New Survey Finds That Although Understanding of Alzheimer’s Disease is Limited to Personal Experience, Respondents Were Interested in Actively Taking Part in Early Detection and Clinical Trials
WASHINGTON, March 20, 2019 – Today, the Alliance for Aging Research (the “Alliance”) released new survey data that reveals the vast majority of people want to know if they are at risk of Alzheimer’s disease (AD) and are eager to take part in early detection, clinical trials, and discussions with their medical care providers. The survey, conducted by Avalere Health and sponsored by the Alliance, sought to understand general understanding of diagnosing AD early. The findings of the study will inform strategic and impactful educational messaging and outreach strategies with the overarching goal of increasing awareness of AD among all Americans.
The survey was conducted with 2,000 adults from across the United States. Of those surveyed, 85 percent considered understanding their risk of Alzheimer’s to be very important. Respondents also expressed great interest in participating actively in the early diagnosis process, including proactively getting a test or scan for early signs of AD and enrolling in relevant clinical trials in hopes of advancing treatment research. For a detailed look into the survey methodology and findings, click here.
“These results demonstrate that people want to know their risk for Alzheimer’s disease as early as possible, they wanted to be diagnosed as early as possible, and they see the potential to participate in a research study as a benefit of earlier diagnosis,” said Susan Peschin, MHS, President and CEO of the Alliance for Aging Research. “We know medical providers often hesitate to discuss memory issues with patients due to a lack of effective treatment options, or cure, and half of dementia cases are missed as a result. But these survey results show the American public wants to know, have time to prepare, and get involved in research. This requires a significant shift in thinking by the medical community away from avoidance and toward dialogue, diagnosis, and help with research options.”
Another key finding of the survey was that understanding of AD was limited to personal experience (specifically. through a family member or loved one with the disease) and respondents felt slightly higher uncertainty, worry, and fear of getting the disease themselves as a result. A little more than half of respondents said they had a family member or loved one with AD, while 38 percent identified as a caregiver for someone with AD.
The survey also found that the level of understanding and knowledge of Alzheimer’s disease was lower among less educated and lower socioeconomic respondents. They are also less likely to be “treatment seekers” and their primary care physicians may be disconnected from the clinical trial infrastructure. This lower awareness level is significant because AD risk is influenced by education level.
The results highlight the American public’s interest in understanding their risk for AD, getting diagnosed and involved in research as early as possible, which runs counter to common nihilistic attitudes to AD in the medical community. By using carefully developed and thoughtful messaging about early detection in order to increase understanding of the disease, especially one’s risk factors, signs and symptoms — and providing information about available research studies, the medical community, health advocates, and others can help to educate and empower patients to take active part in their care.
The survey was fielded telephonically in the summer of 2018 by Avalere Health to a nationally representative sample of 2,000 adults, age 18+ on behalf of Alliance for Aging Research.
The survey was made possible by Biogen Inc., Eli Lilly and Company, and Janssen Pharmaceuticals, Inc.
For more information about the Alliance for Aging Research’s work to educate and advocate on behalf of those with Alzheimer’s disease, click here.
About the Alliance for Aging Research
The Alliance for Aging Research is the leading nonprofit organization dedicated to accelerating the pace of scientific discoveries and their application to vastly improve the universal human experience of aging and health. The Alliance believes advances in research help people live longer, happier, more productive lives and reduce healthcare costs over the long term. For more than 30 years, the Alliance has guided efforts to substantially increase funding and focus for aging at the National Institutes of Health and Food and Drug Administration; built influential coalitions to guide groundbreaking regulatory improvements for age-related diseases; and created award-winning, high-impact educational materials to improve the health and well-being of older adults and their family caregivers. For more information, visit www.agingresearch.org
Vice President of Communications