Ask an Expert about Alzheimer's Disease

The use of aspartame is a topic of great controversy, with strong proponents of its benefits as a low-calorie sweetener bumping heads with nutrition-oriented critics concerned about potential toxic metabolites and other alleged toxic effects. Although a link between aspartame use and memory loss, brain poisoning, or Alzheimer's disease has been suggested by some, at this point there is no convincing evidence that moderate and appropriate use is linked with these adverse outcomes.

Now that we recognize Alzheimer's disease to include a prolonged pre-symptomatic phase during which a destructive disease process is progressing silently, it's very clear that we should attempt to delay the course of the disease during the early stages and prolong the experience of a healthy life. In the late stages of Alzheimer's disease, however, the question of whether to delay progression becomes a profound and complex consideration. In advanced dementia, designated health care representatives are called upon to interpret and implement the presumed wishes of an affected person who may no longer be living what many of us would consider a life of acceptable quality. In my clinical practice, however, I have frequently known mildly, moderately, and even some severely demented adults to enjoy a seemingly good quality of life, highly dependent upon others for basic everyday functions but capable of mutually rewarding social interactions and pleasure. The decision to prolong life despite significant and likely progressive medical compromise is a complicated process that should be anticipated by each of us and, if possible, made clear in advance to those who will be designated as future health care representatives and tasked with making difficult decisions on behalf of us when we are unable.

A repetitive behavior such as this may reflect a variety of causes, and it's tough to figure out which are most relevant without a more detailed analysis. I wonder if this repetitive behavior reflects feelings about her husband's absence. Also, have you've tried to sit down with her and reminisce about her late husband by looking at pictures and sharing fond recollections? Perhaps that would be a way of giving her some relief from the need to interact in this way with his possessions. Other possible explanations for her behavior might include anxiety (her deceased husband's jewelry may provide a comforting effect), a manic reaction (accounting for the sleep disturbance), or just lack of other activities that might occupy her (such as a jigsaw puzzle to work on) if she experiences disrupted sleep and wants to get up during the night.

The antipsychotic medications all carry a warning on their prescribing information for increased risk of various medical complications, including an increased risk for death, yet they continue to be used because there are few alternative drugs from which to choose. The antipsychotics can often be helpful to a limited degree, but patients taking them must be monitored carefully for adverse effects and prescribers should be using the lowest effective dosage for the shortest amount of time needed. Though I can't comment on your mother's specific needs, there are certainly other medications used to treat irritability in Alzheimer's disease patients. Citalopram has been suggested as an alternative, base on some evidence, and other options that are less well evidence-supported include trazodone, divalproex, and gabapentin. Please consult your mother's prescribing clinician for more details on the risks and benefits applicable in her specific case.

The Exelon patch (rivastigmine transdermal) is helpful in a modest way for symptoms of cognitive impairment and for overall level of functioning, but it's quite difficult to be sure any of the cognitive enhancing medications are “working” when patients continue to get worse. Unfortunately, gradual worsening is a characteristic of Alzheimer's disease and the medicines indicated for treatment do not indefinitely prevent the disease from worsening. Though I can't advise about this decision for your stepfather, consultation with his prescribing clinician may clarify the pros and cons of such a decision.

Primary progressive aphasia is a neurodegenerative disorder characterized by increasing difficulty with finding words. Ultimately there can be a profound disturbance of language function, often accompanied by other cognitive difficulties. There is no cure and there continues to be controversy about PPA's appropriate classification. It is most commonly considered a form of frontotemporal dementia; however, autopsy studies identify a significant number of individuals diagnosed during their lives with PPA who actually had Alzheimer's disease. Typically, PPA is treated with supportive medications to manage anxiety, depression, or insomnia, if these occur, and the central language deficit is addressed with speech therapy. The treatments for Alzheimer's disease might be worth trying in some cases, on the assumption that a subset of people diagnosed with PPA might actually have Alzheimer's disease that has presented in an atypical way. Most cases of PPA, however, are believed to represent a different disease process and therefore might not be responsive to current or experimental Alzheimer's treatments.

Don't think of it in terms of telling your mother to help her remember an upcoming trip or activity; think of it in terms of telling her so that she can prepare for the unexpected. Changes can be scary and anxiety-ridden for cognitively impaired Alzheimer's disease patients. Travelling can be particularly frightening, because it often involves long vehicle trips (car or bus), airplane travel (and sometimes invasive airport security checks), variations in mealtimes, disruptions to a patient's regular schedule, and sleeping in a different location. These all may seem minor to you, but to someone who sometimes cannot remember a conversation that occurred five minutes earlier, it can be downright disturbing (and quite disorientating) to wake up in a strange bed in a strange room and not know where you are or how you got there.

Therefore, anything you can do to help prepare you mother for the upcoming events would be helpful. You certainly can mention the events/trips in advance (we'll be spending the holidays at cousin Sally's this year), but like you noted, it is unlikely that she will remember these statements. Mark the activity or trip on a calendar that your mother can see and be sure to point it out to her. About a week beforehand, you can start crossing off the days until the activity, and remind her that it will only be X number of days until the event, etc. You most certainly will have to repeat yourself multiple times. But hopefully with all of that repetition some of your message will get through to your mother, so that it won't be such a big a surprise or disruption when the event actually happens.

A patient in the final stages of Alzheimer's disease is unlikely to be aware of her state, and therefore is not suffering emotionally. Sometimes occasional moments of lucidity can occur in such a patient, though this is rare. If your mother does ever become lucid enough to become aware of her condition, she most likely would be able to communicate with you as well at that time.