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Lewy Body Dementia: Less Common than Alzheimer’s, Still Devastating

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Almost everyone who reads the AgingOptions blog or listens to our radio program knows something about Alzheimer’s disease, and many of us have had personal experience with a loved one suffering from it. Experts estimate that nearly five and a half million Americans have Alzheimer’s disease and that number is expected to rise dramatically in the years ahead.

But there’s another, less common form of dementia that in many ways mimics Alzheimer’s disease and is often mistaken for it. It’s called Lewy body dementia. This lesser-known cousin of Alzheimer’s affects an estimated 1.4 million Americans, and it often goes misdiagnosed because of its odd array of symptoms. But because Lewy body dementia responds differently from Alzheimer’s disease to commonly prescribed medications, getting a correct diagnosis is important.   That’s why we found this recent article on the website of the Mayo Clinic extremely insightful, and we hope you’ll take the time to read it – especially if someone close to you is wrestling with severe cognitive decline.

Lewy body dementia, like Alzheimer’s disease, is a brain disease that gets progressively worse over time. Experts say it’s caused by an abnormal protein, called synuclein, that becomes deposited in nerve cells and affects nerve processes. These deposits are called “Lewy bodies,” named after the physician who first identified them. In the Mayo Clinic article, author Dr. Neill Graff-Radford explains that “Lewy bodies are found in the deep structures of the brain that control movement, as well as in the middle and outer structures involved in emotion, behavior, judgment and awareness.”  The disease progresses over several years but the effects can vary greatly from patient to patient.

What are some of these symptoms? Because many people suffering with Lewy body dementia also have significant Alzheimer’s disease, the Mayo Clinic article points out that the symptoms seem to mimic Alzheimer’s – things like memory loss and difficulty with names and places. Those with Lewy body dementia may also experience tremors such as the ones occurring with Parkinson’s disease, sometimes before the dementia becomes obvious and sometimes after. But one of the major distinctions of Lewy body dementia among some sufferers is the early onset of hallucinations, often within the first year after diagnosis.

In researching this article, we discovered this very recent profile of a woman in Lincoln, Nebraska, who had been diagnosed with Lewy body dementia just nine months ago. The article describes in vivid detail how this 63 year old woman has been emotionally paralyzed and left virtually housebound by a worsening series of vivid hallucinations.  As her doctor described it, her illness not only brings on severe, threatening hallucinations but is also accompanied by “vast fluctuations in cognition” and mental symptoms that come and go. “With Lewy body dementia, a patient may not recognize you one day, and the next have total recall of extended family members,” the article reported.

Another common symptom of Lewy body dementia is significant difficulty sleeping.  As the Mayo Clinic describes it, “People who have Lewy body dementia also may experience a sleep condition known as REM sleep behavior disorder, in which people act out their dreams while they sleep.” This is obviously disconcerting to spouses and family members. The Mayo Clinic article adds that Lewy body dementia sufferers “may have instability in their blood pressure and heart rate, and the body may have difficulty controlling body temperature and sweating.”

Is there any good news in all this? There are clinical trials currently underway (the woman featured in the Lincoln, Nebraska article is a participant) testing to see whether new drugs might reduce symptoms or slow the advance of Lewy body dementia, with a particular focus on reducing hallucinations and improving sleep. But at present there is no known cure and no approved therapies in the U.S. or Europe.  Still, because Lewy body dementia presents such an array of symptoms, correct diagnosis is imperative: for example, says the Mayo Clinic’s Dr. Graff-Radford, “In people who have Lewy body dementia, medications to improve motor function may make symptoms such as hallucinations worse, and medications used to combat dementia may increase Parkinsonism.” It’s not a cure if it makes the disease worse.

Whether you or a loved one are facing dementia or simply trying to plan for your health care needs as you age, we hope you’ll call us here at AgingOptions and allow us to refer you to a geriatric physician – a geriatrician – in your area. This is the health care professional you need to see, a doctor who understands the particular physical and emotional needs of aging patients. As for the rest of your retirement planning, we can help you there as well by showing you how all the facets of your retirement plan fit together like pieces of a puzzle. Along with your medical needs – helping you preserve your health – you need to take your housing desires into account, to make certain you’re living in the environment that’s right for you. In retirement, your finances will play a pivotal role, as will your legal affairs. Finally, unless your family is aware and supportive of your retirement plans, you could be heading for major family conflict in the future. An AgingOptions LifePlan is the one plan we know of that blends all these elements together: financial, legal, medical, housing and family.

If you’re ready to learn more, why not take a few hours and attend one of our free LifePlanning Seminars? There’s no obligation whatsoever – just bring your questions and prepare to have your eyes opened about a new approach to retirement security. For dates, locations and registration, click on this link – or call us during the week and we’ll gladly assist you. We hope to see you very soon at an AgingOptions LifePlanning Seminar.

(originally reported at and

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