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 »
With most providers utilizing several different electronic health records and results from visits not share in the appropriate time frame. Or one shared patient portal related to his/her Alzheimer appointment. Recently has to take my family member to an urgent care facility as her PCP doesn't have weekend hours and we were at this appointment for five hours. My family member was severely dehydrated and required an... more »
Institute a celebrity driven awareness campaign targeted towards raising awareness of clinical trials in AD among the 50+ age cohort either through TV ads or on the radio or through newspapers.
Involve high school students who have volunteer hours to perform. A student can be paired with a study participant, to accompany the participant through the trial process. Students can work on going to senior communities and senior centers and provide education about the clinical trial process and they receive "training" on the trial process, and cognitive impairment/dementia. Use high schools as trial sites.
My husband and I recently volunteered for a long term Alzheimers study. We were both found to be not eligible due to current medications we take. We each take 1 med which is not related to Alzheimers or dementia. We are in our late 60's. most people our age are on some type of medication. I think it would enrich the study to be able to include patients who are currently taking medications that are commonly taken... more »
Physicians of all kinds need to be more informed of clinical trials. As a caregiver for a spouse with cancer, never once was a clinical trial mentioned in her diagnosis or treatment processes. Only when I sought information on my own did I find that we could have participated in lifestyle or survey trials, but we I found them too late. Information about clinical trials and the importance needs to be provide while new... 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 »
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 »
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 »
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 »
Local non profit organization have strong existing relationships with people at every stage of the disease as well as the "worried well." As trusted sources of information and support, these organizations are well suited to provide information and referral but do not always have the capacity. Partnerships with trial providers wherein the non profit hosts community educational events and experiences, designed to be... more »