Survey: Early Diagnosis, Realistic Expectations Needed for Alzheimer’s

PARIS – Concerns that individuals with early symptoms of Alzheimer’s disease may avoid or delay seeking medical care because of a perceived lack of effective therapies or other worries may be largely unfounded.

In fact, expectations about just what can be done for those who receive an Alzheimer’s disease diagnosis may be too high, according to the findings of a recent five-country telephone survey presented at the Alzheimer’s Association International Conference.

In all, 85%-95% of the 2,678 adults aged 18 and older from France, Germany, Poland, Spain, and the United States said they would see a doctor if they were experiencing confusion or memory loss, 52%-71% said they believe that an effective treatment currently exists or will soon be available, and 38%-59% said they believe a reliable test for early Alzheimer’s disease currently exists, Robert Blendon, Sc.D., reported during a press briefing at the conference.

If anything, the findings suggest that clinicians will have to temper the expectations of those who come in seeking answers about their symptoms, said Dr. Blendon, professor of health policy and political analysis at the Harvard School of Public Health, Boston.

Alzheimer’s disease organizations in many countries, including the United States, are working to promote early diagnosis. One purpose of this random telephone survey, which was a joint project of the Harvard School of Public Health and Alzheimer Europe, was to determine if the public would respond to such campaigns. The investigators also wanted to elucidate cultural differences regarding views on Alzheimer’s disease, he said.

In addition to the somewhat surprising responses regarding whether or not they would seek a diagnosis, the majority (51%-78%) of respondents from each country also said that if an accurate preclinical diagnostic test existed, they would seek a diagnosis.

Respondents expressed deep overall concerns about developing Alzheimer’s disease. In four of the five countries, Alzheimer’s ranked second after cancer as the most feared disease. In Poland, it ranked third after cancer and heart disease.

More than half of the respondents from each of the countries (54%-77%) said they had known someone with the disease, and nearly 30% said they had personal experience with a family member who had Alzheimer’s disease.

The findings suggest that if educational campaigns were undertaken to persuade the public about seeking care for symptoms that might be associated with Alzheimer’s disease, a large proportion would do so, Dr. Blendon said.

It would be important, however, to address what appear to be unrealistic expectations about the availability of diagnostic testing and effective therapies at this time. A particular leadership challenge for any public education campaign would be to promote early diagnosis while providing positive reasons for seeking a diagnosis (such as allowing those with early Alzheimer’s disease to be involved in planning their long-term care), given the current absence of disease-modifying treatment, he said.

The level of fear about Alzheimer’s disease that is apparent from this survey is evidence of the urgency with which the public wants the matter addressed through research and government support, Dr. Blendon noted.

The majority of respondents (86% from France, 68% from Germany, 75% from Poland, 83% from Spain, and 67% from the United States) expressed strong support for increasing government spending for research on new treatments, he said.

The study was supported by a grant from Bayer Corp. to Alzheimer Europe. Dr. Blendon did not report any disclosures.

PARIS – Concerns that individuals with early symptoms of Alzheimer’s disease may avoid or delay seeking medical care because of a perceived lack of effective therapies or other worries may be largely unfounded.

In fact, expectations about just what can be done for those who receive an Alzheimer’s disease diagnosis may be too high, according to the findings of a recent five-country telephone survey presented at the Alzheimer’s Association International Conference.

In all, 85%-95% of the 2,678 adults aged 18 and older from France, Germany, Poland, Spain, and the United States said they would see a doctor if they were experiencing confusion or memory loss, 52%-71% said they believe that an effective treatment currently exists or will soon be available, and 38%-59% said they believe a reliable test for early Alzheimer’s disease currently exists, Robert Blendon, Sc.D., reported during a press briefing at the conference.

If anything, the findings suggest that clinicians will have to temper the expectations of those who come in seeking answers about their symptoms, said Dr. Blendon, professor of health policy and political analysis at the Harvard School of Public Health, Boston.

Alzheimer’s disease organizations in many countries, including the United States, are working to promote early diagnosis. One purpose of this random telephone survey, which was a joint project of the Harvard School of Public Health and Alzheimer Europe, was to determine if the public would respond to such campaigns. The investigators also wanted to elucidate cultural differences regarding views on Alzheimer’s disease, he said.

In addition to the somewhat surprising responses regarding whether or not they would seek a diagnosis, the majority (51%-78%) of respondents from each country also said that if an accurate preclinical diagnostic test existed, they would seek a diagnosis.

Respondents expressed deep overall concerns about developing Alzheimer’s disease. In four of the five countries, Alzheimer’s ranked second after cancer as the most feared disease. In Poland, it ranked third after cancer and heart disease.

More than half of the respondents from each of the countries (54%-77%) said they had known someone with the disease, and nearly 30% said they had personal experience with a family member who had Alzheimer’s disease.

The findings suggest that if educational campaigns were undertaken to persuade the public about seeking care for symptoms that might be associated with Alzheimer’s disease, a large proportion would do so, Dr. Blendon said.

It would be important, however, to address what appear to be unrealistic expectations about the availability of diagnostic testing and effective therapies at this time. A particular leadership challenge for any public education campaign would be to promote early diagnosis while providing positive reasons for seeking a diagnosis (such as allowing those with early Alzheimer’s disease to be involved in planning their long-term care), given the current absence of disease-modifying treatment, he said.

The level of fear about Alzheimer’s disease that is apparent from this survey is evidence of the urgency with which the public wants the matter addressed through research and government support, Dr. Blendon noted.

The majority of respondents (86% from France, 68% from Germany, 75% from Poland, 83% from Spain, and 67% from the United States) expressed strong support for increasing government spending for research on new treatments, he said.

The study was supported by a grant from Bayer Corp. to Alzheimer Europe. Dr. Blendon did not report any disclosures.

PARIS – Concerns that individuals with early symptoms of Alzheimer’s disease may avoid or delay seeking medical care because of a perceived lack of effective therapies or other worries may be largely unfounded.

In fact, expectations about just what can be done for those who receive an Alzheimer’s disease diagnosis may be too high, according to the findings of a recent five-country telephone survey presented at the Alzheimer’s Association International Conference.

In all, 85%-95% of the 2,678 adults aged 18 and older from France, Germany, Poland, Spain, and the United States said they would see a doctor if they were experiencing confusion or memory loss, 52%-71% said they believe that an effective treatment currently exists or will soon be available, and 38%-59% said they believe a reliable test for early Alzheimer’s disease currently exists, Robert Blendon, Sc.D., reported during a press briefing at the conference.

If anything, the findings suggest that clinicians will have to temper the expectations of those who come in seeking answers about their symptoms, said Dr. Blendon, professor of health policy and political analysis at the Harvard School of Public Health, Boston.

Alzheimer’s disease organizations in many countries, including the United States, are working to promote early diagnosis. One purpose of this random telephone survey, which was a joint project of the Harvard School of Public Health and Alzheimer Europe, was to determine if the public would respond to such campaigns. The investigators also wanted to elucidate cultural differences regarding views on Alzheimer’s disease, he said.

In addition to the somewhat surprising responses regarding whether or not they would seek a diagnosis, the majority (51%-78%) of respondents from each country also said that if an accurate preclinical diagnostic test existed, they would seek a diagnosis.

Respondents expressed deep overall concerns about developing Alzheimer’s disease. In four of the five countries, Alzheimer’s ranked second after cancer as the most feared disease. In Poland, it ranked third after cancer and heart disease.

More than half of the respondents from each of the countries (54%-77%) said they had known someone with the disease, and nearly 30% said they had personal experience with a family member who had Alzheimer’s disease.

The findings suggest that if educational campaigns were undertaken to persuade the public about seeking care for symptoms that might be associated with Alzheimer’s disease, a large proportion would do so, Dr. Blendon said.

It would be important, however, to address what appear to be unrealistic expectations about the availability of diagnostic testing and effective therapies at this time. A particular leadership challenge for any public education campaign would be to promote early diagnosis while providing positive reasons for seeking a diagnosis (such as allowing those with early Alzheimer’s disease to be involved in planning their long-term care), given the current absence of disease-modifying treatment, he said.

The level of fear about Alzheimer’s disease that is apparent from this survey is evidence of the urgency with which the public wants the matter addressed through research and government support, Dr. Blendon noted.

The majority of respondents (86% from France, 68% from Germany, 75% from Poland, 83% from Spain, and 67% from the United States) expressed strong support for increasing government spending for research on new treatments, he said.

The study was supported by a grant from Bayer Corp. to Alzheimer Europe. Dr. Blendon did not report any disclosures.