BUENOS AIRES, Argentina – A vocal advocate for caregivers of individuals with dementia is challenging the prevalence of unsolicited opinions offered by those without direct experience, urging a shift toward empathetic listening and recognizing the unique challenges faced by families navigating the disease.
The call to action comes as dementia diagnoses continue to rise globally, impacting an estimated 55 million people worldwide as of 2020, according to the World Health Organization. With an aging population, the number of caregivers-often family members-is also increasing, creating a growing need for support and understanding.The advocate’s message, delivered on August 30, 2025, aims to protect caregivers from judgment and foster a more supportive environment.
Speaking publicly, the advocate explained his motivation stemmed from sharing his personal journey with his partner’s illness.”I knew that by sharing part of our intimate information we would see thes two sides. On the one hand, there would be people with an opinion versus people with a real experience (caregivers),” he stated.
He observed a pattern of swift judgment directed toward caregivers. “People with opinions were very fast when judging caregivers (…) and that is what caregivers have to endure, be judged by others and receive criticisms from others,” he added. He emphasized the importance of distinguishing between informed perspectives and unhelpful commentary.
The advocate referenced his book, “The unexpected trip”, which details his experience with Willis’s disease, as a resource for understanding the realities of caregiving. He asserted, “Everyone has an opinion, but remember that not everyone has lived the experience to support them, and if that is the case, they should not offer their grain of sand about it and you should not pay attention to them.”
He delivered a stark message regarding the validity of opinions lacking lived experience: Those who do not have the experience of living with someone with dementia, though noisy their opinions are, have no voice or vote in this conversation.
Acknowledging the value of professional guidance, he also highlighted the limitations of even expert advice. “Nothing changes more powerfully how to live the experience, even if someone is closely familiar with dementia or the condition you have, they are not in your home, so they do not know how that person behaves or about your family dynamics,” he shared, quoting his therapist’s insight.
