There is a significant need to support patients with Alzheimer’s disease and related dementias and their families with health care planning towards the end of life. Notably, there is a need to provide consistent support and education during the planning process. Health care providers must do more to provide this needed education and support. One such idea is to improve the coordination of care via a high-level education... more »
I am a runner and would like to see more information in our pre-race events about Alzheimer's. Runners take care of themselves physically. Adding to this base knowledge and understanding the health of the brain makes for better health. I am also an employee of Banner Alzheimer's Institute and I read the book "Still Alice". Alice, a highly intelligent women and a runner, was diagnosed with early onset of Alzheimer's... more »
Just like we see in drug stores and some big box stores what about a chair with a touch screen? The participant sits down, accepts the terms, and begins the test. It could be a condensed set of questions that screen for early signs of cognitive decline with a score at the end. The constraints could regard age, or showing ID to a pharmacist first without having to enter identifying information in the "data chair". A... more »
Ads or short articles in the American Medical Association Journal and website that could catch the attention of doctors who can recruit. They are the "feet on the ground" that see potential participants every day, know their history and could take a moment to tell them the importance of this work. Provide a patient with a website or a card that would be hard to miss or forget, with information about how to reach or... more »
1) Incorporate research elements within the community by having community agencies and entities collaborate on the research and have their say in the research being done.
2) Have community members as part of the research team.
3) Conduct research and recruitment in the community where residents congregate already and on peak times when they are at those locations even if that means weekends, evenings, etc.
My Mother was diagnosed with dementia 7 years ago. Her mother had dementia as did all her mother's 10 siblings. My Grandfather on my paternal side had dementia. I was 31 years old when my Mother was diagnosed and started looking for a study that wanted to look at younger people who didn't show signs of dementia, but had a history of dementia in their family, but I haven't found one yet. I have dementia on my maternal... more »
National Alliance for the Mentally Ill (NAMI) has chapters in cities, towns, and counties around the country. They offer a lot of support groups that meet regularly. If our extended family is any indication, having members with Alzheimer's and others with mental illness is not uncommon. Seems like a natural potential partnership opportunity. Lifelong Learning Institutes exist under the auspices of universities around... more »
Too many academic institutions take forever to open trials and process patients, causing huge loss of potential patients who give up waiting or who are simply never contacted after expressing interest. Continue the trend toward opening trials at community centers where MDs have hospital access for invasive procedures to increase enthusiasm for enrollment and provide access to trials for more patients.
My colleagues and I are building a community that supports family caregiving, providing education, support and access to providers. Our members will wear health monitoring bands, so their vitals and those of their charges can be monitored, enabling medical professionals to offer guidance in real time. We will also be collecting the data, scrubbed for HIPAA compliance, to researchers to use for development of cures and... more »
Trial match can partner with Alzheimer and LBD associations to create a listing of caregiver groups for Doctors and Facilities So to help caregivers find help. This will also assist in recruiting candidates for studies by increasing awareness. Providing speakers to these caregiver groups would enhance the effect. I include LBD because of the misdiagnosis of LBD as AD with terrible consequences.
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 »
Clear communication through the best evidence-based practices of health literacy are critical to the success and sustainability of clinical trials and science in general. The vast amount of focus in the field of health literacy has been on identifying deficits of health literacy in the general population. However, increasingly the field is waking up to the reality that barriers are set by health professionals - including... more »
True commitment to engaging, recruiting and retaining members of minority or underrepresented populations in Alzheimer's research, could be demonstrated by ensuring that clinical investigators,"steering committees"and research teams are consistently representative. Strategies that have proven successful, though perhaps more labor and cost intensive, should be promoted. Building enduring relationships in minority communities... more »
Design a Study Participant Health Passport to be given to research participants after they complete the study. They can use the Health Passport to help in self-health management and control as well as to use as a communication tool between the participants and their primary care physicians. The Health Passport will list all the study laboratory and testing results in an organized fashion with recommendations for wellness.... more »
To motivate participation in clinical research, let's engage the public to become educated and informed partners with a tangible stake in the search for a cure. Taking a page from the fight against Polio, when millions of ordinary Americans became partners in the search for a cure, by mailing in their 'dimes' to fund research, our startup InvestAcure, www.investacure.com, is building an investment platform to enable those... more »