Aside from the days I (Mike Weiner) married my wife Barbara and the births of our children and grandchildren, one of the happiest days of my life was my graduation from Medical School, more than 50 years ago. I can still picture my mother and father (whose parents immigrated to the US from Eastern Europe) bursting with pride. And one of the very worst days of my life was the day that I forced my 95 year old mother to move into an Alzheimer’s care facility, taking away her independence. She was absolutely furious at me, but I knew that her progressive dementia made it unsafe for her to live without 24/7 supervision. Even though I’ve been a medical investigator studying Alzheimer’s disease, with an emphasis on developing brain imaging methods for diagnosis and monitoring of treatment effects, this powerful personal experience reignited my passion to make a real difference and help find effective treatments which slow the progression, and prevent the development of Alzheimer’s Disease.
Nothing is more heartbreaking than a brain disease that makes you lose your close relationships and control over life, and sometimes even your identity. Alzheimer’s disease is one of the most dreaded diseases, and unfortunately it’s common, affecting more than 5 million Americans. What’s even more alarming is that the rate of Alzheimer’s disease in our elderly population is rapidly growing, because more and more people in the USA , and throughout the world, are living into their 80s, 90s, and beyond. My mom, for example, is 101 and still quite active, although she has completely lost her ability to remember anything new.
I (Mike Weiner) have been studying AD for over 25 years. I lead the largest NIH funded observational study on Alzheimer’s disease called the Alzheimer’s Disease Neuroimaging Initiative (ADNI, see ADNI3.org for more information). As diseases go, Alzheimer’s disease is really quite simple: It seems to be caused by the accumulation of only two proteins. Amyloid-beta which forms the plaques, and tau which forms the tangles. We now think that the accumulation of amyloid beta leads to the accumulation of tau, and it’s the tau that damages the nerve cells and the connections between the cells (synapses) causing the symptoms. In particular, Alzheimer’s disease symptoms seem to begin with the amyloid-beta facilitated accumulation of tau in the brain region called the hippocampus. The hippocampus is the part of the brain responsible for the development of new memories. This brain region is damaged by the accumulation of tau, leading to forgetfulness which is a common early symptom of Alzheimer’s disease. But not all memory problems are due to Alzheimer’s. Fortunately new technology has led to the development of PET scans which measure amyloid-beta and tau in the brain. Even more exciting there are now treatments which appear to reduce brain levels of amyloid beta and tau. These treatments may be effective to slow the progression of Alzheimer’s disease and may even lead to prevention of symptoms.
It may surprise you, but (aside from insufficient federal funding) the major factor preventing the development of effective treatments for Alzheimer’s disease is the availability of subjects participating in clinical trials. Simply stated, the rate of participant enrollment in clinical trials is slow, and this slows our ability to develop effective treatments. But now we have a new way to get everyone, including you and your friends and family involved and helping to find a cure for Alzheimer’s disease.
More than 50 years after that day graduating from Medical School, I am 75 years old, and I have a new idea that could be a game changer for the field. But it depends on you. I am writing to urge you and your friends to join my movement, and make this disruptive innovation. The movement is an internet platform, a website the Brain Health Registry — that tracks your personal information confidentially — about your thinking, lifestyle, and brain age (cognitive function). We have a team of devoted researchers who are working in San Francisco on this platform constantly to make this a success. We have almost 50,000 people who have joined our registry, but we need at least one million to make the project impactful.
It turns out that stress is an important risk factor for dementia, and caregivers of family members with dementia suffer from the worst type of stress — chronic stress that can go on for years and impair immune function, health and even speed up brain aging itself. Some estimates are that 40% of caregivers develop depression. The sad irony is that caregivers of spouses with dementia are more likely to experience dementia themselves, compared to non-caregivers. I have asked the UCSF Stress Network (headed by Dr. Elissa Epel and Wendy Mendes) to measure the different types of stress we are all under, and especially caregivers. We want to know what stressful situations you face, how you respond to stress, and how this may change over time.
Consider joining the Brain Health Registry. You will be making a difference:
· Help us find the right people to join clinical trials. This will speed up our ability to find cures
· Learn about your own cognitive function over time.
· Learn about how much stress you are under compared to others, and track this over time.
Learn about yourself, and make a difference to research on brain health.
Originally published at medium.com