
I thought the stigma around dementia was long past. Haven’t we moved beyond the days of whispered conversations and hidden struggles? But then, a dear friend called me, and I realized just how much silence still surrounds Alzheimer’s disease. Can we break the stigma of dementiIt i
She reached out because she knew about my book and my work with dementia caregivers. Her husband had recently been diagnosed with Alzheimer’s, and she was desperate for guidance. She poured out her heart—sharing his confusion, the moments of anger, the little losses that cut deep. But at the end of our conversation, she said something that truly broke my heart.
"Please don’t tell anyone. I don’t want anyone to know."
I gently asked why. She hesitated, then confessed: "People will treat us differently. We won’t fit in with our group of friends anymore."
Her words stuck with me. After all these years, after all the awareness campaigns, the books, the research, and the advocacy—why is Alzheimer's still something people feel they need to hide?
The Stigma of an Invisible Illness
Unlike cancer, which often elicits an outpouring of support, dementia still carries a weight of misunderstanding and fear. It’s not just a diagnosis—it’s a label that, for many, seems to strip away dignity and identity. People don’t know what to say, so they say nothing at all. Friends drift away. Invitations stop coming. The world shrinks.
This stigma creates a cycle of silence. Those living with dementia and their caregivers hesitate to speak up, fearing pity or exclusion. In turn, the lack of conversation means the misconceptions persist, and the fear continues.
The Fear of Being Treated Differently
My friend’s worry was not unfounded. Many caregivers and people living with dementia find themselves suddenly on the outside of their social circles. Friends become awkward, unsure of how to respond. Some believe dementia means immediate incapacity, rather than the slow, evolving journey it truly is. Others are afraid—perhaps because it reminds them of their own aging or because they simply don’t understand how to engage with someone who is changing.
But here’s the hard truth: hiding a diagnosis doesn’t stop the progression of the disease—it only stops the support that could make the journey easier.
Breaking the Silence, Rebuilding Connection
So how do we break this cycle? How do we make Alzheimer’s a condition that people can talk about openly, without fear of judgment?
Tell Your Story—Even If It’s Just to One Person.
Shame thrives in silence, but connection begins with a single conversation. If you're not ready to share widely, find one trusted friend or support group to open up to.
Educate Your Circle.
Many people pull away out of fear or ignorance, not malice. By sharing small, digestible pieces of information—like the fact that dementia doesn’t erase a person’s value or ability to engage—you can help reshape perceptions.
Find (or Create) a Supportive Community.
If your existing social group struggles to understand, seek out others who do. Dementia-friendly communities, support groups, and advocacy organizations can provide the belonging and encouragement that might be missing elsewhere.
Refuse to Disappear.
Keep showing up. If friends hesitate to invite you and your loved one, extend invitations yourself. Normalize the presence of dementia in everyday life. The more visible it is, the less fear it will inspire.
A Call to Compassion
If you’re reading this and you’re not directly affected by dementia, I ask you this: Would you still invite your friend over if they were diagnosed with Alzheimer’s? Would you still call? Would you still laugh with them, share meals, include them in your life?
If the answer is yes, then be that person for someone today.
If the answer is uncertain, then let this be a moment of reflection. Because one day, we may all face the need for understanding, patience, and unwavering friendship. Let’s create a world where Alzheimer’s isn’t something to be whispered about in the shadows, but a reality that is met with empathy, support, and inclusion.
We Can Do Better. We Must.
My friend’s words will stay with me: “I don’t want anyone to know.”
But what if, instead, she could say, “I told them, and they stood by us.”
That is the world we need to build. Together.
Let’s Keep the Conversation Going
Have you or a loved one faced stigma around an Alzheimer’s or dementia diagnosis? How did it impact your journey? Share your thoughts in the comments—I’d love to hear from you. And if this post resonated with you, please share it with someone who might need to hear it.
Barbara J. Huelat
Caregiver, Healthcare Design Specialist, Speaker & Author Championing compassionate care and innovative solutions for dementia.
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Barbara Huelat, a dynamic force in healthcare design, author, and speaker, shares her expertise in her latest publication, Taming the Chaos of Dementia. With her profound understanding and passion for the subject, she offers practical wisdom on navigating dementia care with empathy and skill, transforming this complex challenge into an empowering journey.
Explore Barbara's insights at barbarahuelat.com or call 703-795-1743 for an enriching experience.
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