Ask an Expert about Alzheimer's Disease

There often does not seem to be any rhyme or reason to which people are “remembered” and which are not by a person with Alzheimer's disease (AD). Generally, those individuals who have been known by the person with AD the longest, or those who lately are in most frequent contact with the person, tend to be remembered better, though this certainly is not always the case. For instance, an AD patient might not recognize his own wife but instead remember the boss he worked for 30 years prior.

Looking through old photo albums is always a good activity to do with someone who has Alzheimer's disease. He or she may not remember all the faces or stories in the pictures, but that is fine. You can help by just narrating the photos and not quizzing the person. For instance, constantly asking “do you remember so-and-so?” or “do you remember this trip to the lake?” can be frustrating to a person with Alzheimer's disease and can make him feel ashamed if he cannot recall the persons or places in the photos. It is better to just casually narrate the photos.

Examples might include:

• This is Susie and her crazy dog that once tore up mom's favorite slippers.
• I like the hairstyle on this lady.
• These people look like they are having a fun time at the party.
• Look at the snow on that house!

This allows the person to participate in the discussion without actually having to remember who or what they are looking at. The patient may surprise you and be able to tell you a story or two about the photos. Especially if the photos are old, it is not unheard of for a person with Alzheimer's disease to clearly remember a past event but forget what happened to him or her just that morning.

You can do the same when talking to the person by asking open-ended questions instead of questions that require a specific answer. For example, instead of asking “do you remember the Christmas when “X' happened,” ask “what do you like most about Christmas?” or even “what is your favorite holiday?” In general, you will have to gauge the response of the person to determine if your topic of conversation is in any way distressing him. If you sense he is becoming agitated, simply change the topic to something more agreeable—the weather, sports, anything mundane—until the patient calms down.

If you occasionally visit a person with Alzheimer's disease, it is certainly very helpful to reintroduce yourself each time you visit or else have a caregiver give the introduction. A good introduction will not only include a name and relationship to the patient, but also a brief description or story to hopefully engage a memory. For instance, you can say “this is Brian, your son-in-law. He and your daughter Lucy just celebrated their 20th wedding anniversary. When they were engaged, you went fishing with Brian to 'see what he was made of,' which was pretty funny because you were the one who got seasick.” This gives the patient a little something to go on in case they cannot immediately pull the name “Brian” out of their memory. And even if the patient still does not recognize the person being introduced, the introductory story can provide an opening for a conversation on a related topic.

You and your husband will have to continually re-evaluate your mother-in-law's condition as to whether or not it is safe to leave her alone. She could easily have an accident (or cause an accident) and may not have the wherewithal to contact you at work in case there is an emergency. You cannot assume that she will remember how to use a phone and dial your work number. Simple tasks such as this can be overwhelmingly confusing for a person with dementia, even if they have successfully performed the task in the past.

Consider the following when trying to decide whether or not she should be left alone:

• Does she seem agitated or depressed when you leave her alone? 
• Can she recognize an emergency situation? Would she be able to phone for help?
• Does she wander or leave the house? Does she become confused when she leaves the home?
• Does she try to do things she used to do, but are now unsafe for her to do alone (use the oven or other appliances) or at all (drive a car)?

In the meantime, make sure you safeguard the home:

• Install locks on doors of rooms and cabinets that your mother-in-law has no need to access.
• Install sturdy handgrip bars by toilets and tubs.
• Make sure walkways and stairways are clear and have no tripping hazards.
• Unplug stoves or microwaves when you leave.
• Make sure there are no open flames in the home.
• Put up signs on exit doors that will discourage your mother-in-law from leaving (Stop, Do Not Enter, etc.)

You also might consider installing locks on the doors that require a key (or keypad) from both directions (to enter and exit the home). Finally, you may want to consider purchasing a medical I.D. bracelet for your mother-in-law.

Temporary episodes of lucidity can sometimes occur in Alzheimer's disease. Because of the nature of Alzheimer's disease, a patient may have brief moments of clarity interspersed amongst long periods of confusion and forgetfulness. Agitation and paranoia are also commonly seen in the mid-stages of the disease, which is consistent with the stage your mother is currently in. Alzheimer's disease is a day-by-day disease, because every day can bring something new to the table. Your mother's memory and agitation may be increased today (or even this week), but may be gone in a day or two.

However, if her agitation and paranoia seem to persist, you should consider contacting her physician for an evaluation. She may, for example, be suffering from an infection or have a pain that she cannot relay to you; the discomfort or pain may be disturbing enough to affect her behavior. A doctor's examination could therefore help to rule out medical causes for her change in behavior.

If no medical condition is found to be the culprit, then anti-anxiety medications might be of help to reduce her agitation. You can also try to determine if there is an environmental reason for her change in behavior. Is there someone new living with you? Have there been any significant changes to her daily routine, such as when/where/what she eats, where she sleeps, where she goes, who she visits, etc.? Sometimes seemingly insignificant changes to the routine of a person suffering from Alzheimer's disease can greatly impact his or her behavior. If the agitation continues, try to do a little detective work to determine whether something in her general environment may be disturbing her. Then, if possible, try to remove or limit these factors.

Seeking an explanation of these distressing feelings for 25 years must have been an extremely frustrating experience. I don't think I can provide the definitive answer you've been looking for, but I can suggest a course of action. There are many things that can contribute to the symptoms that you have been experiencing; however, they appear to be consistent with an anxiety condition. Over the years, I'm sure you have noticed various things that make it better or worse, such as sleep, caffeine, exercise or stress, and if you haven't already done this you might make a careful list of the factors that affect your symptoms. Then, find a doctor who has expertise in treating anxiety disorders. The assessment of your symptoms will include consideration of atypical headaches, focal seizures, nutritional deficiencies, toxicities, and sleep disorders among other problems. If, after a thorough evaluation, it seems that anxiety is the most probable explanation, you may be given medication and encouragement to participate in cognitive/behavioral psychotherapy. Don't give up—there is probably a clinician who can help you feel better!

As research data about Alzheimer's disease have accumulated, our understanding of the underlying genetics has deepened. The current view is that many genes may be involved in the risk for Alzheimer's disease, and the early-onset cases known as FAD (Familial Alzheimer's Disease) account for only about 1 in 20, or 5%, of all cases. FAD does can indeed become symptomatic earlier than other cases of Alzheimer's disease, occurring even in the 30s and 40s, but the majority of those affected show their first symptoms in their 50s or early 60s, an age range that still includes your mother. You may wish to consult a geneticist for family counseling and more detailed advice, and you are likely to find the following book of interest: Decoding Darkness: The Search for the Genetics Causes of Alzheimer's Disease by Rudolph Tanzi and Ann Parson, Perseus Press.

Although it's not typical for serious symptoms in Alzheimer's disease to reverse for long, it's not unusual to see some waxing and waning of severity from day to day. The patient who recently seemed to say her final words may surprise everyone by speaking again; the patient who stopped eating independently may temporarily regain that skill; and the patient who seems to have stopped walking may take further steps. This could just be waxing and waning of Alzheimer's symptoms, but there is also the possibility that this patient had a temporary illness such as a flu or minor painful injury that's now better, or that the dementia is actually a case of Lewy body disease, which is more typically a condition that waxes and wanes and includes falls. When an improvement such as this occurs, it's a challenge for caregivers to enjoy the change but not be too painfully disappointed if it fails to persist.

It would suggest that you talk with your mom's doctor about perphenazine. This is an antipsychotic medication that was probably started to reduce agitation or psychosis, or to relieve anxiety or insomnia. Perphenazine, initially sold under the brand name Trilafon, may have been a reasonable choice at one time; unfortunately, the medication may have outlived its value and may now be contributing to your mother's discomfort. Older adults who take these antipsychotic medications are especially prone to develop uncomfortable restlessness (what clinicians call “akathisia) or even a persistent disturbance of movements called “tardive dyskinesia” after long-term use. Please consult a neurologist, who may wish to find a replacement for the perphenazine and also consider some other possible explanations for her excessive activity.