U.S. neurologists contacted by Alzforum found the data interesting, but expressed differing opinions. They agreed that AD is sometimes misdiagnosed, but suggested that this is most likely to occur in a primary care setting. Primary care physicians may not have enough time to do a thorough evaluation, may be less familiar with the disease, or may not have access to diagnostic tools such as MRI scans, said Gad Marshall at Brigham and Women’s Hospital, Boston, Massachusetts. “The impression of specialists and tertiary referral clinics is that diagnosis is reasonably accurate,” agreed Russell Swerdlow at the University of Kansas Medical Center in Kansas City.

While commentators agreed that a diagnosis of AD is usually made late in the course of the disease, they pointed out that this has few consequences for treatment. “Regardless of at what point we diagnose the disease, we simply don’t have effective treatments,” Swerdlow said. Current drugs such as cholinesterase inhibitors are effective only for mild to moderate AD, and do not slow disease progression. “We have no treatment for mild cognitive impairment or presymptomatic people,” said Lawrence Honig at Columbia University in New York City. To Honig’s mind, the main problem with late diagnosis is that unrecognized symptoms of dementia may lead people to behave inappropriately and cause financial, work, or family problems. Knowing a patient’s diagnosis can help families cope and know what to expect. In the future, however, early diagnosis might become much more important. “The whole situation will change once we have a disease-modifying treatment,” Honig said, expressing a common view.

Most physicians surveyed also believe there is a social stigma surrounding an AD diagnosis. Stigma is associated with social isolation, feelings of helplessness, shame, and loss of personal freedom, the respondents said. Cultural differences showed up, with Japanese physicians rating stigma as a lower concern than did doctors worldwide, and French doctors listing it as a higher concern. Marc Wortmann, executive director of the umbrella group Alzheimer’s Disease International (ADI), joined the Lilly press conference to note that ADI will release their World Alzheimer Report 2012, which focuses on stigma, on 21 September. “Many people with dementia and their family carers hide or conceal [the patient’s] diagnosis because of stigma,” Wortmann said.

The neurologists Alzforum spoke to believe stigma is an issue, but less so than in the past. “I think that has changed for the better in the last few years in the U.S. There is more awareness of this condition,” Marshall said. “The stigma is gradually being lifted, but the fear is still very much there.” Swerdlow agreed, “I don’t believe the stigma is overpowering. It is trumped by a desire to know what is going on and what can potentially be done to help.” Greater awareness of AD is important, the scientists said. “Hopefully this [survey] will be used to better educate those involved in the diagnosis and management of AD patients,” Swerdlow said.

In a press release, Lilly representatives said they intend to work with ADI to develop educational resources that will help physicians, patients, and caregivers communicate more effectively. Lilly recently brought to market Amyvid, the first FDA-approved agent for amyloid brain scans, which could aid in early diagnosis of Alzheimer’s as distinct from non-amyloid causes of cognitive impairment. The survey comes as the company is ramping up production of Amyvid and a lobbying effort is underway in favor of insurance coverage of amyloid scans (see ARF related news story; ARF news story). In August, Lilly announced that its amyloid-targeting drug solanezumab failed to meet its primary clinical endpoints in Phase 3 trials, but hinted at a possible modest slowing of cognitive decline in participants with mild AD (see ARF related news story).—Madolyn Bowman Rogers.