Studies Show Changing Attitudes toward Alzheimer's

New research finds that the majority of patients would want to be tested for Alzheimer's, and that women bear most of the caregiving burden.

As the prevalence of Alzheimer’s disease continues to rise, awareness about the disease is increasing, along with a desire to seek testing at the first sign of any symptoms, according to research presented the Alzheimer’s Association International Conference (AAIC), held last month in Paris, France. Among the many topics explored at the conference were patient fears and expectations about the disease and the disproportionate role that women play in providing care.

Findings from a number of studies demonstrated a growing concern among patients about Alzheimer’s, a disease that now affects nearly 36 million people worldwide and is the second most feared condition after cancer.

“The overwhelming numbers of people whose lives will be altered by Alzheimer's disease and dementia, combined with the staggering economic burden on families and nations, make Alzheimer's the defining disease of this generation,” said William Thies, PhD, Alzheimer's Association Chief Medical and Scientific Officer, in a news release.

Recent studies have indicated that the disease starts developing at least a decade before symptoms appear, and many experts believe that earlier testing will play a key role in getting people treated and in preparing families for the burden.

In a telephone survey of 2678 adults aged 18 and older in the United States, France, Germany, Spain and Poland, researchers at the Harvard School of Public Health and Alzheimer Europe found that more than 85% of individuals said that if they were exhibiting confusion or memory loss, they would go to a doctor to determine if the cause of the symptoms was Alzheimer's disease. More than 94% say they would want the same for a family member.

Interestingly, the survey also showed that many respondents believe there is now an effective medical or pharmaceutical treatment to slow the progression of Alzheimer's disease and make the symptoms less severe. Between 38% and 59% said they believed there was a reliable test currently available to determine if a person is in the early stages of Alzheimer's disease.

"Many of the public have high expectations about the possibilities of treatment alternatives and medical testing. It is important for doctors to talk to patients about what treatment and testing options are or are not available," said Robert Blendon, ScD, Professor of Health Policy and Political Analysis from the Harvard School of Public Health.

Jean Georges, executive director of Alzheimer Europe, noted that although he is encouraged by the willingness to seek a diagnosed that was expressed in the survey, he believes that “better public education is needed. We need to address potentially unrealistic expectations about the availability of a definitive early test and effective treatment for the disease, while providing positive reasons for seeking a diagnosis in the absence of disease modifying treatments.”

Women at the center

Although Alzheimer’s is a disease that affects both genders, women seem to carry the bulk of the caregiver burden, according to findings from a multi-country survey.

Findings from the survey, which explored the impact of Alzheimer’s disease on women in France, Germany, Spain, Poland and the United States, included:

  • In all countries, women were more fearful of getting Alzheimer’s compared to other diseases, second only to cancer.
  • Women in all five countries were more concerned than men about a loved one developing Alzheimer’s.
  • Women in all countries were more likely than their male counterparts to be involved in day-to-day care.
  • In addition to providing the day-to-day care, women in France and Poland were significantly more involved in the decision-making and financial support of the person living with Alzheimer’s disease.
  • If those surveyed were to develop Alzheimer’s, most identified their spouse as the person who would be responsible for their primary care, with men identifying their wives 6-18 percent more often than wives identifying their husbands.
  • Women were more likely to rely on children or paid caregivers outside the family than men.

"With statistics consistently pointing to the fact that more women are living with Alzheimer's and caring for people with Alzheimer's, it is clear women are disproportionately affected by this disease," said Angela Geiger, chief strategy officer of the Alzheimer's Association, in a statement.

For more information, click on the links below and watch a video in which Melanie Belle of the CMS Federal Coordinated Health Care Office talks about improving Medicare and Medicaid for dual eligibles.

  • Coping With Alzheimer's Disease
  • Understanding Alzheimer's
  • Complexities of AD Require Extensive Counseling