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 »
Currently, Clinicaltrials.gov is the database featuring all clinical trials. Unfortunately, it is written in clinical-speak, making it hard to locate and detemine what clinical trials are available for participation. I suggest a simple app be created that combs the Clinicaltrials.gov database for recruiting trials based on the stage of Alzheimer's disease. This would expedite the search and allow patients and caregivers... 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.
The testing that is available presently is for identify mild, moderate, or advanced ALZ. There have recently been limited research to see if the sooner a person is identified and treatment begins the slower the disease progresses.
Need research to develop tests to identify earlier symptoms of the disease.
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.
Anyone, who has experienced the insult of Alzheimers, firsthand, would rather hear from doctors on the front lines, than from anyone else for their loved one's care. Researchers could use surrogates on television to relay their trial ideas for possible Alzheimers prevention, treatment or screening opportunities. That would, at least, drive interest toward, current, trial opportunities, given the legitimacy. Researchers... more »
If you plan to conduct randomized clinical trial, allow clusters (e. g. people who carpool, caregiver, partner, friends). You may offer (a) the same treatment to everyone in the cluster, or (b) allow alternatives (e.g. for caregivers to attend a program for ‘caregivers’). I used (a) in a small RCT with older adults, and it worked perfect. I noticed that for some populations transportation is a big issue. Thus, depending... more »
In order to attract more participants in studies, the studies must be located nearby. Traveling with a person with Alzheimer's disease can be difficult and complicated, especially in the moderate and late stages of the disease. If it is impossible to have the studies available in more locations, then the study should include transportation, food, and lodging as appropriate. Many people with Alzheimer's disease and... more »