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
(@holly153)

Raising Awareness

Ms. Holly

The rural communities and health car professionals and need to work together better to have a understanding of the Alzheimer

and dementia diseases and behaviors to gain better care and facilities that do not put all levels of disease in one place !!!

A good example of a facility that has this in place is the Masonic home in Elizabeth town, PA>

(@richardperkinspdx)

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 »

Raising Awareness

Address potential concerns regarding the disappointing outcomes of past trials

To add to the excellent ideas presented thus far, I would suggest considering the possibility that some prospective participants may have lost hope, having seen the outcomes of prior trials. I would not be contributing this idea if I agreed with that point of view; however, I think it may be important to acknowledge that disappointments have occurred, and provide an explanation of why it is believed that future trials... more »

(@peterj)

Raising Awareness

Hodges' Care Domains Model

Hodges' model is a generic framework that facilitates problem solving, assessment and reflection. Developed in healthcare the model can help support person-centered care, holistic care - that is paying attention to mental AND physical health, the need for integrated care. The model can be used by one person or a group on a flipchart, paper... for brainstorming. The model's four care domains includes a POLITICAL and SOCIAL... more »

(@johnarnold)

Raising Awareness

Communication is not persuasion.

How to raise awareness about and encourage participation in Alzheimer's research? Go “old school” with advertising and communications efforts. Whether it’s selling consumer products and services or trying to recruit people into clinical trials, the focus today has been on using “big data”. Individuals are now profiled to the nth-degree. Because of this, there has been a stampede of government agencies and brands to... more »

(@uaauckmcc)

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.

(@eterril)

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 »

(@natlefforts)

Raising Awareness

Work with employer/ee organizations to convey the importance of participation in research

Discuss with employers and employee leadership how participation in or support of participants in clinical studies can be encouraged by an organization’s policy, including providing paid time off for employees who might become study participants or study partners. Ensure protections against discrimination for employees if/when they participate in clinical studies or serve as study partners for age-related cognitive function,... more »

(@prospectorky)

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 »

(@natlefforts)

Raising Awareness

Create global recruitment villages

Facilitate the emergence of a federation of self-organized online recruitment communities (i.e., digital villages, disease forums). Develop effective partnerships between research centers and social media companies. Machine-learning algorithms could use social media data to identify potential research participants and concerned family members, with great care regarding privacy concerns and garnering proactive consents.... more »