Utilize community events to increase health literacy (e.g., lunch and learn series, lay presentations, memory screening events, town halls). Build events for families rather than restricting to older adults. Offer tours of the research space after introducing concepts of research into the community. Address community concerns and barriers to participation; directly address elephants in the room. Feature local voices of ...more »
Attend community events as guests (not speakers) to learn more about the community and its leaders/stakeholders. Host presentations to introduce your organization to the local community, and the proposed tactics and tools for outreach. Develop an effective communication strategy to support ongoing, bidirectional flow of information with local community. Work with community partners to prioritize needs and develop responsive ...more »
My name is Jim Taylor and I am a care partner for my wife Geri, who has mild Alzheimer’s disease and has been a participant in the Biogen Phase One trial of aducanumab for three years. Although not statistically valid, when the dramatic Phase One results were announced, reporting significant slowing of cognitive decline, we anticipated that the Phase Three trail (Biogen moved directly to phase three) would be fully enrolled ...more »
Examine the motivators, barriers, and facilitators to enrolling and remaining in a registry until invited to be considered for a study. Identify methods that influence a registry enrollee to participate in a study, including an analysis of how participants’ cognitive and functional status, demographics and other variables influence their registry behavior.
A few years ago, my physician and I filled out a fairly long application for a NIH Alzheimer’s Drug trial. Amazingly, I received no feedback from NIH, neither yay or nay. I am concerned that other willing candidates like me will not submit for another trial without some feedback. I suggest a communication system between Alzheimer trials to 1. Ensure feedback to submitters, 2. Share submissions with other trials to ensure ...more »
A preliminary ALZ test could be part of the HS testing. Early onset could perhaps be more easily identified. ALZ awareness would also be enhanced.
According to a 2017 study that reviewed and reported on Marital Status and the risk of Dementia, it was concluded that "During follow-up, 31 572 individuals in the study were identified as demented. Cox regression showed each non-married subcategory to be associated with a significantly higher risk of dementia than the married group, with the highest risk observed among people in the young-old age group, especially among ...more »
So many times the research that is being done does not reflect what we are observing. Everyday caregivers see so much more than what is being researched. If you include in the research what we observe, more of us will support what you are trying to test.. For example one of my clients has absolutely normal brain function after major surgery. This happens every time she goes under anesthesia. The hospital staff ...more »
One older adult says “I am not hungry,” but if this person has a severe cognitive impairment, how can we ensure that this person is physiologically hungry? Often, hunger and thurst levels of people with dementia may not be accurately accessed and care providers are challenged to interpret patients’ needs. Anterior pituitary gland (i.e., stimulated by Hypothalamus which release thirst related hormones) regulates thirst ...more »
To help raise awareness would be to report all deaths due to complications of Alzheimers. If a persons dies from complications from Alzheimer’s Disease such as pneumonia, heart failure, sepsis from infections they should start listing the cause of death as Alzheimer’s Disease. If a person dies from complications from AIDS or Breast Cancer the cause of death is AIDS or Breast Cancer. The true number of how many people ...more »
Want more trials for a variety of levels of dementia
There is famous and there is famous to the local community. Since all recruitment is local, meaning you have to go to a clinical site to enroll in a trial, the local community is the group of people who understand that your site is famous in Alzheimer's research. And famous to the local community is precisely the goal of just about all recruitment now. You don't need to be Harvard or Yale. You don't even need to have ...more »