Science and Research Questions

It is increasingly stressful and challenging for patients with dementia to go out into the world, where they may have to face uncomfortable and overwhelming stimulation. Readiness to go out requires encouragement, regular practice, and activities that are not over-stimulating.

Headaches, including migraines, are reported by patients with Alzheimer's disease but whether the rate is greater than among patients who do not have this neurological disorder has not been determined. Although the accepted answer to this question is that there is no established connection between Alzheimer's and headaches, some researchers have found increased headache prevalence among people who have a particular familial Alzheimer's disease gene, called PSEN1.

Possible explanations for headaches in Alzheimer's patients include cerebral inflammation, issues with blood pressure, vision problems, and medication side effects, each of which can be treatable causes of headaches.

Stem cell research holds great promise for learning about the mechanisms of Alzheimer's disease, and scientists have hope that stem cells may help us learn new ways to understand and fight this terrible disease. As of yet, however, there are no stem cell therapies available and patients cannot obtain stem cells as a treatment for Alzheimer's disease. To learn more about stem cell therapies, please visit the website of the International Society for Stem Cell Research.

The earliest stages of Alzheimer's disease, according to the National Institute on Aging, are characterized by brain accumulation of beta amyloid without obvious behavioral or cognitive changes. The earliest cognitive changes, detectable only on careful neuropsychological testing, may be subtle changes in memory storage. When Alzheimer's disease produces actual cognitive changes, some of the first ones are non-diagnostic (that is, they could just be signs of normal aging). The affected person feels like he or she is not remembering things as well as as they used to, but nobody else notices. The next stage in progression toward Alzheimer's, is “mild cognitive impairment,” and at that point the memory difficulties start to attract others' attention. The affected person has trouble recalling words or names, performing complex tasks, remembering what he or she has read, or planning and organizing things. This usually, but not always, progresses to Alzheimer's disease, which in its mild phase is noticeable to friends and family and even to people who did not previously know the patient. Early-stage Alzheimer's disease includes more obvious cognitive changes including forgetting significant recent events, and having greater difficulty with complex tasks such as calculating the tip in a restaurant or balancing the checkbook and paying bills. Emotional changes such as those seen in depression may also be more apparent at this stage.

Researchers and clinicians (as well as patients and their families) have become much more interested in “biomarkers” recently. Biomarkers are biologically demonstrable physical characteristics that are associated with such things as increased disease risk. In Alzheimer's disease, biomarkers are associated both with amyloid accumulation and with neuronal destruction. At this juncture, however, the ABO system of blood typing has not been found to predict risk for Alzheimer's disease.

The interest in coconut oil as a treatment for Alzheimer's disease has arisen from earlier observations about how the brain's ability to use glucose as an energy source is abnormal in Alzheimer's disease and that the brain appears to have the ability to use a different energy source, ketones, as an alternative. One pharmaceutical company explored the development of a drink rich in medium chain triglycerides (the type of fat that is present in coconut oil) and has marketed this as a "medical food." There is a physician who has generated interest among many individuals as a result of her treatment of her husband's Alzheimer's disease with coconut oil that is enriched through mixing it with another oil rich in medium chain triglycerides. However, the data in humans supporting this treatment approach are still too limited for scientific confidence. It is important to note that one should always consult with their physician before taking vitamins, supplements, or “medical foods.”

Without knowing much more detail, the most important advice I can give you is to follow up with your neurologist and ask what role the chemotherapy may have played in your symptoms. You are not alone in experiencing memory and sensory problems that may be linked to the use of cancer chemotherapy medications, and your neurologist will consider the “bigger picture” that includes your age, past medical history, current medications (and whether you are still getting taking anti-cancer medications), alcohol use, overall symptom picture, family history, and results from blood tests and neuroimaging. Based on those additional pieces of information, your doctor(s) will assess the most important causes of your symptoms and which, if any, of the available treatments might be most valuable.

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.