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Alzheimer's is such a hard thing to deal with. My mother is newly diagnosed and I know "getting better" isn't realistic. How do you get connected with clinical trials for Alzheimer's? Is there a place I can go to get this information? I don't want to just wait around and do nothing while we slowly lose the person who we know as mom :-( Thank you!

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University of Cincinnati has several researchers working on Alzheimer’s. They have excellent funding from Proctor & Gamble. Alzheimer’s Assoc of Greater Cincinnati and northern Kentucky is. Good resource.
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Imho, arm yourself with information from the Alzheimer's website and also I suggest that you read the book, "The 36 Hour Day."
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jfbctc59 Feb 2021
Hi Llamalover47,
I was reading on Agingcare in the fall and saw reference to The 36 hr day. I went to our local library and borrowed the book. I thought it was filled with a lot of great knowledge to be shared, and I bought a copy of it and asked my family to read it. I excuse my DW for not reading it since we received it. My DW is s elementary school teacher who has been teaching school Virtually along with putting in 16-19 hr days Mon-Fri, and 10-12 hrs on Saturday and Sunday's, on all of the Mickey Mouse stuff the administration ask for, reports wise. What bothers me most is if a kid doesn't do their homework or bother taking a test and not show up for class, the teachers are required to give a grade of 50%. Back in my day, you'd of been given what you earned a 0. She is putting the roof over our head and food in the cupboards. Our two oldest ones who are in college, never looked at it. No excuses for them.
The book is well worth the read. I was enlightened by many of the topics I know are in my future. I recommend it to all families faced with Dementia. Thank you for thinking to recommend the book. The patients like myself would benefit greatly if the families and friends would get onboard. You're the best.
John
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Check with he Alzheimer's Assoc Website. They are always doing clinical trials.
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You can just search clinical trials and then filter down to fit your needs: location of the trial since you often have to meet the doctor, what phase the trial is in because they start off just trying to find safe amounts to use and then move on to testing their 'theory' between two control groups - those who get real drug and those who get placebo. Sometimes you'll find study/trial where everyone enrolled is getting the medicine and the patient is tracked.

A regular MD that has been the family dr for years is not likely to be involved in the front line research. If you have a medical college in your area, I would suggest starting there. Those are the doctors who see patients and work on the research/trials/studies. Example, Baylor College of Medicine in the Houston area has a specialized group of doctors for nearly any disease you can think of and these doctors are involved in the research for their specialization. They are aware of trials, studies, and newer meds that show promise. I did a study with them and a treatment and continue to go there for anything I need, including primary care. All your records are in one system so if you see another doctor, there's no retesting of something, like lab work, that you just did. I highly recommend.
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In the early stages of Alzheimer's disease, there are some proven medications that will help her for now. Please talk with her doctor about starting your mother on one of them. In latter stages of this disease, the known medications are not effective. Hopefully there will be clinical trials for new treatment options at that time.
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Contact the Roskamp Institute here in Sarasota Florida. They are doing amazing things on alzheimers and dementia. 941-752-2949
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Depending on where you live, Arizona State University has a registry, and it looks like the Mayo clinic does too. Wishing you strength and comfort.
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There's been a new drug called simufilam just released that apparently stops it from progressing. Cassava Sciences. The company announced results of an interim analysis from an open-label study of simufilam, its lead drug candidate for the treatment of Alzheimer's disease.

"Patients' cognition and behavior scores both improved following six months of simufilam treatment, with no safety issues," according to the company.

I would definitely give this a try because I cannot tell how soul destroying it is to watch a loved one deteriorate. My mother is now stage 4 dementia and it's as if she has already died.
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Often the Neuro-psyc physicians who diagnose your elder can steer you to any possible clinical trials in your own area. Often they are involved in these trials. Do know that it isn't all easy doing these. Frequent tests and assessments are a part of these trials.
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Check out our lab website with studies for caregivers and their loved ones: https://medicine.yale.edu/lab/monin/

{Permission acquired to share - According to our Terms of Use regarding solicitation of members, AgingCare has verified the validity of this research study in order to allow it to remain on the Caregiver Forum for any interested party to participate}
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Alz.org has a trial match tool here:

https://www.alz.org/alzheimers-dementia/research_progress/clinical-trials
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