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August 4th, 2010
03:24 PM ET
Proposed guidelines for diagnosing Alzheimer’s updated
Experts from the Alzheimer's Association and the National Institutes on Aging have proposed the first changes in more than 25 years to update diagnostic recommendations for Alzheimer’s disease. "These criteria will serve us in finding the kind of diagnostic tools and interventions that will help treat people in the earliest stages of the disease and avoid the severe symptoms that are so debilitating," says William Thies, chief medical and scientific officer for the Alzheimer's Association. The current guidelines have not been updated since 1984. Now, there are several advances making headway, and the panel wants to address shortcomings and provide clinicians with new guidelines. The use of biomarkers was among the top concerns. The panel did not recommend the use of biomarker exams in clinical settings, citing many variables that can alter the tests, a lack of standardization for administering them and the uncertainty about whether or not an individual with abnormal brain matter will actually develop Alzheimer’s disease in the future. “We think that ultimately biomarker tests will help us be able to identify individuals with Alzheimer’s disease” says Marilyn Albert, who chaired the panel’s workgroup on mild cognitive impairment. For now though, she says they are not ready to be used by clinicians in the field. The panelists also updated the framework for researchers to be able to study people with “preclinical AD,” a term they use to refer to individuals, particularly those with a family history, who may have developed amyloidal matter in the brain but have not developed symptoms of Alzheimer’s. "Understanding the earlier stages may represent the best chance for treatment prior to symptoms becoming present," explained Dr. Reisa Sperling, of Brigham and Women's Hospital. “We want to be able to monitor a change from one's baseline over time." To help recruit study participants who may not have previously been considered for research and younger generations who are concerned because of a family history, the Alzheimer’s Association began the Trial Match website to point consumers towards ongoing clinical trials. The new recommendations were initially presented at the annual International Conference on Alzheimer's Disease in July, and the panel has been accepting comments on their website. Comments will end this month, and the recommendations will be peer-reviewed by a medical journal. Critics have expressed concerns that the new recommendations could lead to more people being diagnosed, and that ultimately drug companies would benefit from the changes. [Read more here: How Alzheimer's gets diagnosed may change]. However, the panel says that’s not what they want to happen. “The goal of these criteria was to provide clinicians with a foundation for what they could do in the community," Albert says. "The last thing you want to do is tell someone they have Alzheimer's dementia when they don't."
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Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.
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In my own family I have watched the slow but insidious worsening of a mental, Alzheimer's like condition...and how the patient was able to cover up and kept all those symptoms from the physicians attending....it was never diagnosed or treated until a family memeber kept a journal of day to day emotional, physical and mental challenges of the person. In my opinion, the family knows more than the medical people because they are in more constant contact. Their input is to be more valued and respected to arrive at the correct clinical outcome. The simple "test" for dementia isn't enough to define the mental and emotional worsening I have observed first hand. My family member is still not being treated for her worsening condition.
I think it's important to update the diagnosing of this disease. But I do not see any framework with in the new recommendations that would ensure a person is not diagnosed with it when in fact it is the symptoms of another ailment.
My wife and I care for her mother, whom was diagnosed with Alzheimers 6 years ago. This diagnosis was made based on the medical history of her family, with no other investigation pursued. Five years later, we switched doctors. The new doctor was old school, and firmly believed in eliminating other ailments before proclaiming the disease.
It turns out she had what used to be called what used to be referred to as 'water on the brain'. The term for it escapes me at this time, but it's a really longwinded name. Placing a stint in her head to drain the fluid that her brain was literally DROWNING in would have resulted in a complete recovery, had it been caught back when she was first brought in with symptoms that resembled Diagnosis.
If you or a loved one is at the beginning stages of 'forgetfulness' and feel dementia is the culprit. Please ensure that your Neurologist is not as lazy as ours was. Ensure they run all the tests necessary to eliminate OTHER treatable ailments.
I have to apologize, the new 'biomarkers' do include a step that would have helped my mother-in-law be well today.
My great-grand father, my grandmother and father all had 'bad' memories and all died and considered just 'not' in their right mind at the end (last year to years). My dad's doctor refused to even discuss the option because he had known him a year or so and hadn't noticed anything. My sister and I pleaded with the doctor, due to our family history and because most people don't keep the telephone in the freezer or trunk of the car. (Just a couple of hundreds of examples) We turned everywhere for help and got NONE! The last six months of our dad's life was cruel to him and us. I recently was at a Neurologist for another reason and mentioned my concern for myself and sister, we are 46 and 49. He told me that I was to smart to let that happen to me!!! I live daily with the fear of being a burden to my son and family and NO ONE will help or listen.
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