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Answers About Alzheimer’s-Parts 1, 2 and 3 – NYTimes.com

Dr. P. Murali Doraiswamy


Answers About Alzheimer’s, Part 1
By THE NEW YORK TIMES
Readers recently submitted more than 100 questions about Alzheimer’s and memory loss to this week’s expert, Dr. P. Murali Doraiswamy, a psychiatry professor at Duke University Medical Center and an author of “The Alzheimer’s Action Plan.” Dr. Doraiswamy has also been an adviser to government agencies, advocacy groups and businesses.

Because of the number of questions, his answers are being split into several parts. The first two, today and Friday, focus on diagnostic issues, including new tests, the role played by genetics and inheritance, causes and policy issues.

Next Wednesday Dr. Doraiswamy will address treatment, patient care and new clinical trials. (Some questions published here have been edited, and not all questions could be answered.)

The doctor’s answers are meant for educational purposes and are not meant to be a substitute for advice from your own doctor. Readers should contact their physician before making health care decisions.

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Q. Why can I remember everything about a person except his or her name? — Horick, Texas

A. This is known as the “cook-Cook problem.” It is a result of how our brains are wired to enable predictions of future needs based on relevance and strength of associations. Common words with strong functional associations (for example, a cook who will prepare food) are easier to retrieve than proper names (Mr. Cook). Surveys show that more than 80 percent of normal older people report trouble with names. In reality, most of these individuals could probably recall several hundred names, but it’s the one they forget that causes panic. This helps explain why traditional American Indian names like Sitting Bull, which bring up a vivid image, are probably easier to recall.

Q. My question is not medical per se: Do you believe that people diagnosed with Alzheimer’s disease (or other dementias) should be told about their diagnosis? My mom, who had Alzheimer’s, died in 2008, and this was a very contentious issue separating me and my oldest sister who, alas, had health-care power of attorney. I emphatically believe people have to know that they have dementia. I am curious to know if you have an opinion on this. — Carol, Chicago

A. I believe they should be told since they have a right to know and make plans as well as a right to grieve. There are some situations where it may be appropriate to withhold information, such as when the exact diagnosis is uncertain or when obvious harm (such as suicide) may result. Surveys indicate that most family members would withhold the diagnosis from a loved one, but when asked if they themselves would like to know if they had the illness, most said “yes.” This issue is likely to become more contentious as it becomes possible to predict disease more precisely using genetics and brain scans.

Q. “Can you tell me, wait, I forget …” What are initial signs of Alzheimer’s?

If I place an object (i.e. cellphone, keys) in a different spot than usual, it seems to have disappeared. I’ve been leaving house key outdoors in the lock; forget names of folks I’ve met a few times (once reminded, I recall); almost totally forget titles of movies/books – when reminded, I recall..??.age-first of baby boomers, mother is 100+, has Alzheimers.

What are the initial signs of dementia? Memory loss? hysical affectations? Language dysfunction? I am nearing 65, in good health, but often can’t think of a specific word while speaking or briefly forget how to spell a word while typing.

— Wally Wallace, Ames, Iowa; Technic Alley, Toronto; Maureen64, Calif.; Motmista, Pensacola, Fla.; Canadian Content Only, Toronto; Lulu858; Marie Marley, Kan.; Unknown; Susa Bruce, Brooklyn.

A. The “tip of the tongue” (also called “Teflon brain”) phenomenon becomes more common as we age, perhaps due to chemical changes in the brain’s wiring. This commonly affects recall of names and words, and sometimes where you placed objects. Often, turning your mind to something else will make the information pop up. If what you forgot comes back to you a few hours or days later or comes back readily with a cue, it’s probably benign. Sometimes there is a “feeling of knowing,” but other times your mind can go totally blank — for example, where you parked your car at an airport. “Relax, and call me in the morning” is what memory doctors sometimes call this problem.

If you don’t pay close attention to something because your life is hectic, you’re multitasking, feeling anxiety or it has little emotional relevance, the thought will not register as well in your memory. It’s helpful to stick to a routine (e.g. park your car in the same spot daily) or write things down (e.g. a memo to yourself on your phone about where you left your keys).

If cues don’t help or if memory is forever lost or if things are starting to affect your daily activities frequently, then a medical evaluation is in order. Trouble remembering new information is the classic early problem in Alzheimer’s. In some people early changes can also include mild depression or apathy, and trouble with words, repeating oneself and confusion. Some of the things that suggest a serious memory problem are:

1) Memory getting worse over time, and cues don’t help with recall.

2) Memory problems are affecting your work and functioning, and friends or family members are getting concerned.

3) You have trouble learning new information or doing tasks you know well.

4) Forgetting entire experiences rather than parts of an experience

5) Making up stories to cover up the memory gaps.

Bottom line: if you are concerned, don’t hesitate to get your memory checked.

Q. What is the average risk of someone getting Alzheimer’s? If a sibling has it but parents don’t, what is the risk? What about if a parent or aunt has the disease?

My father, his mother and most of his siblings had Alzheimer’s. My mother’s immediate family had no incidence. She is 86 and pretty sharp. What are the chances I will get it?

My father had Alzheimer’s and my oldest sister has also been diagnosed with the disease. What are the chances of having it since we are obviously genetically predisposed? My memory has always been poor and is definitely getting worse. I’m 65.

— Christine R, Roseland, N.J.; Mitchell McG, Manhattan; Penguinwoman, Toronto; Tosia, New York; Ms. Skeptical, Alexandria, Va.

A. The average risk is different at different ages but in general is about 1 in 10. Having a first-degree relative with it increases the risk by two- to four-fold. Some studies suggest maternal family history raises the risk for silent brain changes more than paternal history, but not all studies find this. If no parent has it but a sibling does, then risk is likely lower than if a parent had it. The more distant the relative, the lower the risk.

Q. My father and grandmother both died with Alzheimer’s. What tests should I have to determine my risk?

Should I consider genetic testing for future risk? My mother had a form of dementia, not sure if it was Alzheimer’s, and she lived to 96, but what does that imply for me going forward? Tim G, Seattle; Maryann Cary, N.C.; Ann, New York; Joanna, Berkeley, Calif.

A. There are some genetic tests available — for example, the ApoE4. But we don’t currently recommend testing for predictive purposes in asymptomatic people with history of late-onset Alzheimer’s. Some new types of brain scans to measure build-up of changes causes by Alzheimer’s in the brain as well as some blood and spinal tests are in development that in the near future might be able to predict Alzheimer’s. We are not there yet.

Consider volunteering for a brain-aging research study or prevention study, which may offer memory testing and access to top doctors at no charge. The Alzheimer’s Disease Cooperative Studies group as well as DIAN and Alzheimer’s Prevention Initiative are examples of such studies. The DOD-ADNI is a major study examining whether certain veterans are at a higher risk for Alzheimer’s. Duke is also conducting a prevention trial of aerobic exercise and diet called the Enlighten study.

Q. I would like to pose a separate question: prions? Dementia (perhaps undiagnosed Alzheimer’s) runs in my family (mother, grandmother, aunt). They were from Pennsylvania and consumed animal brain on occasion as part of their diets. Since I do not eat brains, but may have consumed them as part of fast-food low-grade ground beef, this kind of concerns me. I wonder about this also because so many people have eaten fast-food burgers in the last few decades. I would imagine there were a few brains in the mix. Thank you. —K.R., New Jersey.

A. You are right to wonder about this. There is a type of dementia, a human form of bovine spongiform encephalopathy (popularly known as mad cow disease) that humans can contract from eating contaminated cattle brains. Prions are a type of infectious particle that transmit the disease. The condition, known in humans as variant Creutzfeldt–Jakob disease, has a long gestation phase of maybe a decade, so people can be infected without knowing it. The disease was originally thought to be extremely rare, but a recent study looking at human tonsil and appendix tissues estimated that the rate of affliction was significantly more common. Infectious causes for Alzheimer’s have also been proposed but not been widely accepted, even though an amyloid disease in wild cats is known to be transmitted through feces. Many medicines and supplements sold over the counter contain tissues extracted from animals, and many animals we derive meat from are in turn fed entrails of other animals. So the recommendation to not eat animal brains is — a no-brainer! Vegetarians have the lowest risk for this problem.

Q. My husband is newly diagnosed as “mildly cognitively impaired.” Should his neuropsychiatrist order an M.R.I.? Other tests? The only objective test so far has been a 30-question screening test. — Leslie Learman, Buffalo, N.Y.

A. At most centers, a diagnosis of mild cognitive impairment (MCI) is made after a series of lab and memory tests, not after a single test. It is possible your doctor did those but you were not aware of it. The 30-question test is called the MMSE and it’s usually not adequate by itself to diagnose M.C.I. M.C.I., like dementia, can be caused by many conditions some of which (e.g. depression, medication toxicity, vitamin deficiency, thyroid problems) can be reversible. More than a dozen common medications (e.g. sleeping pills, anxiety medications, statins, older antidepressants, antihistamines) have been linked to memory problems that are reversible. Most specialized memory clinics do order an M.R.I. if a stroke or hydrocephalus or brain lesion is suspected as the cause. Lab tests such as thyroid and vitamin levels as well as depression screens may also be ordered.

Q. What is dementia? How is it different from Alzheimer’s? — Sally, Pennsylvania

A. Dementia is an umbrella term used to refer to a decline in cognitive ability – a change from a prior normal state. There are dozens of causes for dementia such as Alzheimer’s disease, vascular dementia, normal pressure hydrocephalus, Parkinson’s dementia and alcohol dementia. Some causes of dementia can be reversible, and that is why it is so important for an accurate diagnosis to be made.

Q. Can Alzheimer’s be overdiagnosed, like A.D.H.D. is being overdiagnosed? — Kate, Salt Lake City

Yes, there is both underdiagnosis and overdiagnosis of Alzheimer’s at primary-care centers and the very best memory clinics. Studies have shown that 10 to 30 percent of patients diagnosed with Alzheimer’s while living had other conditions. Likewise, in one recent study almost 40 percent of patients diagnosed with non-Alzheimer dementias while living had evidence of Alzheimer’s at autopsy. Clearly this is a condition where clinicians are hampered by not being able to look inside the brain. Diagnostic errors are even more common in early onset Alzheimer’s, where patients often wait several years for a correct diagnosis. The advent of Amyvid amyloid PET scan might help improve diagnostic accuracy, provided it is used judiciously.

Q. What is the relationship, if any, between drusen on the retina, and the risk of getting Alzheimer’s? Around age 40 I was told I had some drusen and at age 70 my peripheral vision toward my nose is slightly impaired. The drusen are composed of protein deposits, and I found some online information that doctors speculate they may be related to protein plague in the brain of those with Alzheimer’s. But to date I have not found any information on whether the relationship is completely positive or how much risk I run for developing Alzheimer’s. One paternal aunt developed it around age 80. But my father died at 62 of other causes so I don’t know if he would have developed it or not. — Allison Boyd, Tallahassee, Fla.

A. Changes in the retina (protein deposits, thinning of retinal blood vessels) appear to be more common in people with Alzheimer’s. These are preliminary findings and may in future help us predict risk for Alzheimer’s, but we are not there yet. The tests require equipment only available at an opthalmologist’s office. Also of interest is the finding that people with Alzheimer’s develop a special type of cataract due to buildup of plaque proteins in the lens of their eye. This type of cataract cannot be seen with the naked eye and so a laser eye test based on an eye drop that can stain the cataract (Cognoptix) is being developed for use in doctor’s offices.

Q. Have the plaques on the brain associated with Alzheimer’s had a cause attached to them? Are they the reason the brain is unable to function properly, or are there additional reasons for it? My dad has been diagnosed with Alzheimer’s. Are there other possibilities of disease processes that look like Alzheimer’s but aren’t? If so how do you determine that? — Quantum, Pullman, Wash.

A. The plaques in the brain are due to clumping of a protein called beta-amyloid, and this is one of the diagnostic hallmarks of Alzheimer’s. We don’t exactly know why clumps form or how they relate to development of memory problems. One theory is that some forms of this protein are toxic to nerve cells and this triggers the development of memory problems and brain shrinkage. Plaque-buster drugs have not been successful to date when tested in people with dementia who already have significant brain tissue loss. So scientists plan to see if such drugs could help in prevention. Results will not be out for three or more years. If those trials work, it would bolster the plaque theory; if the trials are a bust, we go back to the drawing board.

Yes, there are many conditions that can mimic Alzheimer’s, including some that are possibly reversible. Physicians use a variety of memory tests, blood and spinal fluid tests and brain scans to help differentiate. A new brain PET scan called Amyvid is now available to detect the presence of brain plaques in individuals with uncertain diagnosis; a negative scan (along with other clinical details) may help your dad’s doctor rule out Alzheimer’s.

Q. How can we differentiate in-vivo between true Alzheimer’s dementia and vascular dementia? — Ferdinando Pisani, Lima, W. Lucas

The clinical history is often a cue – Alzheimer’s is slowly progressive, whereas vascular dementia is often more abrupt onset. If someone can put a finger on when exactly the symptoms started (e.g., I went to the hospital for bypass surgery with a normal memory, and after surgery my memory was never the same), then it’s usually not Alzheimer’s. An M.R.I. scan often shows strokes in crucial memory regions in vascular dementia. A negative Amyvid PET scan (for amyloid plaques) can help a doctor rule out Alzheimer’s and makes it more likely the person has vascular dementia if other clinical features are consistent. Often both Alzheimer’s and vascular dementia may coexist, making it harder to tell.

Q. From caretaker comments on an advice-sharing site, it appears that the progression of late-onset Alzheimer’s is unpredictable in terms of time, and that if the disease seems to appear late, it doesn’t seriously affect life expectancy. Could you discuss this? —Susanna, Liberia; Cheryl, Westchester City.

A. Although we think of Alzheimer’s as a single homogenous disease, it’s more accurate to think of it as a constellation of closely related diseases with each genetic defect resulting in a unique pattern of progression depending on brain areas affected. For example, studies of brain scans show that patterns of brain pathology differ in Alzheimer’s by their inheritance patterns. Yes, late-onset Alzheimer’s can shorten life span, but this too is highly variable — the average life expectancy of someone in their seventies with Alzheimer’s is about 6 to 8 years (which is lower than the 10- to 12-year average for a 75-year-old American). We do know that early-onset Alzheimer’s shortens life span considerably (onset usually in the fifties with a 6-8 year life span). Doctors and caregivers vary widely in their preferences for how aggressively serious medical problems (e.g. cancer) should be diagnosed or treated in those with Alzheimer’s – which also affects life span.

Q. Also, please talk about the physical aspects of the disease. In the end, the disease affects the ability even to eat. But how is it that many people appear physically healthy (even fit) for many years? Cheryl, Westchester City

A. The Alzheimer pathology mainly affects only brain regions that control cognitive abilities initially and only in late stages does it affect brain areas related to swallowing or breathing. Procedural memory (memory for well learned tasks such as how to use a fork) is lost much later than memory for events. Also Alzheimer’s per se does not spread to liver or bones or lungs, as do some forms of cancer, and hence all other body systems can function well till the brain systems that control them fail.

Q. I am confused about cholesterol. I read that a diet high in cholesterol is bad for the brain, yet I also understand that the brain needs cholesterol to function. —K.R., New Jersey

A. Welcome to the club! Too much cholesterol in blood can cause strokes and blockages in arteries that lead to cognitive problems. Animals fed a high cholestrol diet show greater buildup of amyloid plaques. It disrupts the brain’s wiring and synthesis of hormones. We don’t have the right balance yet. Controlled trials of statins have shown no protective effects against dementia, and if anything there are many reports of memory loss associated with statins, especially Lipitor.

Q. Please discuss multifactorial causes for dementia of the Alzheimer’s type, and which ones seem to you to have the most validity in research. — Thirdage Services, Dallas; Elizabeth E. Chute, Montana

I’ve been reading that there is a connection between Alzheimer’s and diabetes. Is there legit science backing that up? How do we think diabetes impacts memory? — Ms Skeptical, Alexandria; Max Williamson, Sedona, Ariz.

The two main hallmarks of Alzheimer’s are plaques and tangles, with the former thought to attack nerve cells from the outside and the latter from the inside. We still don’t know what causes the buildup, other than genetics. Aging and family history are the biggest risks. Inflammation, loss of connections, depletion of brain chemicals involved in signaling, loss of blood supply (due to narrowing of blood vessels, mini-strokes, high blood pressure, high cholesterol, etc), head trauma, low educational level, late life depression, and social isolation are other risk factors. “Silent emboli” (blood clots going to the brain) are common in many older people, especially those with heart wall defects, and a recent study found that the rate of decline in Alzheimer’s was strongly correlated with such clots. We don’t yet know how all these factors interact, but one theory is that the plaques trigger a cascade that leads to tangles, inflammation and blood supply changes. Other people believe that tangles are the trigger, and yet others believe that blood supply changes are the critical event. There is also evidence of an infectious etiology (herpes, chlamydia, etc.) though this theory is not yet widely accepted.

Diabetes affects the blood vessels and flow of blood to the brain. PET scans show that the brains of people with Alzheimer’s, even at very early stages, cannot process glucose normally. Population studies suggest that obesity, metabolic syndrome and diabetes all raise one’s risk for Alzheimer’s by about two-fold. This has led scientists to suggest that Alzheimer’s may be a form of type 3 diabetes in the brain due to insulin resistance. Trials are underway to test this theory more conclusively.

Researchers in Sweden have developed a risk scale using some of these factors that can predict the risk a middle-aged person has of developing dementia 20 years later!

Q. Is there a resource for finding out which drugs have been suspected of increasing the risk of Alzheimer’s disease or other kinds of dementia? — Jessiekitty, Chicago

A. Our book “The Alzheimer’s Action Plan” has a listing of drugs that can impair memory and are inappropriate for the elderly. As such there are no commonly used drugs proven to raise the risk for Alzheimer’s, but there are many drugs that can potentially cause memory problems. These drugs include some over-the-counter sleeping pills, some anxiety medicines, some antidepressants, some antihistamines, some medicines for urinary incontinence, some anti-spasmodics and possibly some statins. The Beers Criteria is a list of medicines possibly inappropriate for the elderly. The list can be found by searching the Web.

Dr. P. Murali Doraiswamy, a psychiatry professor at Duke University Medical Center and an author of “The Alzheimer’s Action Plan,” has been answering readers’ questions about Alzheimer’s disease and memory problems. Part 1 of responses can be found here. Part 2, posted below, addresses diagnostic issues, the role played by genetics, causes and policy issues. His last set of answers, about treatment, patient care and new clinical trials, will appear here on Wednesday.

(Some questions published here have been edited, and not all questions can be answered.)

The doctor’s answers are meant for educational purposes and are not meant to be a substitute for advice from your own doctor. Readers should contact their physician before making health care decisions.

Q. My wife was diagnosed with Alzheimer’s four years ago. Recently I noticed her shuffling her feet. Her posture has been slumping and I noticed a slight tremor in her hand. Could she also have Parkinson’s? – Bill Walsh

A. Clinical diagnosis of Alzheimer’s is not definitive. Time is a better diagnostician. Yes, it’s possible your wife may have Parkinson’s in addition to Alzheimer’s or may have Lewy body dementia or other causes for her gait changes and tremors (e.g. silent stroke, medication side effects, etc.). But it’s also possible that these are benign changes of aging or just Alzheimer’s progressing. So you should discuss this with her doctor.

On a related note, in the field of Alzheimer’s, scientists were so focused on memory that it was only recently that they started doing serious research into how Alzheimer’s affects the gait. Five new studies reported at an international conference showed that slowing of gait and “steering problems” were more common than realized in Alzheimer’s. In one study, 1,100 people with mild cognitive impairment, a possible precursor to dementia, were asked to walk on an electronic walkway under two conditions — with the mind at rest and while counting backwards from 50. The study found that cognitively impaired subjects who could walk normally at rest started wobbling or stumbling when doing the numbers in their head, suggesting their brain was having trouble multitasking between walking and math. In a second study scientists found that slowing of one’s gait by one meter per second was correlated with one greater error on a memory test. Doctors still assess a person’s gait by watching the patient walk a few feet, but that will soon be replaced by more precise electronic tests. In five years, when you walk through the door of your doctor’s office, the doctor might already have a printout of your gait diagnosis!

Q. Have any physiological tests (M.R.I., CSF test) become accepted standards for diagnosis of Alzheiemr’s or mild cognitive decline or do we still rely on 6-8 hours of neuropsychologic testing? – Steve, Oak Park, CA

A. Today, doctors still rely on history and neuropsychologic testing and do an M.R.I. mainly to rule out other diagnoses. As you are hinting, newer cerebrospinal fluid (CSF), M.R.I. and PET scans tests are now available. The criteria for Alzheimer’s had not been changed for over 25 years but last year scientists proposed new criteria dividing Alzheimer’s into three stages. This is to be used mainly for research and places greater emphasis on physiologic measures.

The earliest stage is preclinical Alzheimer’s – asymptomatic people who have silent build-up of plaques or brain shrinkage or have genetic mutations. Such people would be an ideal group to enroll in prevention trials. The next stage would be mild cognitive impairment due to Alzheimer’s, where people show mild memory loss and have positive tests of CSF or scans. This group is also of interest for secondary prevention trials. The third stage would be dementia due to Alzheimer’s, where again physiologic tests are positive. If some 30 percent of cognitively normal elderly show silent plaque buildup, that would imply that more than 100 million people worldwide may meet criteria for preclinical Azheimer’s. Not every one of these people will develop Alzheimer’s, so doctors are being careful to not extend these criteria to clinical practice till more research is done to fine-tune the criteria.

Q. My sister and brother had a condition called Normal pressure Hydrocephalus (NPH) that was misdiagnosed as Alzheimer’s. This seems to be an indictment of current practice which seems too conditioned to assume that conditions are AD. – Arthur, San Francisco

A. Normal pressure hydrocephalus occurs when the spinal fluid pressure increases and causes enlargement of the ventricles (fluid spaces in the brain), which compresses the cortex and memory pathways. Often the cause is not known but sometimes this can be due to trauma, infection or bleeding. People with N.P.H. often show a classic triad of cognitive problems, gait changes and a leaky bladder – but often it’s not so clear cut and that’s when doctors often miss the diagnosis. One study found that about 10 percent of nursing home patients had undiagnosed N.P.H. M.R.I. scans can usually diagnose this at later stages and doctors may also do a spinal tap and a brain scan called cisternography. Early diagnosis is important since surgical shunt placement to relieve pressure can help many N.P.H. cases – there have even been reports of people walking out of a nursing home and becoming fully independent! So yes, early and accurate diagnosis is essential.

Q. I was told about a year ago that I had probable frontotemporal degeneration (FTD) but not dementia as yet. It was suggested that I see a geriatric psychiatrist, but I have not done so because I cannot find any who are done with training who will see me as my primary insurance is Medicare. – Sarah, Durham

A. Try seeing a neurologist, and you might have more luck since there are far fewer geriatric psychiatrists nationally. If the diagnosis is not certain, it might be worth getting an FDG- PET scan after you make sure your insurance will cover it. The patterns of brain glucose use on a FDG-PET scan differ between FTD and Alzheimer’s. There is no approved treatment for FTD but on clinicaltrials.gov you can look through several ongoing clinical trials of experimental therapies such as far infrared radiation, memantine, oxytocin (the so called “love hormone”), tolcapone, TRX0237, etc. Acetylcholine-boosting drugs such as Aricept don’t seem as effective in FTD though there have not been any large systematic studies.

Q. “..the risk of getting (Alzheimer’s) was 3.3 times greater among people whose blood folic acid levels were in the lowest one-third range and 4.5 times greater when blood homocysteine levels were in the highest one-third”. Clarke et. al. Arch. Neurol. 55 (1998): 1449-1455. Folic acid is derived exclusively from plant-based foods like green and leafy vegetables. Homocysteine is derived primarily from animal protein. Does this make sense? Where people are primarily plant food eaters, the incidence of dementia and Alzheimer’s is very low to virtually none. Why isn’t this critical information more widely distributed to patients by the medical community? No drugs involved. Food Inc. doesn’t make a bundle on green and leafy vegetables, but it sure does on animal protein dairy, eggs, processed meats, on and on. Even the heavy emphasis on grains and potatoes displaces green and leafy vegetables in the diet. – Jerry A., Hollis, N.H.

A. You make a good case (I must say I am biased being a vegetarian mostly). Animal studies show a link between saturated fats and brain amyloid plaque buildup. And with a vegetarian diet, there is no risk of mad cow disease. Vegetarians have to make sure they get plenty of vitamin B12. Clinical trials of folate and B vitamins have not been that successful once someone has already been diagnosed with Alzheimer’s, but maybe it’s too late by then.

Q. What is the difference between Alzheimer’s and Lewy body dementia? Can they be differentiated before death? Are treatments similar? — Dnarex, Rochester, N.Y.

A. Lewy body dementia is sort of a family of diseases that resemble a cross between Alzheimer’s and Parkinson’s with memory loss, muscle problems, tremors, slow gait and some fluctuations in consciousness. It causes depletion of dopamine in the brain stem and depletion of acetylcholine in the cortex due to abnormal protein deposits that are called Lewy bodies, after the scientist who discovered them. People with Lewy body dementia also have hallucinations earlier on than in Alzheimer’s. More than a million people are affected, but there is vast underdiagnosis since it is very hard to distinguish in routine practice. Brains of people with Lewy body dementia can also have amyloid plaques (same as Alzheimer’s). Treatment is the same for both conditions except that in Lewy, one has to avoid the use of antipsychotics since individuals with this may be prone to dangerous reactions.

Q. What are the pros and cons of a person with Alzheimer’s having periodic cognitive assessments offered by a neurologist? — Judy Pierce Tao

A. No major cons (other than some test anxiety and neurologist bills!). It’s generally a good practice to monitor cognition carefully at least once every three to six months to see how the person is doing and whether the medications are working or not. Because the disease fluctuates a lot, the more test data points one has, the better the assessment of trajectory. I remember a patient who I thought had Alzheimer’s, but after tests showed the trajectory was progressing too rapidly, we did more tests and found out the person had Creutzfeldt-Jakob disease.

Q. Are there research studies in New England or New York City that track cognitive ability in people with a family history of Alzheimer’s? Most of the studies I have seen follow people who are already impaired. I am very interested in being a subject since, at age 66, I have high cognitive function in all aspects of personal and professional life; however, my family and science background compel me to want to participate in a study of potential Alzheimer’s patients. — Mary Christian Madden, East Greenwich, R.I.

A. Yes, contact the Columbia University or N.Y.U. or Mount Sinai Medical School or Harvard Alzheimer’s research centers. You can also look up studies at clinicaltrials.gov and search for Alzheimer’s.

Q. Why don’t doctors take more care excluding thyroid disease and B12 before pronouncing Alzheimer’s disease? B12 deficiency needlessly devastates too many people who get misdiagnosed with Alzheimer’s because of lack of awareness. — Kit Kellinson, Clayton, Mo.

A. I agree. Vegetarians and those with stomach or bowel surgery may be at greater risk for B12 deficiency.

Q. Could you share any thoughts you might have on the differences in prevalence of A.D. among countries in the developed world. If I’m reading the data correctly, it seems the rates of A.D. diagnosis in Germany, Poland, Ireland, Portugal and U.K., among others, while still considered high, are quite a bit lower than the rate in the U.S. — Cooking, Boston

A. Yes, rates in South and North America are about 10 percent higher than those in European countries, with differences most pronounced in the 85+ age group. This is, in part, because of a detection bias – i.e., differences in awareness and desire for treatment by families and doctors. Rates in China seem similar to the West, but rates in India are drastically lower.

We don’t know if this is because of differences in genetic risk factors (e.g. ApoE4), lifestyle differences (e.g. curry or coconut consumption) or differences in life span. It is interesting that some studies have found that rates for people who live in the country (rural) are different than that of people who live in urban areas (cities). Likewise, rates for second-generation Japanese-Americans are different than those for first generation, suggesting a strong environmental impact.

Q. Are there any tests currently available to diagnose Alzheimer’s? I remember learning that a definitive diagnosis could not be given until examination of the brain during autopsy. Symptomatic memory loss is so subjective; I feel that my memory, which has never been very good for recalling events, is worsening, and I have left the house with things cooking on the stove twice in the last month. I’m concerned (and middle-age) and would be interested in some sort of objective test to determine presence of plaque or whatever it is that causes Alzheimer’s. Thanks. — Annieb3, Calif.

A. Yes, the main test currently available to diagnose Alzheimer’s is a combination of a good history from a person and family and tests of memory and functioning. Doctors will also run blood tests and M.R.I. scans to rule out other causes, like thyroid problems or strokes. A depression screen is also done. Spinal fluid tests of plaque and tangle proteins, like a Tau/Abeta ratio greater than 0.39, have a relatively high accuracy for Alzheimer’s but are not 100 percent accurate.

As I mentioned in my first set of answers, a new PET scan to detect amyloid plaque in the brain was approved by the F.D.A. this year. FDG-PET scans to detect glucose metabolic defects can also be useful to differentiate Alzheimer’s from some other types of dementia. Lastly, a new M.R.I. method, called NeuroQuant, is also now commercially available to help doctors detect shrinkage of specific memory centers in the brain.

Q. How is the APoe4 gene variant inherited? I have (unfortunately) 2 copies. Did I get one each from each parent? Will my kids also have have 2 copies or only one or maybe none? — wj, upstate N.Y.

A. ApoE4 increases risk for late onset Alzheimer’s (by roughly threefold for one copy and greater than eightfold for two copies) and lowers age at onset. Yes, you get one from each parent. One in four Americans carries at least one ApoE4 copy, so you are not alone. The number of copies your kids will get depends on your wife’s genetic status also. If your kids inherit one copy, they may be at higher risk. However, not everyone with E4 gets the disease, since one can also inherit other genes that reduce your risk. And there is some data that the E4 gene might interact with diet, suggesting there may be dietary means to reduce your risk.

Q. My grandmother died of early onset Alzheimer’s in her 60s. Once the disease was diagnosed, her condition deteriorated very quickly. Are there known reasons why one patient might stay relatively stable for several years while another might lose all her memories and have physical problems more rapidly? My grandmother seemed to get much worse right after she was moved out of her home. Is this common?

I am in my late 20s, but family and friends constantly tease me about my bad memory (which mainly causes me to repeat things when I speak multiple times without realizing it and to forget names and details of past events). Do I have a greater risk of developing Alzheimer’s or other memory problems? — Susanna, Liberia

A. As I noted earlier, there is considerable variation in how people deteriorate, some of which is related to genetics and how much of the brain is affected. The environment and degree of family support also affect the rate of progression. Yes, it is common for people to deteriorate when they are in unfamiliar settings, whether it be a permanent move to a facility or even a temporary trip out of town. In many parts of the world, like Asia, the elderly are cared for at home, and this environment is often more stable, humane and comforting to the person with dementia. The Netherlands has a dementia care community called Hogeway Village, designed to mimic almost normal independent living at home, where there are no closed doors and where patients can move freely and staff are trained to intervene as appropriate.

As for the question about your own memory, in younger people the main causes of bad memory are stress, multitasking, heavy drinking, prescription or recreational drugs (e.g. marijuana), attention problems (e.g. A.D.H.D.), thyroid problems, head injuries and even emotional trauma. It is worth going to a psychologist or neurologist to have your memory tested. Given your family history of early onset Alzheimer’s, I cannot exclude Alzheimer’s from a possible list of causes, and you may at a higher risk for developing it. But it’s very rare for it to manifest in one’s 20s.

Q. In December 2011, Congress passed the National Alzheimer’s Project Act (NAPA) to raise the profile of the disease within the federal government and to develop an action plan. Can you please let us know where, essentially one year later, NAPA stands? Is there forward movement, particularly in the area of providing information and coordination of Alzheimer’s research and services across all Federal agencies? — Sally Rosenfield, Wellesley, Mass.

A. Since I don’t have access to NAPA’s deliberations I asked Eric Hall, chief executive of the Alzheimer’s Foundation of America, who is a member of the advisory council that provided input into development of the national Alzheimer’s plan. His response: “NAPA has led to an additional $130 million in requested appropriations for clinical research and caregiving support services in fiscal years 2012 and 2013. In addition, government agencies are now working together and coordinating resources in developing and disseminating best practices on dementia care to health care professionals and family caregivers. A national awareness campaign was also launched which, in addition to a broadcast and print advertisements, includes a new consumer online Web site. Alzheimer stakeholders are continuing to work together to ensure that NAPA is fully implemented and that necessary resources are invested to ensure that the plan achieves its ultimate goal of finding a prevention therapy or treatment of Alzheimer’s disease by 2025.”

Q. Incomplete studies and a lot of junk science. Find your favorite brand of snake oil. — Karl Hattensr, Madison

Dr. P. Murali Doraiswamy, a psychiatry professor at Duke University Medical Center and an author of “The Alzheimer’s Action Plan,” has been answering readers’ questions about Alzheimer’s disease and memory problems. Part 1 of responses can be found here, and Part 2, is here. In our third and final part, he responds to questions dealing with treatment, patient care and new clinical trials.

(Some questions published here have been edited, and not all questions can be answered.)

The doctor’s answers are meant for educational purposes and are not meant to be a substitute for advice from your own doctor. Readers should contact their physician before making health care decisions.

Q. What practical steps can a baby boomer take to stave off dementia of any type? — Canoe9, Hawaii

Q. My dad’s family has a history of Alzheimer’s disease: my grandfather and many of his brothers have either passed away from the disease, or are currently suffering from it. The disease can be traced back for many generations. My father has not yet started to show symptoms. Are there any medications he can take as a preventative measure? What are the best diet and lifestyle choices a person can make who has an increased risk of developing the disease? — VB, Canada

Q. Both of my inlaws have Alzheimer’s. What steps can my husband and his brothers take now to delay/prevent the disease? And should he be monitored at an Alzheimer’s center? — lbs, New Jersey

Q. My mother, two older brothers and two older sisters all had progressive mental dementia (I believe Alzheimer’s ) before age of 65. I am 64 and had extensive mental exam that found no symptoms. For prevention I am doing it as follows. 1. Have become a Vegan with very little use of vegetable oils after reading China Study by Campbell and Starch Solution by McDougall. 2. I use lots of turmeric, ginger, cinnamon in my food. 3. I have run 20 to 30 miles a week for the last 10 years. 4. I retired to reduce work related stress. Is there any other preventive measures you recommend? — Jaque, Champaign, Ill.

Q. My mother had a form or dementia, not sure if it was Alzheimer’s, and she lived to 96. And what can I do to improve my chances? I work out and am not overweight and am in good health otherwise. — Mitchellmcg, New York

A. There are dozens of causes of dementia and steps for prevention are different for each one. We have no proven preventive strategies for Alzheimer’s. The decision to monitor people at risk is made on a case by case basis, but I don’t usually recommend any monitoring until someone is about five years within the age their relative developed it; or they note changes in their memory. My top strategies to keep your brain healthy are listed below.

1. Vascular risks: Minimize your risk for strokes, heart disease and diabetes (keep your body weight, blood pressure, cholesterol and sugar in normal range). Studies find strong links between vascular risks and Alzheimer’s.

2. Exercise regularly: Regular aerobic activities, such as walking, may reduce risk for dementia by keeping the brain’s blood vessels healthy, boosting nerve growth chemicals and slowing age-related brain shrinkage.

3. Stimulate your mind: Socialize actively, make new friends, try new activities, travel to new places and be passionate about learning new things. Adult brains can grow new brain cell connections and developing a greater cognitive reserve might help the buffer against dementia pathology.

4. Heart healthy diet: follow a heart healthy diet such as a Mediterranean diet but heed the old Okinawan saying Hari Hachi Bu – eat only till you are 80 percent full; drink in moderation (but not till you cannot remember what happened the prior night!)

5. Minimize your risk for head injury by wearing helmets. (The Hovding is a new invisible helmet that promises to keeps your hair looking pretty and your head safe!)

6. Take part in clinical trials – pros are that trials may offer regular check-ups and you are helping science; cons are that there are safety risks. Our book, The Alzheimer’s Action Plan gives a step-by-step guide to evaluate which clinical trials are best for you. You might enjoy reading the new book, “Super Brain.” It’s coauthored by the dementia scientist Rudolf Tanzi and the mind-body guru, Deepak Chopra.

Q. I can´t find a Spanish version of “The Alzheimer’s Action Plan.” Will we have it soon? — Marisabel Neuman, Orlando, Fla.

A. Not yet, but we are open to it if you know an interested publisher! But your question does highlight the fact that many Spanish only speakers in the United States and elsewhere are often left out of the mainstream of information on Alzheimer’s. Hispanics in the United States may be at a slightly greater risk for Alzheimer’s due to higher rates of heart disease. Gracias por su interes!

Q. Since my mother developed Alzheimer’s in her mid-80’s, presumably I am at greater risk than the general population, should I live to a similar age. What is your best guess about the likelihood of preventative medications or treatments being developed in the next 25 years? — Beth, Singapore

A. The track record of scientists at predicting a “cure” is not very good (about the same as that of stock analysts predicting the market). The last dozen or so experimental medicines for Alzheimer’s (all touted as the next big thing) have not only failed but results have often been the opposite of what was predicted.

That said, in the next 5-10 years, we will have the results from over 25 trials testing a broad range of strategies such as drugs targeting plaques, drugs targeting tangles, drugs boosting brain memory chemicals, aerobic exercise, different types of diets and medical foods, gene therapy, as well as novel devices to stimulate the brain’s memory centers. (You can check clinicaltrials.org or adcs.org for more information). So the odds are quite good that we will have one or more new treatments by 2025. But even if a cure were in a test tube today, it would take ten years to get to the market. That’s why it’s critical that individuals, such as yourself, sign up for clinical trials.

You may be surprised to learn that one type of “cure” is already available. About 10 years ago, a woman with familial early onset Alzheimer’s successfully conceived a healthy baby free of the harmful APP gene mutation through a technique called preimplantation genetic diagnosis (PGD) at a fertility clinic run by the doctor, Yuri Verlinski. That baby, who would now be 10 years old, has hopefully been cured of familial Alzheimer’s and will in turn be able to have risk free children.

Q. My father, his mother, his mother’s sister, my maternal grandmother and her sister and my maternal aunt all had or have Alzheimer’s – symptomatic onset at 70 and in the early 80’s. I have just turned 60 and think I’d be a great research subject in terms of lifestyle. Can you suggest any research projects that might use me? I understand that some very important studies are being run through Duke. — Kristin Pop’s daughter, Ithaca.

Q. Kristin’s background, age, concerns, and interest in research studies mirror mine – which I have posted. Please inform us of potential studies. I am willing to travel, even to Duke, which she mentioned in her post. —Mary Christian Madden, East Greenwich, RI

A. Thanks for the offer! Most research studies require people to come for multiple visits over several months/years which would be difficult for people living far away. A university affiliated medical center closer to your home might be more ideal. Clinicaltrials.gov has a listing of all ongoing prevention studies. Many such studies are also advertised in pages of local newspapers. The Alzheimer’s Association chapter in your home town may be able to guide you to find a suitable research study in your town. Don’t sign up for a trial just because you have a spare half day. Make sure you thoroughly research the pros and cons. Fewer than 1 percent of drug trials are positive, but 100 percent of all drug trials carry risks. So the odds of you personally benefiting are the same as in a lottery.

Q. Her whole life my mother drank four cups of tea every day, read two to three books a week, ate mostly vegetables, didn’t smoke, drank wine moderately, and stayed slim. She started showing signs of Alzheimers in her mid 50’s and has been steadly declining for 15 years now. Although a bad lifestyle can cause dementia in many people, it is more complicated than that. — Joseph, Fla.

A. Your observation is correct. In fact, most people with Alzheiemr’s that I see in my clinic are very fit and have lead healthy lives. The old saying, “Genetics loads the gun, lifestyle pulls the trigger” is probably apt here and genetics and lifestyle seem to interact in different people in different ways. There are still many genetic factors involved in Alzheimer’s that scientists have yet to identify. The Alzheimer’s Disease Neuroimaging Initiative has teamed up with the Brin Wojcicki Foundation (a charitable organization created by Anne Wojcicki, founder of the online genetics firm 23andMe, and her husband, Sergey Brin, co-founder of Google) to map the genome of Alzheimer’s more deeply. Hopefully the vast amount of new genetic information (165 terrabytes, roughly equal to 165,000 copies of Encylopedia Brittania) from this project will fill in the missing blanks and lead to new tests and therapies.

Q. My doctor recommended fish oil capsules to help prevent dementia. Do they help? Linda, Oklahoma Does a good diet of nuts, fish, and fruit have any effect on the disease? Also, does red wine prohibit Alzheimers? — Jacquie, IO

A. Much of the evidence for fish and good diets comes from association studies that cannot prove a cause-and-effect relationship. These studies suggest a Mediterranean diet (diets of Portugal, Spain, southern France, Greece, and Italy) which comprises small servings of whole grains, legumes, seeds, herbs, spices, mostly small fish, olive oil, yogurt, and fruit may reduce risk of dementia and heart disease. Such diets are not heavy on red meat. Likewise, eating fish (salmon, mackerel, sardines, lake trout, herring, halibut), even once a week, appears to reduce risk of Alzheimer’s. Fish oil contains omega-3 fatty acids which are essential to learning and memory in early brain development but clinical trials of fatty acids in dementia have been inconclusive. Likewise, wine in “moderation” seems to help the brain and reduce risk for dementia, though food scientists in the United States and France still have different definitions for what is “moderate” drinking! So the answer is a qualified yes, until we have more definitive trials. As an aside, polar bears (which presumably eat a lot of organic fish) do develop amyloid plaques in the brain, though no one has tested them for memory problems and there is no control group of non-fish eating polar bears to contrast.

Q. Will choline, as an OTC supplement, help Alzheimer’s in any way? — DBR New York

A. Choline is an essential nutrient for brain development and serves as a precursor for the brain to make a memory chemical, acetylcholine. Acetylcholine levels are reduced in Alzheimer’s (which is also the basis for prescription drugs like Aricept). Dietary choline can be transported into the brain. In the 1980’s, trials of a form of choline, called lecithin, were not successful in Alzheimer’s. A memory drink called Souvenaid, developed at MIT, which contains choline, vitamins, uridine, selenium and omega fatty acids (roughly equivalent to three herrings) is currently marketed in the Netherlands and Brazil as a medical food for Alzheimer’s. Trial results have been promising but not definitive. A trial testing its effects in prevention is underway in Europe and may start next year in the United States.

Q. Hi. My great aunt and now my mother have Alzheimer’s Disease. I have read some studies about it being a fourth kind of diabetes. My mother had the opposite diet. For the 20 years before she became ill she had no fat on a diet to keep her husband (heart disease) well. Could the lack of fat in her diet interacted with a predisposition for Alzheimer’s? — Elizabeth E. Chute, Montana

A. Paleo diets (those that cavemen presumably ate) have not been tested in clinical trials of Alzheimer’s, to my knowledge. The elements of the Paleo diet that are common to the Mediterranean diet (e.g. fruits, nuts, fish, healthy oils, grass fed meats) may well be beneficial to the brain by reducing risk for stroke and heart disease. Likewise, eliminating excess processed foods and high glycemic index carbs (e.g. white bread) can reduce our risk for diabetes and obesity, both of which are good for the brain. However, it should be noted that most wild carnivores, develop Alzheimer-type plaques in their brain with aging and would meet criteria for “preclinical Alzheimer’s”. Fats are essential for the brain to repair its wiring and membranes. So too little fat can hurt the brain just like too much of it can lead to build up of plaques and blockages in the blood vessels. There is probably no single diet that’s good or bad for everyone but it depends on our genetic make-up and ability to metabolize the diet.

Q. Could you please comment on the recently released warnings on the statins’ side effect of memory and cognitive impairment? My father died of supposed Alzheimer’s (but had unusual verbal agility to the end), and I am positive for one e-4 allele. After the warnings came out in February, it took me a couple more months to connect my worsening cognitive ability to the simvastatin, but after I worsened on an increase to 15mg, I have tapered down to 5mg and am stunned by the recovery of my memory/orientation, etc. It saddens me to think of how many Boomers (and even my father) may believe they have a dementia that is “only” statin-induced. The alarm needs to sound louder! — HLlassie, Palo Alto, Calif.

Q. On balance, are people on statins more likely or less likely to get Alzheimer’s? — Scott

A. Observational studies comparing groups of people on statins versus those not on statins, find that statin users are less likely to be diagnosed with Alzheimer’s. However, more rigorous controlled clinical trials have not found any cognitive benefits for statins suggesting that the observational studies may be biased.

Yes, statins can cause memory problems in some people which may resolve after the statin is withdrawn, dose lowered or substituted for another statin. All of the statins differ in their ability to enter the brain. My group published the first series of 60 cases of statin associated memory loss in 2003. In 2010, another publication reported that more than 600 such cases linked to Lipitor have been reported to the FDA.

In such cases as yours, doctors often try to determine whether the memory problem was due to statin or due to other causes, such as a person’s age, underlying undiagnosed Alzheimer’s or coexistent conditions (e.g. heart disease) that can also cause memory loss. Clearly, if lowering the dose made the problem better, then that suggests the statin was the cause. However, reducing the dose of a statin can raise risk for heart disease and stroke in some situations. I don’t recommend people stop or change dose of statins on their own, but to work through their doctors. This may also sometimes involve educating your doctors about the new risks associated with statins.

It often takes 20 years for a drug’s true side effects to become apparent by which time millions of people have already been exposed. There is no such thing as a perfectly safe drug. Every beneficial drug comes with risks, but you are correct that we need to make the manufacturers more responsible for safety issues. Right now if a car is recalled for bad brakes, they fix your brakes for free, but drug companies get a free pass.

Q. According to the scientific articles published in American medical journals, we can see that medium-chain triglycerides, like those in extra virgin coconut oil, look to be safe in supplements, and that in small doses, have strong benefits for human health. As we can find lots of anecdotal reports of successful use of extra virgin coconut oil to control some symptoms of different types of dementias (including Alzheimer’s disease), what does it take to make a double blind randomized research test with extra virgin coconut oil in dementia sufferers? — Carlos R.O. Oliveira, Rio de Janeiro

Q. My mother is suffering from Alzheimer’s symptoms, including memory loss and dementia. We’ve been trying coconut butter and she’s already been to several doctors, but we just don’t know how to proceed. Any suggestions? — David Labes, West Palm Beach, Fla.

Q. Does coconut oil in the diet help? — MC, Honolulu

Q. Do you prescribe Axona for any of your dementia patients? Can you comment on the use of Coconut oil? — Bob DeMarco, Delray Beach, Fla.

Q. What is your assessment of the ketogenic diet to slow the progression of Alzheimer’s? — Ferdinando Pisani, Lima

A. There is a scientific rationale for why coconut oil and ketogenic diets may help the brain. The Alzheimer brain is unable to use sugar (glucose) well. This problem occurs very early in the disease and it is a strong correlate of future memory loss. Medium chain fatty acids (MCTs, fats with 6-12 carbon atoms) in the diet can be converted by the liver into ketones which the brain can use an alternate source of fuel. Ketogenic diets have been shown to help other brain disorders such as epilepsy. Coconut oil is a source of MCTs. Axona is a medical drink comprised of MCTs (derived from coconut or palm oil) that is marketed in the US for dietary management of metabolic problems in Alzheimer’s. A trial of Axona in Alzheimer’s found benefits in a subgroup of subjects. Another clinical trial is being planned to confirm its memory benefits and to test whether it improves brain function.

Axona and coconut oil carry some risks – they can raise blood lipids and cause loose stools. They also need to be avoided in some people with diabetes or kidney problems. So people should discuss it with their doctors before they try it as a treatment. Coconuts are consumed widely in southern India in various forms raising the interesting question of whether it may be partly responsible for lower rates of Alzheimer’s in India. Tom Kha Ghai (Thai coconut milk soup) or Indian coconut chutney are probably tastier alternatives to coconut oil, and both can be purchased at ethnic groceries.

Q. How can medications like Aricept augment disease progression? When is the best time in the “dementia timeline” to implement them? — Kate, NM

Q. I strongly recommend addressing this question. I’ve read that Aricept, for example, is prescribed more to assure the family that “something” is being done when, in fact, it has little effect on this disease. — Cookin, Boston

Q. My husband has early onset Alzheimers starting at age 62. He is now 65. We have tried Aricept and Namenda with no improvement. Is there anything else we can do ? — Lynn, Calif.

Q. Do you have any opinion on the combination therapy of Aricept and Namenda? — Bob DeMarco, Delray Beach, Fla.

Q. Approximately how long are ALZ medications (such as Aricept or any others) beneficial? Should they be continued after the patient has regressed back to, or declined greatly, from his abilities/demeanor when he was placed on the medication? We saw a wonderful results in mood, interactions, and cognitive abilities 8 months ago when he started on several medications and supplements, but he is now sliding back to his “former self.” — Karen, Colo.

Q. At what point should you stop medications for Alzheimer’s? My husband is in the sixth stage and takes 24mg Razadyne and Namenda and now is on rispirone for hallucinations. I question if razadyne and Namenda are effective after five or sixyears. Thank you for your input. — Ann, NC

A. Aricept is the best studied medicine in the field and it has consistently shown symptomatic benefits in several studies. The effect size is small and often difficult to ascertain in individuals. It is indicated for mild to severe stages of Alzheimer’s disease. The combination of Aricept (or others like it) and Namenda has been found in a single study to provide additive benefits in people with moderate to severe dementia. I use this combination often.

Even if there is no real improvement after trying the drugs, sometimes the main benefits from these drugs is to slow the losses. People on them are still declining but perhaps not as fast as they would be. Some studies suggest that the effects can be long lasting. I have had people on these agents for 5 or more years. So it’s a judgment call that you and your doctor have to make together as to whether to stop the treatment or not. Other choices are to not do anything, try less well proven things (such as off-label supplements or herbals).

Q. I read there is new research with radiation treatment on mice which reduced the beta-amyloid in their brains. How long does it take for research like this to make it to human testing? — Donna, Novi, Mich.

A. Far infrared radiation is already being tested in humans. Image guided radiation, a treatment used for cancer, has been tested against beta-amyloid in mice at Beaumont Research Institute. Because the risks of radiation therapy are already well known, it would be fairly quick to get it into human testing – but I seriously doubt it would help human disease and most likely would worsen it!

Q. In 2009, there was a report from the international AD conference about a phase 2 trial with great results using methylene blue (Rember). It was supposed to go into phase 3 trials. Any update on this? I’ve looked on the internet, but could not find anything published. I was tempted to get some methylene blue and feed it, somehow, to my mom, but decided it would be too unethical to do. She died of AD last December. — LW, Chicago

A. The company behind it, TauRx, is now pursuing two late stage trials for mild-moderate Alzheimer’s using a form of the drug called LMTX. It targets the tangles by working as a tau protein aggregation inhibitor. Methylene blue can cause hematological side effects and should not be given without a doctor’s prescription and supervision. People interested in enrolling in trials of LMTX can locate the site closest to them.

Q. I’m a stem cell researcher and we often hear people talking about using stem cells for cell replacement therapy for AD. I was curious if you thought such an approach is workable? One challenge seems to be that new brain tissue possibly grown via transplanted stem cells would not restore memories stored in destroyed tissue. It would be kind of a blank slate. So I suppose it could help with formation of stable new memories. Paul Knoepfler, Davis, Calif.

A. The key challenge is how to deliver them to specific areas in the brain and how to prevent bad outcomes such as cancer etc. We assume it would not restore lost memories, but that assumption might not be true. I am not aware of any ongoing trials in the United States though trials are underway in Asia.

Q. Not to diminish the desire and need for a cure for Alzheimer’s, but sometimes it seems there is too much focus on cures and not enough on helping individuals with memory loss and their families live as happily as possible during the course of the disease. In my sister’s case, there was a stronger desire to medicate than to find programs that kept her entertained and occupied during the day. Are there studies that back up my impression that day programs or specialized arts programs can help lessen the need for too much medication or for institutionalization, at least making a longer home stay possible? Thank you. — Ruth Benn, Brooklyn, N.Y.

That’s a great point. Obsession with “cure” is part of our drive to control and deny that our destinies end with death and that there is a magic pill that will allow us to function without impairment “forever.” But compassionate and smart care requires that we acknowledge the needs of people who do and will have dementia and that we have both day (or night, for “sundowners”) programs and facilities for those who will lack caregivers, and that those facilities have programs to engage the individual as long as possible. Also, that programs for caregivers to give guidance, support and respite. — Cheryl, Westchester, N.Y.

Pharmaceutical manufacturers market, and doctors offer expensive drugs of little or no benefit for dementia that sometimes even have severe side effects like diabetes, heavy sedation or tardive dyskinesia. Desperate families will try anything. I know from experience, they threw everything in the pharmacopeia at my father, to no effect. It seems to me that given the state of knowledge about dementia, an appropriate public policy would be honesty: explaining that once it occurs, most neurological damage cannot be reversed; that people must adopt healthy lifestyle changes if they wish to avoid this disease and that miraculous cures cannot be expected any time soon. Yet it appears that the medical establishment (and drug companies) are encouraging the public to hope for the magic bullet that is just around the corner. Suzanne, Denver

A. Yes absolutely. The United States spends way too much money on hyped up drugs and invasive procedures, and way too little money on improving quality of life. The Netherlands is an outstanding example of a kinder more caring society.

Q. Wonder if meditation and yoga have a protective effect on AD? Peter Tonei, Mass.

A. Absolutely, but I am probably biased, (asking an Indian that question is like asking someone from Bordeaux if wine is helpful). Meditation can improve blood flow, reduce stress, improve concentration and attention, enhance growth factors and reduce isolation. At the cellular level, meditation reduces inflammation and oxidative stress, reduces stress hormones and increases brain growth factors and cellular telomerase length (a measure of cellular longevity). So the rationale is strong but what is missing is a controlled clinical trial to test its effects as a preventive strategy.

Q. I have decided to give my dad bexarotene, as he is declining quickly and I feel there is nothing much to lose. I know trials haven’t started yet, but can you give me an idea of dosage based on its use in cancer treatment? Thank you! Kathleen, Philadelphia

A. Bexarotene is a cancer drug that in mice cleared plaques. I don’t currently recommend this off-label strategy, though I understand your predicament. My colleagues who have treated several Alzheimer patients with bexarotene find no benefits. The drugs can cause several side effects. Lastly, all of the trials done to date suggest that clearing plaques will not have any benefit in humans.

Q. Could you discuss the role of ABeta, Tau, and inflammation on the progression of Alzheimer’s dementia. What drugs are currently in trails that show promise for interfering with these mechanisms. Also, if there are multiple, parallel pathways that effect the disease progression is it possible that individual trials will miss treatments that are only effective in combination? — Richard, Weldon, Colo.

A. We have several drugs targeting Abeta and Tau including antibodies, secretase inhibitors and aggregation inhibitors. The odds of Tau agents succeeding are higher than that of Abeta agents. Until we discover the cause, most likely we will end up using cocktails of drugs targeting various pathways with small incremental benefits, much like we do for cancer.

For the following 7 questions dealing with care issues, I sought answers from Lisa Gwyther MSW, a nationally recognized social worker who directs Duke’s Family Support Program and is a coauthor with me on The Alzheimer’s Action Plan.

Q. My husband of 24 years was diagnosed with early onset last summer, but has shown personality changes for several years, primarily meanness and hostility. It is virtually impossible to communicate with him about his behavior or his illness and has resulted in an extremely strained relationship. I want to be there for him, but he repeatedly asks me to leave our house. He is taking Namenda, Aricept and Wellbutrin. Are there any other strategies you would suggest? — Elgrace, Birmingham, Ala.

A. Neither of you can tolerate a strained relationship, but being there for him now means you will have to take the lead in changing your communication. He is probably scared, confused and feels threatened in a world that doesn’t make sense to him. Telling him why his mean or hostile behavior bothers you won’t help – it will just escalate his feelings of being misunderstood. He is overwhelmed with his own feelings and can’t understand or accept yours. He is looking for his “real wife” from his familiar past. What works best is to acknowledge his feelings and join him in ways you still can. When he asks you to leave his house, try “it sounds like nothing around here looks right to you. I’d like to stay here for now.” Then try a distraction like, “I’m hungry and I bet you are too – let’s have a snack,” (or a ride or walk). Avoid arguments, confrontations or extracting promises from him. If you find something you say reassures him, repeat it as needed.

Q. Medicare-hospice guidelines were developed primarily based on the typical progression of diseases like cancer whereas the AD decline is much slower and the decline of the sufferer is over years rather than months. Do you agree that this is a problem? If so, what thoughts do you have for families who are facing this issue now and in the longer term? Thank you for your work in this field. Caring for a family member with Alzheimer’s is a very difficult experience. — Wlucas, San Francisco

A. More individuals with dementia are using hospice services successfully now than ever before. There are hospice guidelines for Alzheimer’s and dementia, but individual hospices may interpret them differently. You are absolutely right – the progressive decline of Alzheimer’s is very different from cancer in persons with retained thinking and memory capacity. Always ask for a hospice evaluation for a loved one with Alzheimer’s disease – it’s good to know what supports might be available from their excellent comprehensive services. Also download this free 2010 booklet from the National Institute on Aging about comfort and care at the end of life with dementia.

Q. How can caregivers best advocate for support services such as adult day care, Medicare paying for custodial services in the home and some pay to the adult family member who has to quit working to take care of a mom or dad in the home? — JoAnn, Delaware

A. You are not alone. Don’t be a voice in the wilderness. Join state or national groups advocating for these vital support services. Make individual contacts with your legislators. Join Alzheimer’s Association advocacy efforts and they will teach you how to effectively communicate with decision makers. They will make it easy for you to do your part from home. Respond online to the National Alzheimer’s Project Act (NAPA) Advisory Committee, or write an op ed for your local paper or tweet a powerful personal message which just might go viral. Your family experience has power and your family can leave a legacy for those who follow. We must move Alzheimer’s family care support services further up state and federal budget priorities.

Q. I have a friend who is in his early 60’s. Mutual friends have noticed a change in his personality over the last year. He is increasingly disoriented, gets lost while driving in his own neighborhood and has become increasingly hostile and obsessed with certain issues. I am no longer in a position to help him. Do you have any suggestions as how to best deal with this person. It makes me very sad to see this happen to this individual. He has no family in this state. Val, New Mexico

A. He’s fortunate to have friends who care. Start by talking with someone his friends know he trusts. That person can best relay the group’s concerns without the whole group appearing to gang up on him. Perhaps someone knows his family out of state and would be comfortable talking to the family about your concerns? The goal is to get him a medical evaluation from a trusted reliable source and some help managing on his own. He’s probably frustrated, scared or upset even if he isn’t obviously aware of the changes you see or what might be causing them. He is living at risk to himself and others. Even if you meet initial resistance, stay connected to him and keep trying. He needs his friends now more than ever.

Q. My 84-year-old husband is now into a late stage Alzheimer’s. We will be looking for a nursing home soon. In my search, I have found that we are neither poor enough to qualify for Medicaid nor rich enough to pay for care. When will people realize that much help for all stages of Dementia is badly needed? — Judy Christopher, Mahopac, N.Y.

A. Sadly, you represent most Americans who are caught in the middle. People with Alzheimer’s and their families should have safety nets available offering quality, affordable services regardless of the stage of the illness. In the meantime, start your personal search for affordable care options with the eldercare locator, 800-677-1116 or eldercare.gov.

Q. Do you recommend placing patients with late stage Alzheimers on antidepressants? The staff at the care center where my mom resides insists on keeping her on antidepressants, stating that everyone with Alzheimers is depressed. — Roxanne, Iowa

A. Nothing applies to “everyone” with dementia, especially a depression diagnosis or a specific class of medications. People with late stage Alzheimer’s are all different. Many people with late stage Alzheimer’s disease respond to non-drug approaches, especially those which engage their senses like music or pets or one-to-one visits or activities. People living in care centers are entitled to person-centered, individualized approaches to enhance their quality of life as well as quality of care. You must be her advocate and her voice if it is time to review her medications. Ask for help from her physician or the local nursing home ombudsman from your area agency on aging. The ombudsmen are there to represent the rights of care center residents.

Q. I am the primary caregiver (in home) for my 90-year-old father with Alzheimer’s. We have three other caregivers through the week, day and night. He is very combative, especially when his diaper is being changed (eight to nine times a day), brushing his teeth and bathing. What medications for behavior problems do you recommend? He does not tolerate Haldol, Ativan or Risperdal, it makes him very angry and combative and he has problems breathing. These meds have resulted in him being take to the ER and resuscitated. He is currently on Nameda two times a day and Aricept 10 once a day. He also takes 150 mg Seroquel throughout the day, 25 mg at 10 a.m., 25mg at 3 p.m. and 100 mg at 8 p.m. He also is on citalopram once a day. — Valley, Akron, OH

A. Resistance to personal care is unfortunately common, especially when so many people he may not recognize are helping with such intimate personal tasks. The best non-drug approaches include paying attention to comfort and privacy, slowing down and explaining step by step what you are doing, not why you are doing it. There are great suggestions in a 2012 downloadable booklet. Another helpful book and video is titled “Bathing Without a Battle.”

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~ by Butch on November 24, 2012.

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