Ask an Expert about Alzheimer's Disease

Alzheimer's disease patients often confuse the past and the present, and may think that someone from their distant past is still among the living. Your mother's continued asking to see her mother might stem from an underlying fear of being alone, or being left behind by those that she loves. The next time she asks about her mother, take it as an opportunity to talk to her about these underlying emotions. Say to her "You miss your mother, don't you? Why don't you tell me about your mother and her favorite song, recipe, or holiday,” for example. Sometimes when you engage Alzheimer's patients in such topics, they become interested in telling you a story rather than repeatedly asking about their loved ones whereabouts. So if you keep her distracted by asking open-ended questions about her mother, then it may become unnecessary for you to directly answer about where her mother is.

However, like you suggested, it may also reasonable to tell your mother that your grandmother has passed away. Be gentle when you deliver such news because it may come as a shock to her—she truly does not remember or understand that her mother is gone. Make sure you provide your mother with plenty of reassurance that she is loved, valued, and will be well cared for. Also, don't be surprised if you have to repeat the whole conversation the next day (or even later the same day). Never yell at her because your mother likely has forgotten what you told her previously.

You and your siblings would be best served consulting an attorney who specializes in elder issues, such as one that can be found through the Elder Law Answers Organization. Some legal advice can also be obtained through the Administration on Aging, which can be reached at (202) 619-0724 or at www.aoa.gov.

The assisted living facility where your mother lives may have rules governing the care of their residents who become violent, or pose a threat to themselves or staff, or are otherwise unmanageable. Residence at the facility may be contingent upon agreement to these rules. Instituting the Baker Act may allow the facility to proceed with treatment to manager her behavior so that they can provide her with the care she requires. However, because your mother has a living will requesting no medical intervention should her dementia become violent, then this document may supersede the rules of the assisted living facility. Because the exact requirements for enacting the Baker Act can vary by state, a lawyer in the state in which your mother resides would be best able to answer questions pertaining to your unique situation.

At first glance, it might be difficult to imagine how inflamed gums might be associated with Alzheimer's disease (AD), but the possible links are many, and the interactions between periodontitis and AD have been the subject of a significant amount of research. Periodontal disease is known to be associated with systemic inflammatory diseases such as rheumatoid arthritis and atherosclerosis. AD, too, has an important inflammatory component. A link between periodontal disease and AD could conceivably represent the consequence of increased systemic inflammation associated with higher levels of circulating pro-inflammatory cytokines that may contribute to the ongoing inflammatory neurodegenerative component of AD. Other hypotheses include the possibility that periodontal bacteria influence the neurodegenerative process, that anaerobic oral flora interact with dental amalgam to produce neurotoxic mercuric compounds that in turn affect the brain, or that severe tooth disease with tooth loss and dentures that are removed at night might result in a compromised airway and obstructive sleep apnea with nocturnal hypoxemia (low levels of oxygen in the blood).

These proposed relationships suggest ways in which the occurrence of periodontal disease might increase the risk for AD, but the link may be more complex: some authorities have suggested that a genetic predisposition to produce increased proinflammatory factors might underlie a concurrent greater risk for periodontal disease and AD. In that case, there would be relationship of association rather than causality. A further possibility is that dementia is associated with reduced self-care and oral hygiene neglect. The possibility that the stress of living with AD, as either patient or caregiver, might also help us understand the observation of increased gingivitis observed in caregivers of AD patients. In any case, it seems clear that oral hygiene's importance reaches far beyond the mouth.

As with any illness, there is certainly the possibility for a person to stretch the truth a little to garner more sympathy from others. After all, who doesn't like a little extra attention from loved ones when they're feeling sick? So yes, it is possible that your grandmother may exaggerate her symptoms from time to time in order to receive a bit more sympathy or attention from you. However, I also wouldn't doubt that she does have real lapses in memory. Your grandmother may be frightened or upset when she realizes she's forgotten something, and therefore seeks reassurance from you and your family.

Along with causing memory and cognition disturbances, Alzheimer's disease can also affect a person's personality, leading to mood swings and uncharacteristic behaviors. Patients who were once easy-going and sincere can become argumentative and even mean, for instance. There really is no way to predict how someone will be affected by the disease. Similarly, there is no way to know which of your grandmother's behaviors are deliberate and which are not. So for your own sanity (and your other family members' sanity), just assume that every uncharacteristic behavior she says or does are due to the disease, then plan your reaction accordingly. If you start with the mindset that her behavior is not deliberate, then you will be in a better position to determine how best you can help her. And don't feel guilty because it sounds like you are doing a very good job. You are being a responsible, considerate grandchild by visiting her regularly and trying to comfort and reassure her as best you can when she becomes upset.

When she starts badgering you to visit her more, remind her what a great time you had at your last visit and tell her how much you're looking forward to the next one (and remind her exactly when that will be). If she becomes insistent that you visit more, just say, “Oh grandma, I really wish I could spend every day with you, but my schedule just doesn't permit it.” Then ask her if there is anything special that she'd like to do during your next visit and try to honor her request as best as possible. Although at times you may feel like getting mad at her for acting up, try your best to remind yourself that her actions are not deliberate and that deep down she is probably just scared and needs reassurance. Getting mad isn't going to help her or yourself, and will just create feelings of resentment in the long run. As much as possible, enjoy this time you have with your grandmother, because there may very well come a stage in her disease when she is no longer able to coherently communicate with you.

In addition, sometimes you just need to remind an AD patient about what you have done together, and how much fun it was, in order for them to cease insisting that “you never visit.” For example, you can try keeping a small journal or photo album of your visits. It doesn't have to be elaborate or expertly designed; it could simply be things such as, “visited the garden today and saw the daffodils coming up,” followed by a snapshot of you with the flowers. This is a very tangible thing that your grandmother can hold and look through when she feels lonely or upset. Perhaps your mother, sister and other family members will want to participate in making something like this as well. Persons who visit your grandmother could write a short note for her to read after they leave, sort of like signing a guest book. Or they could bring something along (a joke, a photo, a poem, a pressed flower, a copy of a favorite family recipe, etc.) that could be pasted into the journal. Your grandmother may appreciate having something like this to keep her company when it is not possible for others to visit her.

Constant noise-making, such as whistling, humming, singing, chattering, or chanting, is not uncommon in patients suffering from Alzheimer's disease and other types of dementia. As the disease progresses, it is likely your father will eventually stop this behavior, possibly to be replaced by another such symptom. In the meantime, try to stay tolerant and remember that he would not constantly chant if he could control his behavior better. Although it may seem maddening to you now, there will come a time when you will appreciate your father's ability to “communicate”—even if it is only by ceaseless chanting.

Electroconvulsive treatment (ECT) has successfully been used as a treatment for patients with major depression who are non-responsive to conventional antidepressant drug therapy. In a few reported case studies, ECT was also successful in reducing verbal agitation (e.g., yelling, screaming, hollering obscenities, etc.) in elderly patients with dementia who did not respond effectively to behavioral treatment or therapy with numerous different antipsychotic or anti-anxiety medications. However, in another study in dementia patients having depression, though ECT was overall effective in improving symptoms of depression, it was also noted to cause short-term (1-3 days) delirium. Because these results are based only on a handful of case reports, it is difficult to say whether or not ECT would necessarily be beneficial in your father's case. Therefore, it is best to discuss this issue with you father's physician, or perhaps with more than one physician, before making any decisions.

Most of the symptoms you mention do occur in Alzheimer's disease (AD). However, it is certainly possible that there could be another disease or condition, in addition to AD, causing your mother's behaviors. It is not uncommon, for example, for patients to have overlapping symptoms resulting from one or more different neurodegenerative conditions, often blurring the lines of diagnosis. You mentioned that you suspected that your mother's behaviors go back a long time, since you were a child even. It is therefore possible that your mother could, in addition to AD, have another pre-existing condition that continues to influence her behavior. Chronic severe depression or manic-depression (also called bipolar disorder) can each cause paranoia, irritability and mood swings, insomnia, and even memory lapses among other things. Your mother may have knowingly or unknowingly had one of these conditions before developing dementia.

Unfortunately, because the common repertoire of symptoms that accompany a diagnosis of AD include many of the behaviors you list (tantrums, aggression, memory impairments, speech impairments, mood swings, etc.), without a thorough examination by a doctor who specializes in dementia, it is difficult to say if another related condition or disease is causing these symptoms. Your mother's doctor should be able provide you with more information about the different aspects of AD. Out of concern, you may also consider discussing your mother's behaviors with her doctor—perhaps some of these are symptoms which the doctor is unaware of and should be informed of.

It is true that studies have demonstrated a rapid loss of the cholinesterase inhibitor benefits following cessation of treatment. Your mother, if she has benefited from the donepezil, may show an increase in symptoms. On the other hand, it would be a shame to expose her to a medication that has probably created gastrointestinal discomfort. A transdermal delivery system, such as the patches used to administer rivastigmine, may provide your mother with the therapeutic benefits of a cholinesterase inhibitor while avoiding the gastrointestinal side effects so common with these medications.

ECT is not generally thought to increase the likelihood for developing Alzheimer's disease or other causes of dementia. In fact, ECT has been used to treat depression or agitation, common “noncognitive behavioral symptoms,” seen in dementia patients. The limited evidence available does not find ECT producing lasting cognitive impairment in patients with dementia.