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
(@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 »

Voting

5 votes
(@kthlncnnll)

Raising Awareness

Increase Public Education and Awareness

Clinical trials are foreign to patients and caregivers. More education about the trials, what it means to be involved, privacy issues and ability to exit the trial at any time needs to be communicated more directly to the desired sample subjects. I am a volunteer Alzheimer's Association Community Educator. I always briefly discuss the trials and potential benefit of involvement. However, it is then left to the person ...more »

Voting

17 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.

Voting

10 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

Voting

13 votes
(@podell2)

Raising Awareness

Identifying Promising but Under-Researched Intervnetions for Diet and Nutrition

Many non-pharmacological interventions have theoretical justification and attractive but very limited clinical data suggesting benefit for cognition. Most of these are relatively safe. But, very little research in these areas get funded. So, that even very encouraging pilot studies rarely get replicated. In contrast, the public has immense interest in these areas e.g. see huge following of Dr. Oz, Dr. Perlmutter, etc. ...more »

Voting

28 votes
(@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 »

Voting

4 votes
(@natlefforts)

Raising Awareness

Provide logistical and financial support to physicians for communication about dementia and research

Examine ways to provide logistical and financial support to primary care physicians and their practices so that assessments, discussions, and care of patients at risk for dementia or with cognitive impairment or dementia can be enhanced. Work with the National Quality Forum and Center for Medicare and Medicaid Services (CMS) to see how to embed facilitating research recruitment as care quality criteria within ongoing, ...more »

Voting

12 votes
(@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 »

Voting

29 votes
(@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 »

Voting

6 votes
(@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>

Voting

8 votes
(@natlefforts)

Raising Awareness

Work with healthcare plans to build awareness of the importance of recruitment into clinical trials and studies.

1) Encourage healthcare systems and health insurance plans to use clinical trial awareness initiatives, evidence-based brain health resources and partnerships as an incentive and benefit for their beneficiaries/clients and subscribers. 2) Engage the Centers for Medicare and Medicaid Services (CMS) as a partner, examining such approaches as including clinical studies participation opportunities as part of the Star Rating ...more »

Voting

33 votes