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

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 »


Raising Awareness

Recruit Existing Clinical Trial Participants to Campaign for more Participation

I am 53 and have younger onset Alzheimer's. I have been a participant in the Biogen Aducanumab clinical trial for 20 months. During that time I have had many conversations with my community of friends also living with younger onset Alzheimer's. There is tremendous value hearing a clinical trial story from people living with the disease and who are actively and joyfully participating in a clinical trial. I'm able to... more »

Raising Awareness

Develop information campaign for elder communities

Continuing care communities would be a great place to focus an informational campaign on participation in research. I cant say that I have seen anything in my mothers community. In those communities there are people in all stages of mental capacities, and people who have friends at all stages. It seems like there is an opportunity for a culture shift to making participation in research more of the norm than the exception.... more »


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 »


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

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 »


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 »


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.


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 »


Raising Awareness

publicizing information

People are afraid of dementia. They don't know how to handle it. It also makes them feel like they don't want to see their loved ones in this condition. They don't understand it. No one tells anyone about it. We have a support group at the Assisted Living where Mom lives. I see and hear them when they first come in. Mom's minister called me and it was happening in his family and his own kids would not go to visit... more »


Raising Awareness

Marketing tactics: Building audience trust

The 2017 Edelman Trust Barometer results state that more than 50% of global survey respondents say individuals are more believable than institutions. For the first time in history, "A person like you" was ranked as credible as a technical or academic expert on any given topic, and more credible than a CEO or government official. What does that mean when marketing to audiences to encourage them to participate in clinical... more »


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>