Stern Advocates for Dignity, Empathetic Medical Care

After a 37-year career as an OB/GYN, Dr. Seth Stern pivoted his medical expertise toward patient advocacy following his diagnosis of Primary Progressive Aphasia (a variant of Frontotemporal Dementia). A prominent advocate for FTD awareness, he is focusing his efforts on reducing the social stigma surrounding dementia, improving early diagnosis rates, and securing funding for a cure.

Dr. Stern shared, “The primary motivation for sharing my Frontotemporal Dementia (FTD) diagnosis publicly came from the bravery and compassion Bruce Willis and his family showed in talking about his FTD diagnosis. Their openness led me to want to replace the isolation and stigma surrounding the disease with better understanding and support, educate the public, and advocate for improved compassionate communication from medical professionals.”

In 2022, Dr. Stern was informed over the phone that his PET scan was abnormal and consistent with FTD. He was told to see a specialist and “to try to enjoy the rest of his life, ending the call without offering empathy, hope, or an opportunity to ask questions.”

Knowing firsthand how devastating it is to receive such harmful news without care inspired Dr. Stern to encourage the medical community to deliver diagnoses face-to-face with appropriate patient support. He said, “On days when I have struggled with word-finding or completing sentences, people have been impatient or have frequently talked over me. I recall instances where doctors spoke directly to my wife rather than addressing me, making me feel ‘invisible.’ By going public, one of my goals is to show the world that individuals with dementia are still here, still possess value, and deserve patience and a voice.”

It took five years. During that time, Dr. Stern used his smartphone to record his own cognitive lapses. Events occurred that were entirely uncharacteristic of him and he said, “I have always been someone who dots my I’s and crosses my T’s. Yet, despite being compulsive about my schedule, I showed up for a funeral wake on the wrong day. I made coffee without putting a mug in the machine. I left my car running and my condo door unlocked overnight. Despite always loving my life as a physician, I became apathetic. I knew something was wrong.”

After extensive neurological evaluations, cognitive testing, and brain imaging, Dr. Stern received a diagnosis of FTD. He added, “Because FTD typically strikes people under 60 and presents as behavioral or language changes rather than memory loss, it is frequently misdiagnosed as depression, anxiety, or a midlife crisis. I chose to share my journey in The Wall Street Journal. I want it to serve as a warning and an educational tool, so other families might recognize the signs earlier and push for timely evaluations, neurological testing, and diagnostic imaging like PET scans or MRIs.”

Living with FTD, Dr. Stern describes his life as having good days and days that are not so good. “My good days are like being on a vacation when you don’t want your vacation to end — cherishing the clear, symptom-subdued days while knowing difficult ones will follow. Rather than withdrawing into despair, I decided to use my remaining effort to stand as a strong voice for FTD awareness. I am actively participating in the AFTD Advisory Council and serving as an active member of the Physicians Living with Dementia group through the National Council of Dementia Minds, speaking publicly at the NIH to request increased FTD research, attending and speaking at dementia conferences, speaking on GSA dementia podcasts, and encouraging others to shift from ‘preparing to die’ to actively learning how to live meaningfully with dementia.”

He advises, “The decision to seek a medical evaluation should not wait for obvious memory failure. It is time to check the moment subtle, unexplained changes in behavior, language, or executive function begin to surface, rather than waiting for profound memory loss. The first step is systematic documentation (whether it is by you, a family member or someone else close to you), followed by a comprehensive, face-to-face medical evaluation that goes beyond routine cognitive screenings.
* Track the Changes Logically: You and your family should record significant lapses or changes in a written journal — noting specific behaviors, dates, and language difficulties. Share this log directly with your physician.
* Consult a Primary Care Provider with Your Data: Bring this log to a trusted doctor to rule out other possible causes (like vitamin deficiencies, thyroid issues, or medication side effects).
* Advocate for a Specialist Referral: If your primary doctor cannot provide clear answers regarding your symptoms, request to be seen by a specialist — specifically a cognitive or behavioral neurologist.
* Request Advanced Brain Imaging: Because standard office cognitive tests often fail to detect early-stage FTD, advanced imaging is crucial. A definitive diagnosis is typically guided by structural changes on an MRI or functional patterns on a PET scan.
* Insist on Open, Compassionate Communication: From your very first appointment, bring a trusted advocate or family member with you. Your medical team should deliver all information face-to-face with empathy, provide an immediate plan for support, and ensure that you understand the results being discussed. You and your family should always be offered the opportunity to ask questions.

Dr. Stern also gave the following suggestions to those diagnosed which can help maximize your daily well-being. Try your best to continue these habits for as long as you safely can:
• Maintain Regular Healthcare Follow-ups: Schedule serial testing to accurately evaluate the ongoing status of your condition.
• Prioritize Physical Health: Focus on eating a healthy diet, exercising regularly, and getting adequate sleep each night.
• Engage Your Mind: Keep your brain active by reading and participating in cognitive exercises or mental stimulation.
• Manage Emotional Health: Actively work to reduce stress, prioritize socializing, and seek prayer or emotional support when needed.
• Enjoy your Hobbies: Continue to engage in any daily activities that you can still safely enjoy doing.
• Share Your Journey when Comfortable: If it feels appropriate, share your condition with others to foster deeper understanding and empathy from those around you.
• Consider Clinical Trials: Participate in research opportunities if you wish to help advance scientific understanding of the disease.

Dr. Stern added, “A definitive diagnosis of Frontotemporal Dementia (FTD) helps the patients and their families to better understand their changing circumstances rather than being focused on the unknown. Having this knowledge empowers both the patient and their family. Ultimately, this awareness improves compassionate care and proactive safety measures while reducing public stigma and preserving the patient’s dignity.”