Californians with Alzheimer’s need early info, options

By Norm Enriquez, Special for CalMatters

This commentary was originally published by CalMatters. Sign up for their newsletters.

Guest Commentary written by

“Why pursue an Alzheimer’s diagnosis if there’s nothing effective to treat it?”

This common refrain is no longer true. 

I’m a retired drug researcher and a pharmacy doctor. I also have become an Alzheimer’s patient.

I want patients to be armed with information so they can make informed care decisions about how they want to live. Patients need access to early diagnosis and clear, accessible information about their treatment options and risks. 

Unfortunately, today’s healthcare system too often fails to provide those resources. Through my journey, I’ve honed in on ways the system and patients can shift to give themselves maximum agency. 

My journey began when I noticed changes in myself: sudden lapses in awareness, decreased muscle tone and unexplained weight loss. My primary care physician attributed it to aging, but I knew something wasn’t right.

Californians should trust their instincts, especially in the context of their family history. Mine includes both dementia and a brain tumor. 

Before considering any treatment, I knew I needed answers about what was happening in my brain. Because of my background in drug development and clinical research, I also knew a hard truth: Current Alzheimer’s treatments are limited. They may help manage symptoms or slow progression, but they do not cure Alzheimer’s. That made understanding the cause of my mental changes even more important.

I took matters into my own hands. I searched ClinicalTrials.gov and connected with the Barrow Neurological Institute, based in Phoenix, and was accepted into a diagnostic study. My participation was not about being a guinea pig; I am contributing to science and helping future generations, including my grandchildren.

The study included a wide range of participants, from cognitively normal individuals to those with dementia. It used a battery of advanced cognitive and diagnostic tools, including blood-based biomarkers — to potentially diagnose Alzheimer’s with a blood test — and imaging techniques, many of which are still being validated.

Importantly, there was no cost to me. 

For the first time, the tests gave me answers about my symptoms, revealing a high level of disease-associated plaque in my brain. I learned I did have Alzheimer’s.

Armed with that knowledge, I researched two recently approved therapies, weighing their risks, benefits and alignment with my priorities — which are that I want to live the rest of my life with quality and dignity, not simply to extend it at all costs.

I chose a treatment that fits my lifestyle and risk tolerance. After 14 monthly infusions, I feel stable, clear-headed and motivated to help others navigate this disease.

But my experience underscores a larger issue: Too many Californians don’t have access to this kind of clarity or choice.

First, we must dispel the notion that Alzheimer’s is simply an inevitable end-of-life process. It is a disease, one that deserves earlier attention, better tools and more proactive care.

Second, patients need help navigating their options. That includes finding clinical trials, understanding diagnostic tools and managing the financial realities of care. Today many promising diagnostic tests are not consistently covered by insurance, putting answers out of reach for those who need them most.

Third, the industry must do a better job communicating with patients. That means developing clear, accessible materials that explain clinical trials, risks and benefits to help patients make informed decisions.

Finally, society deserves a broader understanding of the true cost of Alzheimer’s — not just medical, but economic and human. Better data on patient preferences, outcomes and societal costs can help prioritize solutions that work. Patients, government and industry all have a role to play. 

As for me, I’ve chosen to live intentionally. I stay active, challenge my mind and spend time with my family, especially my seven grandchildren. My career in research may look different today, but I am still contributing, now as both a patient and an advocate.

Alzheimer’s is not easy. But with the right information, support and mindset, it is still possible for Californians to face it with clarity and to live well in the time we have.

This article was originally published on CalMatters and was republished under the Creative Commons Attribution-NonCommercial-NoDerivatives license.