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
(@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 »

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 »

(@leblancdb)

Raising Awareness

Facilitate Alzheimers CAREGIVER support group within faith based facility

As an advanced practice nurse trained in dementia symptoms, I am a volunteer facilitator of caregiver support groups. A local facility hosts our meetings in a peaceful Chapel with comfortable seating, tables, refreshments. I direct the conversation allowing each one to express their mental health issues and problem solve ADL issues. Participants care for their parents, spouses, and adult children. I refer each participant... more »

(@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 »

Raising Awareness

Media Blitz

My brother and myself were the caretakers of my mother. Who passed away from this awful disease last year. Additionally, I worked in a long term nursing facility for three years caring for many residents with memory issues. Therefore, the irradiation of this disease is very close to my heart. I feel an all out Media Blitz should occur and not by social media but by T.V. How many times have you seen an ad or infomercial... more »

(@tetra.julie)

Raising Awareness

Use Facebook Ads to reach adult children with local Clinical Trial opportunities

Facebook advertising has been used very effectively by our small biotech company, Tetra Discovery Partners, to recruit healthy elderly volunteers to test a memory drug. Older adults are among the fastest growing users of Facebook, and they click at a higher rate than young people. An advertising campaign with genuine and compassionate messaging will fill the funnel with interested families. (Cliched stock photos and... more »

(@natlefforts)

Raising Awareness

Leverage electronic medical records-based decision support and messaging capabilities for point-of-care recruitment.

This could include: 1) Using personal health record portals to support direct, interactive messaging between providers/staff and research participants and their family members. 2) Integrating automated paging, kiosk-based messaging “waiting room” mini-videos to support recruitment at the point of care. 3) Seeing how electronic medical records data capabilities might be used to generate lists of potential recruitment... more »

(@howardpam51)

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 »

(@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 »

(@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>