I wrote this last week… knowing it was my last week….
It has only been seven months at this research institute, but I have gained invaluable knowledge about Alzheimer’s disease (AD).
This site was founded in 2013 by board-certified internist and geriatric specialist Dr. Sanjiv K. Sharma and was formerly known as the Advanced Memory Research Institute. In 2021 it had been acquired by a nationwide clinical research network known as CenExel.
The facility specialized in phase II-IV clinical trials specializing in Alzheimer’s disease, memory loss, and dementia, but also offered others such as vaccine and diabetic neuropathy investigational medications.
This site was nestled in the perfect location near Holiday City in Toms River, a community with a large senior population. Yet, for reasons that still do not fully compute for me… a new CEO, lack of profitability, corporate decisions…it is being shut down.
Whatever. I digress.
Back to AD.
Situation
Alzheimer’s disease, or AD, is the most common cause of dementia in adults over age 65. Approximately 6.9 million Americans are living with Alzheimer’s, and that number is expected to nearly double by 2050!
Dementia is an umbrella term for a decline in memory, thinking, or functioning. Alzheimer’s is its leading cause, but other causes include vascular disease, Lewy body dementia, frontotemporal dementia, Parkinson’s disease, traumatic brain injury, and certain metabolic imbalances.
Alzheimer’s is progressive. It often begins with subtle cognitive changes, sometimes diagnosed as mild cognitive impairment, or MCI. Of importance, not everyone with MCI develops Alzheimer’s, but when Alzheimer’s is present, symptoms gradually worsen and may eventually interfere with a person’s ability to live independently.
We should all have a stake in this disease. Aging is the greatest risk factor, and growing older is what happens when we are fortunate enough to remain alive.
Background
In 1906, German psychiatrist and neuropathologist Alois Alzheimer performed an autopsy on a woman who had experienced progressive memory loss and confusion… what may once have simply been called “senility.”
In her brain, he discovered two abnormalities that remain hallmarks of Alzheimer’s disease today: amyloid plaques and neurofibrillary tangles.
Who Is at Risk?
Age is the greatest known risk factor, but genetics also play a role.
We all carry two copies of the APOE gene, inheriting one from each parent:
- APOE2 is the least common and may offer some protection.
- APOE3 is the most common and is considered neutral for Alzheimer’s risk.
- APOE4 increases the risk of developing late-onset Alzheimer’s. Two copies generally carry more risk than one.
As you might imagine, APOE4/4 carries the greatest genetic risk of these combinations, but it does not guarantee that someone will develop Alzheimer’s.
Another important piece is a protein called tau. Everyone has tau, and some phosphorylation of tau is normal. Tau ordinarily helps support the internal structure of brain cells.
In Alzheimer’s, tau becomes overly phosphorylated. It detaches, misfolds, and clumps together, eventually forming the neurofibrillary tangles first described by Alois Alzheimer. Elevated phosphorylated tau, or p-tau, can therefore serve as an important biomarker of the disease.
We cannot control our age or genetics, but we can work on modifiable risk factors. In general, what is good for the heart is also good for the brain:
- Following an anti-inflammatory eating pattern, such as the Mediterranean diet.
- Exercise regularly.
- Limit alcohol.
- Stay socially connected.
- Keep the brain engaged through reading, writing, puzzles, learning, and other constructive activities.
- Manage blood pressure, cholesterol, diabetes, hearing loss, and other health conditions.
Memory concerns should always be discussed with a healthcare provider. Brief cognitive assessments can establish a baseline and identify areas requiring further evaluation. I really enjoyed meeting so many lovely neighbors here while offering them memory evaluations.
Genetic tests and biomarker testing can provide useful information, but they must be interpreted carefully. Carrying APOE4 or having an elevated p-tau level does not, by itself, confirm that someone has Alzheimer’s or guarantee that they will develop it.
An amyloid PET scan can show amyloid buildup in the brain, but it is costly and is not routinely ordered for everyone. Blood tests, spinal-fluid testing, imaging, cognitive testing, symptoms, and the exclusion of other possible causes may all contribute to the diagnostic process. No single result should be interpreted in isolation.
Assessment: What Can We Do About It?
Treatment remains limited.
Traditional oral medications may temporarily help manage memory or thinking symptoms, but they do not cure Alzheimer’s. We often would say, docs would prescribe these and say good luck. I have heard countless people say they were simply ineffective.
Newer disease-modifying treatments, including the anti-amyloid antibodies lecanemab and donanemab, may be offered to carefully selected people in the earliest stages of the disease. These treatments became available because people volunteered for clinical research! And right here at this site actually! I was very proud to work alongside those who helped make that possible, bravo…
However, they are not appropriate for everyone. They are expensive, require ongoing monitoring, and carry real risks.
One potential side effect is ARIA, or amyloid-related imaging abnormalities. ARIA may involve temporary brain swelling or small areas of bleeding. It is often symptom-free but can cause headaches, confusion, vision changes, or other neurological symptoms. Rarely, it can be fatal. The risk is higher in people who carry two copies of APOE4.
Recommendation: We Need to Do Better
Alzheimer’s is a genuine fear for many people, especially those who have watched someone they love succumb to this awful thief.
I watched it happen to my mom, Virginia.
Her symptoms began subtly, but as they progressed, Alzheimer’s became a disease of our entire family.
That is why I was so proud to learn that Alzheimer’s research and clinical trials were available right here in Toms River, near Holiday City, where so many older adults live. Closing this site is a true disservice to our community!
I wanted to share a little of what I have learned because other research centers and clinical trials are still available. If you or someone you love has memory concerns, please speak with a healthcare provider and ask what evaluations, specialists, or research opportunities may be appropriate.
This is only a drop in the bucket of what there is to know about Alzheimer’s disease, but knowledge is where advocacy begins.
With gratitude,
<3KB
If anyone is interested in references:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11281824
https://pubmed.ncbi.nlm.nih.gov/42208565
