Common Problems in Early Alzheimer's Disease
Paul A. Raia, Ph.D.
Director of Patient and Family Support
Alzheimer's Disease and Related Disorders
Association of Eastern Massachusetts
The trend toward earlier diagnosis of Alzheimer's
disease has led to greater challenges,
opportunities, and options for patients and their
families. Early diagnosis can be devastating
to patients who still have the capacity to
understand the meaning of their diagnosis.
Yet the sooner the patients and families learn
about the disease and its symptoms, as well
as its implications for their lives, the better
they may adjust to the challenges and plan
together for their future.
Following is a description of some common
difficulties experienced by people in the early
stages of Alzheimer's disease. Not all patients
experience all of these problems. The
coping strategies offered here are drawn
from practical experience of early stage patients and their families.
Short Term Memory Loss
Often, this is the first symptom noticed. Encourage the early stage patient to write notes. Put a blackboard with the numbers of family and friends by the telephone. Each day, create with the patient a to-do list, which he can carry in his pocket. Leave items which are used daily in plain view, out on a counter, for example, so that he will be able to take advantage of these visual cues. Avoid testing the patient's memory. Even questions like, What did you have for lunch? only serve to make him more painfully aware of his loss.
Word Finding Problems
Language problems may depend on the patient's level of fatigue, his mood, the time of day and the emotion behind what he is trying to communicate. Supply the word if he can't. If the patient loses his train of thought in mid-sentence, indicate in a gentle way that it's OK, and that you can come back later to it. Preserving the patient's self-esteem is critical. Some patients in early stages of the disease may also have a problem understanding the language. Never assume that the patient has understood everything that you've said. To increase the chances of being understood, be sure there is no background noise, and that the patient is paying attention and looking directly at you. Use short, simple sentences. Be aware of your body language, and use visual cues like pointing and other descriptive hand motions.
Asking the Same Question Over and Over Again
The key here is patience. Remember, it's the disease. The patient is not doing this to irritate you. The fact that he has asked the same question repeatedly indicates that he is trying to remember something. If the information he is concerned about is important, write it out for him. The best intervention here is to give him something to do that he enjoys and that is failure-free, a task you know he can complete.
Claims That Nothing Is Wrong
Denial is a common coping mechanism, a natural way of protecting the self. Working through denial is a process that takes time. In order for someone with Alzheimer's disease to admit that he is experiencing problems, he must feel safe, supported, and that he has some control over his future. Don't try to use logic to convince him of his condition. Abstract thinking is one of the cognitive areas affected by the disease, and it will be difficult for him to process or recall your step-by-step reasoning. Be patient. He is more likely to respond to emotional support and to opportunities to talk about his fears.
Difficulty Making Decisions and Planning
Changes in the brains of early stage patients cause impairments in memory, reason and judgment, which in turn make it difficult for patients to make choices. Patients may feel overwhelmed when asked to make choices, causing them to feel ashamed of their condition. Limit situations where choices are necessary. Instead, give gentle direction. Rather than saying, Would you like juice, milk or coffee? for example, say, Here is some juice if you're thirsty.
Paranoia, common in early stages of the disease, results from damage to the part of the brain that separates fact from fiction. It is also one way for the patient to avoid the painful realization that he is the victim of Alzheimer's disease. You will not convince an Alzheimer's patient that someone didn't take his wallet. Don't even try. Respond to the feeling behind the paranoia. Tell him, for example, It's frightening not to have your wallet, isn't it? Let's look around together and see if we can find it. Avoid denying the patient's reality.
Changes in Smell and Taste
One of the first symptoms of Alzheimer's disease may be a noticeable change in the patient's sense of smell. Because the senses of smell and taste are so interdependent, you may also see changes in food preferences. This deficit in the sense of smell is caused by changes, brought on by the disease, in the neuroreceptor cells of the nose. A patient who formerly had a sweet tooth may now not be able to tolerate sweet tastes. One who didn't use spices, especially salt, may now want increased spice in his food.
In approximately 10 percent of all people with Alzheimer's disease, there appears to be problems with vision and spatial perception which occur fairly early on in the disease process. These problems are caused by changes in the brain and are generally not caused by an eye condition. Patients may complain that they cannot see as well as they used to, or they may overreach for objects. They may not be able to see objects which are in motion, and they may appear to have problems seeing objects in low light. To be sure the patient's vision problem is not related to a treatable eye condition, consult an ophthalmologist. Be sure that the doctor knows that the patient has been diagnosed with Alzheimer's disease. The patient's visual acuity should be tested with moving objects as well as with standard eye charts. It's important that both the patient and family understand the patient's visual limitations. Because transitions from light to darkness may be hard for the patient, increase the amount of light in your home. Once you know the patient's depth perception or acuity for moving objects is not reliable, driving a car is OUT.
Disorientation and changes in memory, judgment, visual perception and reaction time make driving dangerous for the early stage patient. Each patient's situation is unique, however, so it is critical that the family monitor driving abilities carefully and consistently. If there is the slightest concern about safety, the patient should not drive. The best way to stop the patient from driving is to have his doctor tell him, in person, that he can no longer drive. You may also consider writing to the medical affairs branch of the state Registry of Motor Vehicles to request that the Registry administer a competency test. Another consideration would be either selling the car or having a kill switch" installed so the patient cannot start the car, even with the keys. For many families, this is a difficult emotional milestone in the course of this disease.
Paying Bills and Other Money Matters
Computational abilities are impaired fairly early in the course of the disease. When compounded by memory loss, paying bills becomes very difficult. Most often, patients are relieved when a family member offers to take over this task, but money can also become psychologically significant, as it sometimes represents security or independence. Therefore, allow the patient to carry some cash.
Early stage patients commonly experience depression. Symptoms may include, but are not limited to, withdrawal, crying, agitation, changes in eating habits or sleep patterns (see below), feelings of worthlessness and acting out. Depression can lower the patient's cognitive capabilities as well as his quality of life. The good news is that depression is treatable, usually with antidepressant medications. These medications, when prescribed and carefully monitored by a psychiatrist, are quite often effective, with little or no impact on the patient's cognitive abilities.
Changes in Sleep Patterns
Sleep patterns, in addition to effects of depression, may be altered by neurological changes to the patient's internal time clock. This may mean that the patient is up and about, unsupervised, during the early morning hours. To ensure the patient's safety, make sure all knobs are taken off the kitchen stove, and the doors leading outside are secured, particularly if the patient is likely to leave and not find his way back. Keep in mind, too, that as people get older, they require less sleep, and don't worry about the adage that we all need eight hours of sleep a night. Some patients may also have periods of disorientation when they awaken. This has to do with their inability to disengage from REM sleep (Rapid Eye Movement, or the phase of sleep where the most vivid dreams occur). This experience can be upsetting to both patient and family. It may not be a good idea to let the patient nap in the late afternoon, a particularly difficult time to maintain clear thinking.
Every Alzheimer's patient can get lost, even in familiar places. So that he can be found quickly, inform your local police department that an Alzheimer's patient lives in your home, and give the police a recent photograph with personal data, such as age, height, weight, hair color and other identifying characteristics. Also, be sure that the patient has an ID bracelet indicating that he has memory impairment. Call the Alzheimer's Association in your area for information.
Taking medications on a set schedule is important for anyone. For the Alzheimer's patient this may be an impossible task, even in the early stage of the disease. The patient needs prompting. A telephone call during which the patient takes the medication, while you are on the line to prompt him, is the most reliable method. Using notes or pill containers, unfortunately, leaves you unsure if the patient actually took the medication, or took it at the correct time. Caregivers at home with their patients must monitor medications closely. Make sure that you Alzheimer proof the patient's medicine cabinet; that is, clear it of ALL over-the-counter and prescription medicines.
Can Experimental Drugs Help?
There are a number of drugs being investigated for their abilities to give patients the maximum cognitive potential in the early stages of the disease. Some of the drugs are in trials in the Boston and Worcester, Massachusetts areas. There may be side effects associated with each of the drugs being tested. It is important to understand these risks, however minimal. Each of the drug trials has strict admission criteria. Basically, the patient must be in relatively good health, be in the early stages of the disease and be committed to satisfying the requirements of the study. There is generally no charge to the patient. Some studies use a double-blind method, in which neither the researchers nor the participants know who actually receives the drugs being tested, and who has a placebo. For more information, call the Alzheimer's Association Helpline at (617) 494-5150.
Telling the Patient He Has Alzheimer's Disease
Families are often concerned that knowing what is causing the patient's memory loss, disorientation and confusion will cause him panic, depression and perhaps hasten the deteriorative process of the disease. The opposite is more often true. A patient who is told nothing about the source of his problems will tend to do worse, because he will try desperately to remember things and become frustrated, agitated and possibly depressed when he cannot. A patient needs to know that something is causing the problems he's experiencing, that he has a disease that is affecting his memory and other parts of his brain, along with his ability to do things independently, and that it will get worse in time. You don't have to call it Alzheimer's disease if you think that term will upset him. It may be helpful for some patients to have a name for their illness, however. It gives them something specific at which to direct their anger, something to fight against.
The amount of information the patient is able to understand about the disease and its prognosis depends on how far the disease has progressed. If the patient is told about the diagnosis while most of his intellectual capabilities remain, he's likely to adjust better emotionally.
Telling someone you love that he has Alzheimer's disease may be one of the most difficult things you'll ever have to do. Consider the telling an act of love.