Raising Awareness

Raising Awareness

How can we raise awareness about and encourage participation in Alzheimer's research?

Goal: Empower people from diverse communities -- those with Alzheimer’s disease and related dementias, their families and caregivers, healthy adults, clinicians, businesses, workers, and the general public -- to participate in research.

Ideas in this area might address:

  • What messages and education about clinical studies and research participation are needed to engage a variety of audiences
  • Where it would be helpful to deliver messages and education
  • How to best connect/match participants with research
  • How to better use technology and social media to facilitate participation
  • How to engage health care professionals to inform patients about research participation
  • Role of funders, organizations, policymakers in implementing

Raising Awareness

Reach Out to Religious Groups

Form a plan to reach out to religious groups. Often these groups comprise altruistic, compassionate persons who want to make a difference in their communities and world, and who want to support organizations that also have that aim. Ask to speak to interfaith groups such as local Ministerial Alliance and Church Women United meetings. Ask to speak to individual denominational meetings (although I suspect the interfaith ...more »

Submitted by (@eterril)

Voting

6 votes

Raising Awareness

Feature a Celebrity Participant

Recruit a celebrity to complete a Trial Match Profile and use a slogan of "I Did It - You Can Too!" This will create interest and especially drive home the point that you do NOT have to have Alzheimer's or be of a certain age in order to participate in Trial Match

Submitted by

Voting

13 votes

Raising Awareness

Community-based Immersion

Partner with formal and informal community groups. Go to places where older adults tend to go, such as church, grocery stores, hair salons, coffee shops, etc. Ask the priest or pastor, or manager if you could speak for a few minutes about memory loss and research studies. Be a frequent visitor and make friends.

Submitted by

Voting

10 votes

Raising Awareness

Concise simple tool to funnel population specific open trials/ studies for physicians

Electronic updates and disease population specific information with simple tool for informing individual patient about potentially appropriate open studies and trials. If this tool could be integrated into healthcare systems electronic records tied to diagnostic codes, a family practice, internal medicine and or neurologist would be reminded at time of visit and simply print of a one page description of potentially ...more »

Submitted by (@rachel.pendexter)

Voting

10 votes

Raising Awareness

Increase Individual Genetic Risk Awareness in Population

Organizations like 23 and Me offer affordable genetic testing for late onset Alzheimer's. Due to family history, both my wife and I took these test due to family history. We also self reported a very extensive personal health and lifestyle history, helping to create a significant database of possible contributing factors to the emergence or progression of the disease. Our goals were to increase awareness so as to better ...more »

Submitted by (@richardperkinspdx)

Voting

29 votes

Raising Awareness

Virtual Tours

I recently participated in a Virtual Tour at a local ALZ office which was amazing! My husband was diagnosed 4 yrs ago at age 59 and I have been reading and researching plus he joined a clinical trial in Nashville and when we decided it was time to move back to TX they would not transfer him and the result to anyone in TX so he could continue. There were 2-3 places available in TX so this is all about the drug company ...more »

Submitted by (@howardpam51)

Voting

11 votes

Raising Awareness

Create & maintain database of patients/family members

Create and maintain a database of Alzheimer's patients and their family members. This will enable researchers to not only contact family with important research results but also to have the ability to follow this disease on a massive scale. Then maybe scientists and researchers will have a better opportunity to find trial participants with documented genetic links to this disease.

Submitted by (@uaauckmcc)

Voting

19 votes

Raising Awareness

Let's hear from the researchers on television!

Anyone, who has experienced the insult of Alzheimers, firsthand, would rather hear from doctors on the front lines, than from anyone else for their loved one's care. Researchers could use surrogates on television to relay their trial ideas for possible Alzheimers prevention, treatment or screening opportunities. That would, at least, drive interest toward, current, trial opportunities, given the legitimacy. Researchers ...more »

Submitted by (@prospectorky)

Voting

14 votes