Alzheimers and Huntingtons Disease - New Research from UCI - MIND

About a year ago, I volunteered to be a guinea pig for the University of California - Irvine Institute for Memory Impairments and Neurological Disorders, better known as UCI - MIND.  As a result of my interest in their program, I now receive regular reports from them on their latest research into various forms of dementia, including Alzheimer's Disease and Huntington's Disease.

Naturally, the major reason I volunteered for this program was to keep track of my own cognitive ability as I age, and do everything possible to avoid mental decline, if possible.  However, I also signed up so I could share what I learn with my readers.  In 2019, there were some encouraging news stories from the researchers at UCI - MIND about how doctors can improve their clinical management of dementia, as well as a potential therapy for Huntington's Disease, which also causes dementia.

Amyloid PET Scans Can Improve Care for Dementia Patients

The first thing they reported was what they discovered when researchers across the United States performed Amyloid PET Scans on 11,000 patients.  After reviewing the results in patients who had been diagnosed either with either mild cognitive impairment or dementia, doctors changed the care they had been giving to about 60% of the patients!  In other words, the original diagnosis for more than half the patients had been wrong.  The PET Scans revealed a number of errors in their original diagnosis.

Approximately 25 percent of patients who were thought to have Alzheimer's Disease had their diagnosis changed to non-Alzheimer's dementia after the PET scans.

Another 10 percent of patients who were not thought to have Alzheimer's Disease turned out to actually have Alzheimer's Disease.

Other diagnostic errors were also discovered after the PET scans.

Because of these PET Scans, doctors realized they needed to change the treatment they were giving many of their patients.  Unfortunately, this was a clinical study and amyloid PET scans are not covered by either Medicare or other insurance providers as a diagnostic tool before treating patients with dementia.  Hopefully, this will change in the future so that the treatments match the diseases causing dementia.  Meanwhile, if you or someone in your family is suffering with symptoms of dementia, you may want to talk to your doctor about the possibility of your loved one having a PET scan to confirm the suspected cause of their cognitive decline.

Hopeful News for Huntington's Disease Patients

The second report from UCI - MIND was about a drug called an antisense oligonucleotide or ASO.  It has been found to be a safe way to lower the Huntington protein which is linked to the genetic mutation identified with Huntington's Disease.  A large clinical trial is planned to see if this drug will also lead to the first treatment to slow the progression of Huntington's Disease.  This could make a tremendous change in the lives of the 30,000 people in the United States currently living with the disease, and the estimated 150,000 who are believed to be at risk of developing it.

How You Can Access the Latest UCI - MIND Research

You can keep up with the latest research and discover what is being learned at UCI MIND yourself!  Anyone around the world can ask questions of the UCI MIND researchers by following them on Facebook at @UCIrvineMIND.  On the first Friday of every month at 9:00 A.M. Pacific Standard Time you can watch and participate live in their Facebook series, Ask the Doc: Alzheimer's Research Today!  Each month they have a new topic which is discussed by a research expert, and Facebook Live viewers can type their questions into the comments box and receive an immediate answer.

You can also get on the UCI MIND email list at www.mind.uci.edu/events and watch past episodes of their Ask the Doc Facebook series on the UCI MIND blog and YouTube channel.  If you are concerned about developing any type of dementia, you will want to take advantage of this unique opportunity to have your questions answered by experts, or see how the experts answered the questions other people had during their presentation.  Meanwhile, I will continue to share some of the latest research news with my readers as they release it.

To get a good overview of Alzheimer's Disease and other types of dementia, as well as symptoms, causes, treatments and patient care, I recommend the helpful book, "Alzheimer's & Dementia for Dummies."  It is clearly written and a good source of information for anyone who has been diagnosed with cognitive impairment, or for anyone who is a caregiver for someone who is suffering from mental decline.

If you are interested in learning more about other common medical problems as we age, Medicare, Social Security, where to retire, financial planning and more, use the tabs or pull-down menu at the top of the page to find links to hundreds of additional pages.

Disclosure: This blog may contain affiliate links. If you decide to make a purchase from an Amazon ad, I'll make a small commission at no extra cost to you

You are reading from the blog:  http://www.baby-boomer-retirement.com

Photo of UCI taken by author.

Info in this report based on the Spring, 2019 issue of "MIND Matters"

Alzheimers Research - How to Join a Study

Alzheimer's Disease, the most common form of dementia in the United States, is expected to sky-rocket over the next few decades as Baby Boomers grow older.  Currently, about 5.5 million Americans are living with Alzheimer's Disease.  Over the next 30 years, that number is expected to triple to 16 million people, with approximately one-third of all Medicare dollars spent to treat this one disease alone.  If this concerns you, it is now possible to sign up to participate in a long-term research program, even if you currently have no signs of dementia.

There are thirty Alzheimer's Research Centers in the United States which are funded by the National Institute on Aging, part of the National Institutes of Health..  The map at the top of this post shows the cities where they are located. 

On a personal level, I recently registered with the Alzheimer's Research Center in my area, at the University of California in Irvine.  In order to participate, I registered on their MIND website at c2c.uci.edu.  Readers who live in Orange County, California may also want to register with this Research Center.  Unfortunately, each Research Center has its own separate studies and websites. You can find more information about how to register with other centers at the National Institutes of Health website at https://www.nia.nih.gov/health/registries-and-matching-services.

To initiate my registration with UCI MIND, I completed an online questionnaire which took about 30 minutes to complete.  It asked about my family background (my mother died of Alzheimer's, but my father is alive at 90 with no signs of the dementia.)  It also asked about my health, medications I take, and my lifestyle habits, including my diet, amount of sleep I get, alcohol consumption, etc.   In addition, they wanted to know what diagnostic and treatment medications I potentially would agree to, if offered.  I was a bit uncertain about how to answer these questions, since they included whether or not I was willing to take experimental medications, get brain scans, or donate my brain to the researchers upon my death.  I did not agree to all of these things, and apparently it was not necessary to agree to them all.

The speaker who suggested that interested parties should register for the UCI MIND Alzheimer's Research Project told us that people would qualify for the early clinical trial if they met the following criteria:

• Are 60 to 85 years old
• Have generally normal memory function
• Are not being treated for memory problems
• Have a close friend or relative who can partner with you
• Are willing to take an investigational medication

I met the above criteria.  As a result, I was contacted about six months after I registered on the UCI MIND website.  I went to the offices at UCI and had an interview with one of the researchers.  During the interview, I was also given a basic cognitive test to determine whether or not I was currently showing signs of dementia.  I was not.  The researcher told me that I would be contacted periodically in the future.  I would be asked to update my online questionnaire annually so I could report changes to my health, medications or medical record. 

I may also be invited back to their office occasionally to be interviewed again and given another cognitive test.  The researchers may decide at some point that I might be a good subject for more intensive study, perhaps receiving a brain scan or an experimental medication to prevent the progression of dementia.  That decision could be made at any time, or years from now.  However, it is reassuring to know that I am now part of their database and will be followed for the rest of my life. 

There is also a special, separate research study at UCI MIND which is called the 90+ Study. It is for people over the age of 90 and it has been featured on the television show "60 Minutes."  Some of the subjects of this study have been participating for over 30 years. You can find a video of the "60 Minutes" segment on YouTube, as well as other videos featuring Dr. Claudia Kawas, who is the lead investigator.

Whether you ever develop dementia or not, your participation in a research study could help someone else avoid Alzheimer's Disease and other forms of dementia in the future. That makes your participation well worth the time and an excellent way to help others and, possibly, yourself.

For more information about dementia and other common health problems as we age, financial planning, Social Security, Medicare, where to retire and more, use the tabs or pull down menu at the top of the page to find links to hundreds of additional articles.

You are reading from the blog:  http://www.baby-boomer-retirement.com

Photo credit:  National Institutes of Health