Denial, Stigma Delaying Alzheimer's Diagnoses

TUESDAY, March 21 (HealthDay News) -- Most diagnoses of Alzheimer's disease are delayed until more than two years after the first symptoms appeared, according to a survey released Tuesday.

Ignorance, denial and stigma are conspiring to delay the diagnosis, the researchers reported, which can have a serious medical impact, since medications to slow the illness' progress are most effective in its early stages.

The new survey, from the Alzheimer's Foundation of America (AFA), found that the first symptoms, including memory loss, confusion and repetitive speech, are noted -- but ignored or denied -- by either by the patients themselves or family members.

"There is not enough education and support available, and denial and the fear of stigma directly contribute to late diagnosis," said Eric Hall, chief executive officer of AFA, which sponsored the survey of 539 caregivers for patients with the disease.

Harris Interactive conducted the survey, which was underwritten by Forest Pharmaceuticals Inc. The company manufacturers Namenda, a drug used to help slow Alzheimer's.

An estimated one-in-10 people over the age of 65, and nearly half of those 85 or older, have Alzheimer's disease, according the AFA. The foundation estimates that by mid-century, more than 16 million Americans could have the disease. While certain medications may slow disease progress slightly, there is no cure for Alzheimer's disease.

In the study, 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.

Children were quicker to act than caregivers such as spouses, the survey found. The average time elapsed between onset of symptoms and an Alzheimer's diagnosis was pegged at one-and-a-half years when children were the primary caregiver, the researchers said.

Stigmas about Alzheimer's played a role in delaying diagnosis and treatment as well, the study found. Sixteen percent of caregivers surveyed said fear of stigma slowed diagnosis: 11 percent said the patient's own shame over the disease held them back from seeking help, while 5 percent of caregivers said they were the ones who feared the stigma. This latter group reported the longest time between onset of symptoms and Alzheimer's diagnosis -- six years.

Nine percent of caregivers said concerns about health care delayed diagnosis.

"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.

However, he said, this denial also 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, but do have efficacy in delaying institutionalization, delaying loss in the ability to perform the activities of daily living and have an impact on memory loss," Cole said. However, "they work better the earlier a person is treated," he added.

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.

To help promote early diagnosis, the AFA each year conducts National Memory Screening Day. In 2005, 20,000 people at 700 sites across the country participated in screening involving a standardized memory test. Approximately 10 percent of those tested were referred to doctors for further testing, Hall said. The next screening day will be held in October.

Alzheimer's is a fearsome disease, and nearly half (45 percent) of those surveyed said the emotional toll of seeing someone they loved lose their ability to function was the hardest part of the disease. In fact, it was far more troubling than dealing with the practical aspects of the disease, such as not having enough help (10 percent complained of this) and not being able to take care of their own needs (7 percent).

At the same time, 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.

Also, caretakers of parents with the disease were significantly more likely to report developing closer relationships with other family members than not -- 27 percent vs. 16 percent.

SOURCES: Eric J. Hall, chief executive officer, Alzheimer's Foundation of America, New York City; Carol Steinberg, executive vice president, Alzheimer's Foundation of America, New York City; Greg M. Cole, Ph.D., neuroscientist, Greater Los Angeles VA Healthcare System, and associate director, Alzheimer's Disease Research Center, UCLA David Geffen School of Medicine, Los Angeles; March 21, 2006, survey, Alzheimer's Foundation of America