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"The phrase you often hear is that the 'Big A' (Alzheimer's) has replaced the 'Big C' (cancer)" as a major source of fear, said Dr. Jason Karlawish, a University of Pennsylvania ethicist specializing in dementia issues.
Recent guidelines by the U.S. National Institute on Aging and the Alzheimer's Association say these tests should be used only in research until they have been standardized and validated as useful and accurate tools.
A researcher using one of these tests, such as a spinal fluid check for a substance that may predict Alzheimer's risk, has no obligation to disclose the results to a patient until there is a meaningful treatment for the disease, Karlawish argued at the conference.
The more symptoms a patient has, the more justified it is to help understand what is known about possible reasons, he said.
Lynda Hogg of Edinburgh, Scotland, is very glad her doctors diagnosed her Alzheimer's in 2006. She is doing exceptionally well on one of the existing drugs and is in a clinical trial for an experimental one she hopes will help her and help advance knowledge in the field.
At a discussion connected with the conference, she said the early diagnosis helped her get financial and legal matters in order and serve on the Scottish Dementia Working Group and the board of Alzheimer's Disease International.
"I am certain involvement keeps me focused and involved in society," she said.
The Alzheimer's Association says early diagnosis and evaluation can bring the following benefits:
Treatment of reversible causes of impairment.
Access to drugs that help treat symptoms.
Inclusion in clinical trials that give expert care.
Avoiding drugs that can worsen cognition.
Letting others know of a need for help managing medicines and daily life.
Easing anxiety about the cause of symptoms.
Access to education, training and support services.
The ability to plan for the future.
Lesher, the woman from Pennsylvania, wishes she had a clearer picture of what lies ahead for her.
"Not being able to get diagnosed is the must frustrating thing in the world," she said.
National Institute on Aging:
Alzheimer's Association: http://www.alz.org/
National Alzheimer's Project Act:
Copyright 2011 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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