Science and Research Questions

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.

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!

I always like to emphasize that aggression and agitation are complicated symptoms, not diseases in themselves, and they can be caused by so many different things that no treatment fits every patient.

The first steps should involve a thorough assessment of the conditions under which agitation or aggression occurs, the responses these behaviors elicit, and your husband's reaction to the staff's responses. This “behavioral analysis” might identify one or more important causes of his disruptive behavior and it may be something as simple and obvious as painfully tight shoes, constipation, more serious medical conditions, upsetting interactions with specific residents or staff, sensory problems such as difficulty hearing what people are saying, or the frustration of being asked to do things that are too challenging for him.

There are so many possible causes that an individualized assessment is needed, it is recommend that you find a clinician who has this particular skill. Once that assessment and a medical examination are completed, it is important not to move too quickly to prescribing medications. They are definitely not the only solution, and in many cases they're not even the most effective or safest solution. Behavioral interventions, such as having a quiet and less stimulating place to go to, listening to his favorite music, looking at photos that evoke happy memories, or smelling pleasant aromatherapy while having a hand massage might be adequate to reduce the agitation.

If medications are used, many clinicians like to start with the SSRI antidepressants, such as citalopram (though there is a new cardiac risk warning for high doses that must be taken into consideration), before moving on to stronger agents. In most cases, agitation can be successfully managed and it's very possible that the riskier medications can be avoided.

Your question suggests you may feel that you have endangered your patient by going along with the referral for ECT despite the patient's family history of Alzheimer's disease; however, there is no evidence for a harmful effect of ECT in such circumstances. There is evidence to the contrary that untreated depression may be a risk factor for dementia and ECT is a powerful treatment for depression. You will be interested also to know that some treatment centers now administer ECT to dementia patients whose aggression or agitation creates serious obstacles to care at home or in a long-term care facility. Several case studies have been reported in which symptomatic response with acceptable side effects was documented. Although ECT can interfere with short-term memory, this effect is considered temporary in dementia patients as in cognitively intact ones, and the behavioral benefits of a successful course of ECT may well outweigh the potential risks.

That said, ECT for dementia patients must be used with caution because of the possibility that cognitive impairment may reflect a medical condition that should be independently identified and treated. Appropriate informed consent (from a competent patient or an authorized health care representative) must be obtained. Adverse effects can be minimized by using modern ECT technique that emphasizes delivery of minimal current using a unilateral non-dominant hemisphere electrode placement and properly scheduled sessions.

Tomatoes contain lycopene, a carotenoid antioxidant that has been shown to fight a variety of cancers in experimental protocols. Levels of lycopene, along with levels of some other antioxidant chemicals, have been shown to be depleted in the brains of people with Alzheimer's disease. The chemical form of lycopene that appears to be most useful to the human body is more plentiful in cooked than raw tomatoes, but even if tomato juice is not the richest source for usable lycopene it is nonetheless a nutritious drink that is unlikely to cause harm.

A number of preliminary studies suggest that how we eat may raise or lower our risk of developing Alzheimer's disease. Eating a diet that is high in whole grains, fruits, vegetables and that is low in sugar and fat can reduce the incidence of many chronic diseases, and researchers are continuing to study whether these dietary modifications are also applicable to Alzheimer's disease. However, the strongest research supporting these modifications has been performed in animal studies, and remains to be rigorously established in randomized and controlled human clinical trials. Further research will provide clarification on the role of diet in the prevention and/or treatment of Alzheimer's disease.

There are so many reasons why a woman in your mother's circumstances might avoid taking a diagnostic test for Alzheimer's disease. If you start by figuring out the reasons for her reluctance, you may be able to decrease her resistance. Is she convinced that she has no cognitive symptoms? Given her family history, acknowledging the presence of symptoms would be very threatening! Could she be depressed, anxious, or medically ill in a way that is affecting her cognitive functioning? Is she demonstrating symptoms but already unable to appreciate their significance? If that's the case, asking her primary care clinician to incorporate a simple screening test such as the MiniCog or the Montreal Cognitive Assessment into her routine assessment may be a good way to increase the accuracy of her diagnosis.

Apraxia, the loss of ability to perform previously familiar actions, is characteristic of Alzheimer's disease and is increasingly common as the disease progresses. Eating and swallowing, actions so automatic for most of us, can become difficult and confusing in the late stage of Alzheimer's disease.

Determining whether your husband is hungry or full also presents problems, because even if he is able to use the words, he may not fully recognize and understand the messages his body is sending him about hunger or satiety.

The course of Alzheimer's disease is variable, with an average of about 7 years from diagnosis to death, and about 1 to 2 years often spent in the late stage. Your husband almost certainly does feel emotions and will continue to do so. Though he may not be able to tell you so in words, he may be distressed if he exhibits sadness or frustration, and comforted by a kind look, a soft touch, or a calming tone of voice.

Inflammation is thought to be an important contributor to the brain destruction in Alzheimer's disease, and some evidence has suggested that taking anti-inflammatory medications might have a protective effect against cognitive decline and dementia. The best support for this theory comes from epidemiologic studies (without support from clinical trials), so a beneficial preventive effect of anti-inflammatory medications like aspirin is not firmly established; however, a small daily dose of aspirin (used under the supervision of a physician) may have health benefits and there appears to be no evidence that it will increase the risk for Alzheimer's disease.