Californians with Alzheimer’s need early information, options

By Norm Henriques, especially for CalMatters

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“Why seek a diagnosis of Alzheimer’s if there is nothing effective to treat it?”

This common refrain is no longer true.

I am a retired drug researcher and doctor of pharmacy. I also became an Alzheimer’s patient.

I want patients to be armed with information so they can make informed decisions about care for 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 the system too often fails to provide these resources. During my journey, I honed in on the ways in which the system and patients can change to ensure maximum agency.

My journey began when I noticed changes in myself: sudden lapses in consciousness, decreased muscle tone, and unexplained weight loss. My primary care doctor chalked it up to aging, but I knew something was wrong.

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 going on in my brain. Because of my experience in drug development and clinical research, I also knew a hard truth: Current treatments for Alzheimer’s are limited. They can help manage symptoms or slow progression, but they do not cure Alzheimer’s. This made understanding the cause of my mental changes all the more important.

I took matters into my own hands. I searched ClinicalTrials.gov and related to Barrow Neurological Institutebased in Phoenix, and was accepted into a diagnostic study. My part was not to be a guinea pig; I contribute to science and help future generations, including my grandchildren.

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

The important thing is that there was no cost to me.

For the first time, tests gave me answers to my symptoms, revealing a high level of disease-related plaque in my brain. I found out I have Alzheimer’s.

Armed with this 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 just prolong it at all costs.

I chose a treatment that fit my lifestyle and risk tolerance. After 14 monthly infusions I feel stable, clear and motivated to help others deal with this disease.

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

First, we need to dispel the idea that Alzheimer’s is simply an inevitable end-of-life process. This is a disease that deserves earlier attention, better tools and more proactive care.

Second, patients need help navigating their options. This 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, making answers unavailable to those who need them most.

Third, the industry needs to do a better job of communicating with patients. This 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 have a role to play.

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

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

This article was originally published on CalMatters and is republished under Creative Commons Attribution-NonCommercial-No Derivatives license.