It's bad enough that people with Alzheimer's disease lose the ability to take care of themselves. But what drives most caregivers crazy is that they combine fading cognitive abilities with irritability, anger, stubbornness, and obnoxiousness. Always remember: Behavior problems are part of the disease. They are not malicious. The affected individual has no control over them and is not responsible for them.

That said, caregivers must still control affected individuals' behavior. It's not easy. But it is possible. In their classic book on dementing illness, The 36-Hour Day, Nancy Mace and Peter Rabins conceive of behavior management in terms of "The 6 R's:" Restrict, reassess, reconsider, rechannel, reassure, and review.

Restrict.

First, try to get the person to stop the problematic behavior. Coax, persuade, insist--whatever. The more hazardous the behavior, the more forceful you can be. Restriction often works, but it may make some people more agitated.

Reassess.

Ask yourself: Is there a reason for this behavior? Could it be a drug reaction? Discomfort with the situation? Frustration about an inability to do something? Irritability over your efforts to orchestrate some task? People with Alzheimer's disease may engage in irrational outbursts, but quite often, real complaints underlie the misbehavior. Look for them.

Reconsider.

Try to see the situation from the demented individual's point of view. The world is increasingly inexplicable. Everyone is a stranger. Abilities present a month ago may no longer be there. No wonder they get anxious, irritable, and obnoxious. They're frightened and profoundly confused, living in a world that has become incomprehensible.

Rechannel.

Try to redirect the problematic behavior in a safer, more socially acceptable way. If the affected individual habitually throws your newspaper away, hide today's and leave yesterday's out for throwing away.

Reassure.

Living in a world they don't understand, among people they may not even recognize, who do all sorts of odd things to them, people with Alzheimer's disease are in constant need of reassurance. Be generous with soothing words and loving touch--a hug, a pat on the back, a hand on an arm.

Concealing & Denying Memory Loss

Some people who develop Alzheimer's disease express concern about forgetfulness early on. But by and large, the disease is marked by denial and argument: "I did NOT forget our lunch. You never finalized the arrangements."

It's surprisingly easy to conceal or deny memory problems in the early stages of Alzheimer's disease:

Affected individuals don't look ill, so it often takes a while to decide that something is really wrong with their memory.

Sufferers usually deny their memory problems, so it can be difficult to distinguish between true memory loss and plain cantankerousness, often a hallmark of aging.

Most people who develop the disease begin to do so while living on their own, often alone, so it's not difficult for them to conceal problems until minor crises occur--locking oneself out of the house, forgetting to lock the house, or leaving the oven on. But even these first signs of the disease are within the range of possible normal memory lapses. Lots of people forget to turn the oven off every now and then.

Frequently, personality and social skill remain intact longer than memory. The person appears to be as charming as ever...just a little absent-minded.

Finally, no one wants to believe that a loved one is developing Alzheimer's disease. The tendency toward denial extends to the person's family, and it may take quite a while--and a good deal of arguing--for a consensus to develop among close relatives that something is truly wrong.

Be observant. Periodic absent-mindedness is normal. Persistent absent-mindedness suggests a problem.

Be understanding. It's natural to feel impatient, upset, or angry with someone who's memory lapses disrupt your plans. If your mother forgets the address of her new doctor, it's natural to feel exasperated. If your dad forgets that you invited him to dinner, it's natural to feel annoyed. Experience your irritation--then get over it. Older loved ones are not long for this world. Alzheimer's care may seem endless, but in fact, your time with affected relatives is limited. Try to maintain some perspective.

Forgive yourself and others. If you were tricked by the affected person's ability to hide a memory problem and had to be dragged into the realization by other family members, admit your error, and then forgive yourself. It's perfectly natural to deny a loved one's mental deterioration until it becomes undeniable. If you were the one who insisted that something was wrong while other family members called you paranoid, forgive them. Alzheimer's disease causes enough conflict without relatives resenting one another for differences of opinion in the disease's earliest stages.

Stubbornness

It's only human to stick up for yourself, and to dig in your heels when you feel challenged or ordered around. Add to this a faltering memory, fading skills, and terror of what lies ahead, and many people become even more stubborn.

Like two year olds, many people with Alzheimer's disease automatically say, "No." Whatever you want them to do, they won't do. The difference is that toddlers really don't know any better. But with older adults in the early stages of Alzheimer's, there's always some doubt: Is it the disease? Or is this person deliberately trying to ruin my life?

You may never know for certain. This is exasperating, of course. But it's an expected part of the disease.

It's possible that a stubborn loved one with Alzheimer's is being consciously diabolical. But as the months pass, it should become clearer that stubborn refusals are more likely the result of not comprehending, or feeling threatened by requests and demands.

If saying, "Time for your bath" elicits a refusal, it may be that the person simply does not understand the implications of that statement. Usher the person into the bathroom, turn on the shower, and say, "Take off your shirt."

Compromise as you would with a child. Offer bribes if you have to--"Take a walk and we'll get a cookie." Bribery often makes people feel cheapened, and parents of young children fear it because of the possibility of socializing youngsters to expect rewards for everything. But Alzheimer's disease is different. There's no risk of raising expectations of future rewards. Over time, affected individuals forget you ever bribed them at all.

If all else fails, drop your request for a while and raise it again later.

Sundown Syndrome

There is often a daily rhythm to Alzheimer's disease--reasonable competence and cooperation in the morning, then a downhill course until, by evening, the person is confused and irascible. This is sundown syndrome, mental deterioration and increasing behavior problems as the day wears on.

It's not clear why sundown syndrome occurs, but common sense suggests that fatigue plays a major role.

Take time of day into account as you plan activities for the affected person. Do things that absolutely must get done early in the day, and cultivate a willingness to let go of your agenda by the afternoon and evening.

People with Alzheimer's also become more distractible in the evening. Try to minimize distractions. If you need to tell the affected individual something, first turn off the TV or stereo. Reduce the number of things going on. Don't invite too many guests for get-togethers. Keep things simple, and even simpler after the sun sets.

Wandering

Wandering is a hallmark of Alzheimer's disease. It's potentially quite dangerous for the affected individual, and for caregivers, it's unnerving, and when the person wanders away, often panic-and guilt-inducing.

Wandering is often caused by getting lost, or being distracted by something. New environments often increase wandering because of their unfamiliarity. Some people wander during the day, others at night. Some wander for no discernible reason.

Some people with Alzheimer's wander because they feel physically restless. It may help to take them on long, tiring walks. Then lead them back home, reassuring them about their safety and comfort there.

Many people with Alzheimer's disease wander away from adult daycare centers. You can minimize this by allowing the person sufficient time to get used to this new environment:

** Involve the affected person in the decision to try a daycare center.

** Start sending the person to the center early in the illness.

** Initially, take the person to the center only for brief periods, and over time, gradually extend stays.

** Remain with the person at the center initially, and gradually withdraw over time.

** Use a similar approach with all changes in the affected person's life, and expect wandering to increase during periods of change.

Keep your doors locked, and install childproofing gates where necessary on porches and decks. Lock interior doors if you don't want the person wandering into your basement, or garage, etc. The problem with locks is that may inconvenience other family members and prevent escape in case of fire. Another approach is to install a piece of childproofing hardware called an "over-knob" over doorknobs. Like a childproof bottlecap, these devices do not prevent mentally competent people from operating the door, but they usually deter those with Alzheimer's.

Don't forget to secure your windows. Determined wanderers can slip out that way.

Experiment with footwear. Some affected individuals wander only when wearing shoes. Keep them in slippers and they may stop.

If you can't entirely stop wandering, get the person a medical ID bracelet that says "Alzheimer's disease," and gives your phone number. Otherwise people might think your loved one is drunk, drug-impaired, or crazy.

You might also pin an ID card to the back of the person's clothing. That location decreases the likelihood that the person will notice it, and destroy it or throw it away. Alert your neighbors to the possibility of wandering. Make sure they know who the affected individual is, and can contact you if need be.

Also alert the police, and local shopkeepers.

Medication is a next-to-last resort. However, tranquilizers may have a paradoxical affect, and increase restlessness.

Another next-to-last resort is physical restraint. It's never a pleasant alternative and should be attempted only in consultation with the affected individual's physician, a social worker, and other community professionals who deal with Alzheimer's. However, if everyone agrees that physical restraint is necessary, various devices can be purchased or rented from medical supply houses. Never leave a physically restrained individual alone in a home, because of the possibility of fire.

Your last resort is a nursing home.

Repetition

In a way, this is the opposite of wandering. Instead of being distractible, the person with Alzheimer's becomes fixated on one task and won't stop doing it--folding towels, washing hands, pacing, turning lights on and off.

The deteriorating brain sometimes "gets stuck" and the result is repetitive actions. If the action is not hazardous, there's nothing wrong with letting it continue for as long as you can stand it.

When you must intervene, verbal directions to "stop," may work, but they may not. Many caregivers find that gentle touch is the way to go--leading the person by the arm away from the activity while pointing out something distracting: "Thank you for folding the napkins. Now let's pet the dog."

Hiding, Losing, And Hoarding Things

Just when you need something--the vegetable peeler, your keys, the affected person's glasses--you can't find them. Hiding things, losing things, and hoarding things are quite common in people with Alzheimer's disease. And you can't ask them where they put things, because they don't know.

To deal with this, first get yourself organized.

** Work to eliminate your own absent-mindedness.

** Keep necessary items in secure places at all times.

** Don't leave things lying around.

** Have duplicates of things you need handy--keys, glasses, etc.

If you don't want the affected individual rummaging around drawers and cabinets, secure them with childproofing hardware or locks. Keep your house neat and spare.

It's harder for the affected individual to make off with things if not much is laying around.

And it's easier to find misplaced items if your home is not cluttered.

Get into the habit of looking through waste baskets and garbage cans before emptying them. You never know what you might find. Remember where the affected individual hides things--under seat cushions, in closets, etc. The person may well hide things there in the future.

Sexual Misconduct

People involved in Alzheimer's care are often very concerned about the possibility that the affected individual might engage in inappropriate sexual behavior--exposing genitals, groping people, public masturbation, propositioning children, etc. This is possible, but the good news is that it is not particularly common.

If you notice sexual misbehavior, analyze it carefully. Actions that might be interpreted as sexual may, in fact, be something else. Finding your loved one naked on the front porch may simply mean that he forgot to get dressed. Or felt warm. Genital exposure may signal a need to urinate. If public disrobing is the problem, look for clothes that are difficult to take off: blouses that button up the back, or pants without flies that buckle at the waist.

Public masturbation is often very upsetting to the affected person's family and neighbors. It's not malicious or perverted. It's yet another manifestation of Alzheimer's disease. Masturbation feels good. The person has simply forgotten that it's inappropriate to do it in public.

Another upsetting possibility involves parents with Alzheimer's approaching their children sexually. This is not incest. It's the disease. Adult daughters and sons often look like their parents looked when they were younger, and remind those affected by the disease of how their spouses looked years earlier. Such invitations are almost always cases of mistaken identity.

If you notice any behavior that might be construed as inappropriately sexual, try not to get upset. This just agitates people with Alzheimer's disease. Instead, gently lead them to a private place and calmly deal with the situation.

Following You Around

Some people with Alzheimer's disease follow their caregivers from room to room like puppy dogs. At first, this may be reassuring--at least they stay within sight and don't wander off. But over time, it usually becomes exasperating.

Try to be patient. The affected individual lives in a scary world that becomes less familiar and more mysterious with each passing day. You are a source of security, so it's natural that the person would want to follow you around.

Of course, when you need to go to the bathroom, or would like to take a shower, or have a few moments to yourself, it's hard to remember that you're the affected person's link to personal security. Do what you need to do. You have a right to some privacy and there's no reason you should sacrifice it entirely. Set the affected person up with an enjoyable activity that can hold attention for a while--TV, music, a toy, whatever. Lock the bathroom door. Use childproofing hardware when necessary.

Insults and Accusations

"You're stealing from me." "You're hurting me." "You're trying to kill me." People with Alzheimer's may make accusations that are not only completely mistaken but cruel--sometimes vicious--as well. Such words would hurt under any circumstances, but when they're directed at caregivers who have made major sacrifices to take care of those who have the disease, insults and accusations can be infuriating.

Feel angry and hurt if you must. But always remember: It's not your loved one talking. It's the disease. The confusion, disorientation, and fear that Alzheimer's causes often combine into paranoia, and those who feel paranoid lash out at those who are closest to them. If you're the caregiver, that's you.

Try to look beyond the insult to its underlying meaning. Of course, this is difficult because those free of brain injuries have little idea of what's going on in the minds of people with Alzheimer's. But often, "You're stealing from me," might mean, "This illness has stolen my life from me." "Why don't you feed me?" might mean, "I'm hungry." "My daughter locks me up" might mean, "I can't find my way around."

As a rule, don't argue when a person with Alzheimer's insults you. Instead of saying, "No one's trying to poison you," say, "I know you feel frightened." Instead of saying, "I'm not being cruel to you. If anything, you're being a big pain to me," try, "I know. Life has been cruel to you lately." Arguing only gets the person more agitated and upset. Soothing words are the way to go...even if you feel insulted.

Then gently change the subject, or redirect the person's attention elsewhere. Dealing with insults becomes doubly difficult when you find yourself being berated in public. Take a deep breath and simply announce to those around you: "My father may look perfectly health, but he has Alzheimer's disease. Insults are part of the brain damage it causes."

Telephone Problems

While they're still living on their own, the telephone may be your main link to people with early-stage Alzheimer's disease. The phone can help you keep in touch, but over time, it's bound to become a problem. Many people with Alzheimer's wind up harassing family, friends, doctors, and tradespeople with repeated calls, forgetting that their appointments are weeks away or that their business has already been taken care of. This is a sign that the person's days of independent living are numbered.

Another problem develops when you send affected individuals away from the phone to get or check something. They put the receiver down, and then you're left hanging on the other end, waiting for them to return. It may be a long wait. Or they may get distracted, or forget you're on the line, and not come back at all. One way to handle this is to equip the affected person with a portable phone. The problem with portables is that people with Alzheimer's often forget where they put them.

If the person with Alzheimer's lives with you, the phone may also cause problems. Affected individuals often continue to answer the phone long after they've lost all ability to react appropriate to callers. They forget to give messages. They relay inaccurate information. They hang up on people. There are several ways to deal with telephone issues.

Consider turning off all ringers, and letting a phone machine answer all calls. That way you get accurate messages, and can call people back when you have the chance.

Consider fitting your phone with a device that records all calls in their entirety. These are available at home electronics stores. Then you can listen to the tape and get any information you need from callers.

Or consider carrying a cell phone, and asking people to call you at that number. Then the affected individual won't answer your calls.

Sleep Problems

As people age, whether or not they develop Alzheimer's disease, they sleep more fitfully. With advancing years, people spend less and less time in the deepest stages of sleep. Sleep also becomes lighter. Night-time wake-ups become more common. Some people with Alzheimer's awaken at night to go to the bathroom--and then can't find it in the dark.

Place a night light and porta-potty in their room and point the potty out to them every night before bed.

Exercise improves sleep quality and extends its duration. Encourage problem sleepers to get more exercise. But affected individuals should not exercise in the evening. Evening exercise makes sleep difficult for a few hours.

Discourage daytime napping. Many people develop a pattern of disturbed night-time sleep and daytime naps. It may be tempting to encourage this because it gives you some time off during the day. But you wind up paying at night. You need all the sleep you can get to maintain the personal resilience to care for the demented individual.

Try to encourage a pattern of sleeping at night, and no (or brief) daytime naps. The person's bedroom should support sound sleep.

Keep it dark (except for a night light) with a comfortable mattress and bedding. Quilts are generally less tangle-prone than blankets. Bedrails help some people stay in bed, but agitate others. Experiment and see what works best.

The combination of sleep problems and wandering can be deadly if the person falls down a flight of stairs or out a window. Install gates and window locks, and check to see that they are securely in place before you retire.

A next-to-last resort is sedative medication. The main problem with sedatives is that frequent use causes side effects, notably, hangover-like irritability and confusion, which exacerbate the disease.

Physical restraints are another next-to-last resort. This is never a pleasant alternative and should be attempted only in consultation with the affected individual's physician, a social worker, and other community professionals who deal with Alzheimer's. However, if everyone agrees that physical restraint is necessary, various devices can be purchased or rented from medical supply houses. Never leave a physically restrained individual alone in a home, because of the possibility of fire.

Your last resort is a nursing home.

Stephine Frankile (c) copyright 1993

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