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A diagnosis is commonly made as long as three years from the onset of symptoms. |
New research published in the Medical Journal of Australia (MJA) found patients or their families often waited two years after the onset of dementia symptoms before discussing them with a doctor. Even more startling, a diagnosis of Alzheimer's or another form of dementia was eventually made only after three years from the onset of symptoms.
Interviews of caregivers and related research were performed by Dr. Catherine Speechly and colleagues from the NSW and ACT Faculty of the Royal Australian College of General Practitioners' Projects, Research and Development Unit.
Dr. Speechly was dismayed by the results. She said, "The consequence of this delay is a lost opportunity for earlier medical and social interventions for patients and their families, and prolonged diagnostic uncertainty."
"The timeline we observed suggests that levels of daily functioning were substantially impaired well before a diagnosis was made or resources were used."
Ignorance, Denial & Stigma
Ignorance, denial and stigma conspire to delay the diagnosis, which can have a serious medical impact, since medications to slow the illness' progress are most effective in its early stages.
In an earlier survey conducted by the Alzheimer's Foundation of America, 57 percent of caregivers said an Alzheimer's diagnosis was delayed because either they were, or the person with the illness was, in denial about having the disease or feared the social stigma associated with it.
Another 40 percent of those surveyed reported "not knowing enough about the disease" as a reason for the delay in diagnosis.
Thirty-eight percent of those surveyed said the patient's resistance to seeing a doctor helped delay diagnosis, while 19 percent of caregivers admitted that they themselves didn't want to face the possibility that something was wrong. Spouses were three times more likely to give this as a reason than the children of the person with the disease.
"When people are afraid that someone is going to control their lifestyle, and think that there's no effective therapy, they don't want a diagnosis because it's like a sentence that's inescapable," said Greg Cole, associate director of the Alzheimer's Disease Research Center at California's UCLA David Geffen School of Medicine.
Benefits of an Early Diagnosis
Dr. Cole also highlighted how this denial keeps people from benefiting from medicines that, if taken in early stages of the disease, can slow Alzheimer's progress.
"These medicines are not optimal," Cole said. However, "they work better the earlier a person is treated."
Carol Steinberg, AFA's executive vice president, said another reason for earlier diagnosis is to involve the person with Alzheimer's in choices about care.
"When a person can participate himself in some of the decision-making regarding his long-term care, it helps relieve the concern and guilt of the caretakers," she said.
There is much a person can do if they receive an early diagnosis. Read more about it on this site's BASIC's section entitled, "After a Diagnosis: Planning for the Future."
In addition, three-quarters of the caregivers said tending to an Alzheimer's patient brought out inner strengths they didn't know they had, and nearly two-thirds (64 percent) said that they had become more compassionate as a result of caring for their loved one.
Community Education and Tools for Earlier Diagnosis
Dr. Speechly shared her most important conclusions from the new study.
"Community education about early symptoms and how and when to act on them could aid earlier recognition of symptoms and possibly earlier presentation to a health professional," Dr. Speechly said.
"Health professionals, especially GPs (General Practitioners), need to be able to address the needs of patients presenting with possible dementia symptoms and their families with sensitivity to accelerate diagnosis.
"GPs may also wish to consider earlier referral to a dementia specialist.
"As the incidence of dementia increases, it will become more important for our health system to have the tools to support earlier diagnosis to allow earlier clinical and social intervention."
MORE INFORMATION:
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BY:
Peter Berger, Editor, Alzheimer's Weekly
Reviewed for medical accuracy by
Dr. Boaz Ancselovic, MD, Geriatrician, Alzheimer's Weekly
SOURCES:
Medical Journal of Australia (MJA)
Alzheimer's Foundation of America, New York City, March 2006 survey.
Greg M. Cole, Ph.D., neuroscientist, associate director, Alzheimer's Disease Research Center, UCLA David Geffen School of Medicine, Los Angeles.
Week of November 9 - November 15, 2008
COPYRIGHT:
© 2008 Alzheimer's Weekly LLC. All Rights Reserved.
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