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:
"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.