Research shows that it is possible to slow the rate of cognitive decline as people age and lower the risk of developing dementia through public health approaches and lifestyle changes such as diet and exercise. This is a crucial part of national efforts to reduce the number of Americans who develop Alzheimer’s and related dementias. New research from UsAgainstAlzheimer’s A-LIST finds near universal acceptance of the importance of taking care of brain health.
Unfortunately, it also finds that people do not feel informed about the best way to do that, with just 23 percent of participants saying they feel very knowledgeable about how to improve their brain health.
These results show that the public is hungry to be educated about how to take care of their brain health. But many people are struggling to find resources and information that could lead to better long-term brain health and possibly Alzheimer’s prevention. And they show a need for doctors, nurses and other providers to regularly discuss brain health with patients, and for a national goal to prevent Alzheimer’s.
Survey Encouraging, But Gaps in Knowledge Remain
UsAgainstAlzheimer’s A-LIST is an online registry of nearly 10,000 people living with Alzheimer’s disease or related dementias (ADRD), current and former caregivers and people interested in brain health. Members participate in online surveys as part of the What Matters Most Insights study to share and scientifically validate the experience of living with this disease and caring for a loved one.
Just 23 percent of respondents said they feel very knowledgeable about how to improve their brain health.
Fully 81 percent of more than 1,400 respondents to this Brain Health—What Matters Most survey report that they are taking steps that contribute to brain health. In particular, respondents who identified as “interested in brain health” reported engaging in multiple activities known to help maintain brain health (including exercise, reading, no/low smoking and alcohol intake). Those diagnosed with MCI or dementia indicated less likelihood to engage in activities to maintain brain health, especially reading, eating a healthy diet and maintaining a healthy body weight.
Participants reported key activities that are good for brain health including: reading (84 percent), exercising (80 percent), getting enough sleep (71 percent), eating a brain healthy diet (69 percent), maintaining healthy body weight (66 percent), socializing regularly (66 percent), doing puzzles (56 percent), managing health conditions (54 percent), managing stress (53 percent) and playing brain games (51 percent). Respondents also report not smoking (84 percent), and moderated alcohol use (79 percent).
Importantly, respondents cited a number of obstacles to taking care of their brain health. More than a quarter (28 percent) of all respondents were unsure what works and what is a gimmick; others said they’re too overwhelmed with other things (24 percent), too tired (18 percent) and no time/too busy (16 percent). About one of four (27 percent) respondents cited no obstacles to caring for brain health.
Communication on Brain Health Key
When it comes to getting information about brain health, respondents said they relied on news articles (69 percent), internet searches (63 percent) and healthcare providers (47 percent). In addition, 42 percent of current caregivers sought support from caregiver groups. At least 16 percent of diagnosed individuals and 12 percent of current caregivers sought support from patient support groups. And diagnosed individuals read less news for information (39 percent) than other respondents (73 percent to 79 percent by category).
Fewer than half of survey respondents talked about brain health with their provider.
While 72 percent of the A-LIST population that identified as “interested in brain health” indicated they spoke with family members about brain health in general, fewer (42 percent) of those respondents spoke with a physician about their own brain health. In the overall respondent group that said they talked to their healthcare providers about brain health, just 26 percent received relevant information to take home. Respondents who spoke with a physician were more often those with a diagnosis or their caregivers.
Of those respondents who did not consult a physician about brain health, 43 percent said the reason is that they do not have a brain health problem; 40 percent never thought to discuss it, and 35 percent said their providers never brought it up. Only half of all survey respondents said they feel extremely confident raising the topic of memory or brain health with their healthcare provider.
The federal Advisory Council on Alzheimer's Research, Care and Services recently recommended that the National Alzheimer’s Plan be updated to include a focus on risk reduction and to accelerate efforts to reduce risk and intervene early in clinical care.
Together with nearly 200 other organizations and experts, UsAgainstAlzheimer’s is calling on U.S. Department of Health and Human Services Secretary Xavier Becerra to adopt the Council’s recommendation. A more concerted focus on risk reduction would help to meet a clear demand for more and better information about brain health by both patients and providers.
Survey Methodology: The survey, taken September 17–27, 2021, by the UsAgainstAlzheimer’s A-LIST, received 1,435 responses overall from people living with Alzheimer’s or another dementia (n=93), current and former caregivers (n=217/262), people with a significant likelihood of developing the disease (n=458) and those interested in brain health (n=405). This research is overseen by an Institutional Review Board (IRB).
Virginia Biggar is Executive Director of Communities and A-LIST Program Director at UsAgainstAlzheimer’s. Theresa L Frangiosa, MBA, is Principal Investigator for the A-LIST What Matters Most Insights Study. Kelly O’Brien is Executive Director of the Brain Health Partnership at UsAgainstAlzheimer’s.