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 »
Our group of meteorologists and physicians have been researching the relationship of real-time weather and human health. We have found very strong relationships between several ongoing health concerns. We believe that using wearables, looking at patient databases of actions, medicine use, and emotion, we can co-relate with weather data. With that, we can actually predict some actions of risk. Weather impacts every aspect... more »
The goal of my dissertation is to identify the policy, system, organizational, and personal factors that facilitate, bar, and motivate ADRD community members to participate in clinical trials. My first stage is establishing a community advisory board comprised of ADRD professionals (clinicians, investigators/research assistants, and advocates) and people with ADRD and their care partners (including Black/African-American... 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.
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 »
A dedicated databank should be created for those interested in Alzheimers trials. If the program could incorporate data mining, where information entered by the neurologist could instantly exclude people from certain trials but include them for others. If the program could, instantly, populate a list of possible trials in which patients met inclusion criteria, then patients and their families could research which of... more »
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 »
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.
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 »
The VA provides 1741 domestic medical facilities with some degree of mental health and/or primary care provided to veterans and qualifying family members. Eight conditions are targeted in Mental Health, but not Alzheimer's. However, screening for dementia is offered, so could be a tapped as a source of recruitment for research. A cursory review of the attached report appears to include any efforts aimed at a large population... 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 »
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 »
Approach Bill and Melinda Gates to chair a working group on building community. They have pledged money towards research. They have the expertise of reaching out as shown by their work in other cultures, where they have gone village to village to set up programs and networks of support.