggression
 
“A fine addition to Alzheimer's and caregiving collections.”— Library Journal (starred review)
 
“Promises to transform not only the lives of patients but those of care providers…This book is a gift.”—Sue Levkoff, coauthor of Aging Well

6

Tenet #1: Make the Physical Environment Work

Sometimes, something is familiar to me.

Most times there is no recognition

of the fabric of my life.

Only frayed remnants of who I once was.

THE NEXT FIVE CHAPTERS discuss the five tenets of habilitation in detail and in the order that will allow a habilitator to make use of them most easily. To work properly, however, the tenets must be applied all together; the difficult part is often learning how to apply them in a particular situation.

This chapter focuses on the physical world around the person with Alzheimer’s and gives specific suggestions for altering the environment to improve the quality of life for both patient and care partner. To begin with, pay close attention to what the memory-impaired person sees, hears, smells, and touches in a world that is becoming increasingly less familiar. These clues will help you adapt the environment to maintain a certain level of self-care, create chances for feeling successful, and minimize distress.

Although none of us lives in the world that the Alzheimer’s patient now inhabits, we can try to understand how the disease may be affecting him. Imagine these difficult experiences:

• Looking at a staircase and seeing a wall.
• Gazing into a mirror to find what seems to be someone else staring back at you.
• Having someone tell you to sit down when you cannot find a chair.
• Hearing many sounds—television, voices, traffic—that others don’t hear.
• Feeling keys in your pocket but not knowing what they are.
• Smelling the odor of mothballs in your grandmother’s attic—but where is the attic and where is Granny?

Next, consider the feeling of having many senses bombarded at once and having ever greater difficulty separating today from yesterday. Doesn’t it feel frustrating and scary? Remember these emotions whenever you interact with the patient. Even in the earliest stage of the disease, she may have some of these feelings. Try to see, feel, hear, taste, and touch as she is—and always remember that no matter how well she is performing, the disease is affecting her perspective, so it is different from your perception.

Next consider how the person’s surroundings may affect the changes in perception. You can and should alter the environment so that it helps prevent problems for the patient. The overarching idea is to make the surroundings as simple as possible.

Lighting

Start by thinking through how lighting can help control behavior, increase safety, and offer comfort and a feeling of security to the patient. The goal of lighting is to mimic daylight, which is the most comfortable kind of light for patients. Many distributors now offer bulbs under such names as “day glow,” “vita lite,” or “pink light.” You can also make a fluorescent ceiling fixture feel more like natural light by replacing the cover with a parabolic grid, which resembles rows of two-inch plastic cubes. The grid diffuses light and eliminates shadows. Focused-task lamps should be used only on a desk or a table where the patient works. Having a number of lamps on creates too many shadows, which an Alzheimer’s patient may misinterpret or find threatening.

It may seem impractical to leave lights on at night, but accidental toileting problems are not practical either. Nighttime incontinence may just be the result of not being able to find the bathroom quickly enough. At most hardware stores you can purchase a roll of sticky-backed reflector tape, which you can run from bedside to bathroom to mark this most important path, illuminating it with several nightlights. Even better, 3M produces a reflector tape that needs little or no light; it is pricey but worth the cost.

Install dimmer switches throughout the house and turn up the lights as the sun starts to go down to help the patient who may become influenced by “sundown syndrome.” Often a patient’s aberrant behavior begins to surface at that time of day and may continue for several hours. “Sundowning” generally occurs between three o’clock in the afternoon and eight in the evening, depending on the season.

As part of the effort to simplify the environment as much as possible, try to replace floor lamps with lighting that is attached to the wall. That will help make the house as clutter-free as possible.

Color Schemes

You can also help an Alzheimer’s patient by choosing indoor and outdoor color schemes carefully. Researcher Dr. Alice Cronin-Golomb, in the psychology department at Boston University, has found that the disease affects patients’ reactions to colors. Sandra Harris, who specializes in interior design for Alzheimer’s patients, has found that using unique colors for different areas and spaces can help keep the patient oriented in her home and can enable her to travel from one room to another without getting lost. Flat rather than high-gloss paint on walls helps eliminate both glare and shadows.

Try to find wall colors that contrast with the functional objects in a room. For instance, if the furniture in a room is light-colored wood, you may want to paint the walls deep aqua or a warm peach; if the room has dark, varnished wood furniture, then light-colored walls will provide a good contrast. Bright colors can help balance failing perception of depth and contrast. You may be able to help a patient’s orientation by putting colorful cushions on dining chairs, choosing frames in primary colors for her favorite photos, and placing lively place mats under table lamps. The use of colors for definition and contrast will allow the patient to continue using household objects, such as cooking utensils, hobby materials, and small pieces of furniture, for much longer.

Paint the wall behind the toilet a darker, contrasting color so it’s easy to spot from the bathroom doorway. If sofas and chairs blend with the background, use colorful throws or afghans to draw attention to where the patient should sit—his altered perception may make it difficult to decide.

Color can be used not only to highlight utilitarian items but also to camouflage objects to avoid. To keep a patient out of harm’s way, you can place a black mat inside the front door to suggest a dark chasm that can’t be crossed. Many fine long-term-care facilities specializing in the care of Alzheimer’s patients have found this to be a great way to keep their residents from wandering off. Staff members report that the most positive aspect of using black mats is not having to issue negative commands. When the Alzheimer’s resident sees the “hole,” he simply turns back in the other direction.

Along the same lines, painting or wallpapering entry doors to match the surrounding walls makes them harder to see. Place functioning locks, and even doorknobs, up high or down low on doors, leaving the useless locks and knobs in place; the person will often believe that the nonfunctioning lock or knob is broken or stuck and will not see (or look for) the newly installed hardware.

If the patient’s bedroom is kept simple, with only a splash of color on the bed to draw her attention, she will tend to use the room only for sleeping at night and dressing rather than for napping during the day.

Consider the following scenario:

Where’s my underwear, Wanda?” Burt hollered.

“On the bed, where I always put it. Look on the bed.”

Burt tore the bed apart. “It’s not here! Where is it? I’m stark naked.”

Wanda came into the room. “Look, it’s right where I put it. Here on the pillow.”

Wanda had made the mistake of placing the white briefs on a white pillow, making it very difficult for Burt to see them. Had she laid Burt’s white briefs on top of the navy bedspread, he would easily have spotted his underwear on the contrasting visual field.

By and large, stick to a palette of solid, strong, simple colors. If you are able to visit a paint store and look at paint sample cards, the middle section, working toward the darker end, will include the shades that enable patients to function best. For Alzheimer’s patients, the lighter shades seem to blend together, making it difficult to differentiate a chair from the wall behind it, or the sofa from the floor. Checks, stripes of contrasting colors such as black and white, and polka dots create visual confusion and should be avoided. Simple geometric or repeat designs, plaids, and florals are more welcoming.

Flooring

Next consider flooring. At some point, a patient’s gait will become shuffling and perhaps scissorslike. Many patients have a history of falls, and frequently the floor covering is to blame for such mishaps. Care partners should adapt the floor surfaces to accommodate the afflicted person’s needs. Before altering the flooring, however, start by checking his footwear—especially if he walks with a “shuffling” gait.

You will probably want to continue to use whatever flooring you already have. But if a room has tile floors, for instance, do not spend time trying to get the perfect shine; cleanliness with a dull finish is fine. Shininess or glare tends to create an illusion of water, ice, or other fear-provoking mirages. Wall-to-wall carpeting, without scatter or area rugs, offers a uniform, secure walking surface, but spills and maintenance may present a problem.

Light-colored carpeting is best, since it tends to make a space seem larger and less confining. Since scatter or area rugs often cause accidents, eliminating them is a good idea for safety. Always be mindful, too, of shadows that may be created on flooring, and adjust window coverings or lights to eliminate the sometimes terrifying visual illusions that can form in the perception of a person with Alzheimer’s. For safety’s sake, repair or level uneven flooring.

If you have the opportunity to choose new flooring, the ideal surface is a simulated hardwood floor (it can be found in most large home improvement centers), because it is reminiscent of older homes and is easy to care for. It is the first choice of interior designers and architects who build facilities for memory-impaired people.

Interior Pathways

Establishing clear interior pathways will help the person with Alzheimer’s negotiate spaces safely. He will also feel a sense of accomplishment at being able to find important places—the bathroom, kitchen, or even a favorite chair—more easily.

Consider placing a colorful wallpaper border at waist height along the walls in the rooms where the patient will be spending time. Unsafe entries and exits can be camouflaged by continuing the border across doors and on the surrounding walls. To someone with failing perception, the doors then seem to be just part of the walls.

In a care facility, scenes or designs can be painted on doors to help deceive the residents while ensuring their safety. Bright thematic borders, such as cactus and tumbleweed for Texas, cornfields for Oklahoma, and so forth, can direct residents to activity rooms, while colorful arrows can show the way to the bathroom. An awning hangs over the entrance to the dining room in one of my favorite facilities.

Furniture and Hangings

Remove furniture that is difficult to get into and out of. As the person’s motor skills diminish, balance becomes more tenuous. She will require sturdy chairs with arms to push up from and seats with short depth from front to back. Large, overstuffed furniture can prove difficult for the person with Alzheimer’s. A glider is a wonderful addition at this time, both for comfort and for recalling memories of rocking chairs. Unlike rocking chairs, which can be quite hazardous, gliders do not actually lift off the floor—just the seat slides to and fro, providing safe hours of enjoyable rocking. Also, recognize that to someone with changed senses, large pieces of furniture that wobble or move when touched, even if safe, may appear ready to topple. Built-in shelves are always safer and less threatening than freestanding units, and they help to keep areas clutter-free and simplified, thus increasing safety and reducing the sense of being threatened.

Simplicity is the watchword for any item that hangs on a wall. For instance, at some point in the middle stage of the disease, mirrors do more harm than good. A glance in the mirror may make the Alzheimer’s person believe that another person is in the room—someone who has not been invited, an intruder, someone who is there to do harm. Because the image seems vaguely familiar, the person may perceive it to be an older, possibly deceased relative—a mother, perhaps, or a father who passed away long ago. This can cause great distress and frustration to someone who can’t separate facts of existence from unreality. When you first become aware that the patient is no longer using a mirror to inspect his image, replace it with a different wall decoration. (The same principle holds true for hand-held mirrors or those that rest on surfaces, of course.)

You should think carefully about other wall hangings, too. The cognitively impaired adult can easily misinterpret photographs and pictures on the wall, especially if they are protected by glass. Replace reflective glass with no-glare glass to help the patient focus on the painting or photo and not on what might be generated in her mind from shadows and reflections. Remove images that are abstract or show complicated scenes. Instead, simple pictures of flowers, children, and animals evoke harmonious memories. Textured wall hangings and ones that can be touched, including quilted shams, are a source of great enjoyment. Children’s artwork and unframed needlepoint images hung on walls can serve as tactile or conversational pieces.

Faux windows with views of, say, a Maine lighthouse or California coastline can break up stretches of blank wall. Patients react to these “windows” so positively that many such scenes are being created solely for use in Alzheimer’s facilities.

Eliminate reminders of hobbies that the patient can no longer take part in—any activity that requires fine coordination, for example. At the same time, to encourage hobbies that he can still perform, keep the crafts or tools in clear view, perhaps near a favorite chair.

Finally, a piece of “furniture” that you may want to add is a sturdy fish tank, which can provide hours of viewing pleasure and a chance for the patient to be nurturing by feeding the fish. You’ll have to establish a feeding schedule so the fish aren’t fed too often. And set a comfortable chair in front of the tank—not beside it—so the patient can watch the fish. Do not depend on the person with Alzheimer’s to set up the viewing arrangement.

Use Images to Replace Words

As directions become more difficult and memory less reliable, use images of items to supplant words. Put a picture of dishes on the door of the cabinet where the dishes are stored, a picture of panties on the front of the underwear drawer, a picture of a toilet on the bathroom door or next to the door if you want to leave the door open, especially at night. Frequently assess the environment to adjust or compensate for changes in the patient.

Safety Devices

Many devices can make a patient’s surroundings safer. For instance, at the top and bottom of the stairs, you can install child safety gates. Keeping a person with Alzheimer’s from climbing stairs is as important as protecting her from falling down them.

Closets also present problems. If the closet doors have knobs, you can install childproof locks on them. These locks, which do not have keys, require some finger dexterity to open but they are quite manageable for most care partners and too complicated for someone who is cognitively impaired. Use these locks to prevent the patient from entering any area where harmful substances are stored, where last season’s clothes have been placed out of sight, or where you don’t want her to explore. You can also employ these locks to secure items such as medical, cleaning, and other supplies in drawers; one unsuccessful attempt to open a drawer is usually enough to keep the patient from trying again.

If your home has a fireplace, you may want to camouflage the opening by placing something colorful inside it, such as a large basket of yarn or a silk flower arrangement. Remove any fireplace screen or door and put it out of sight. Of course, keep matches and other lighting implements well hidden at all times.

If your stove or oven is electric, have someone install a “kill switch” in a place known only to you. Such switches allow the habilitator to use the stove or oven at will but make it impossible for the patient to turn on. If you have a gas stove or oven, consult your local gas company on how to make it tamperproof. The patient should think of the appliance as broken instead of believing that he is unable to make it work. Keep ...