STOP Silent START Talking- The Stigma of Dementia

The Stigma of Dementia: A Personal Reflection by Jessica Bernhardt

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear... all of which have the potential to turn a life around.” — Leo Buscaglia

At HOPE Alzheimer’s & Dementia Care, we believe that how we carry the challenges life gives us defines not only our experience but also the legacy we create for others. This is especially true in the journey of Alzheimer’s and dementia care. As the founder and someone who has walked closely with families through this process, I’ve seen firsthand how much strength, love, and dignity live within our guests—and how deeply stigma can impact them.

Dementia stigma is real. It shows up in silence, in judgment, in shame, and sometimes, even in well-meaning pity. It is the look that says someone is 'less than' because they forget, or the hesitation to invite someone to a gathering because their behavior may change unexpectedly. This stigma isolates families. It robs people of connection and community right when they need it most.

Here are a few important facts:

- Over 6 million Americans are living with Alzheimer’s in 2025.

- Dementia is not a normal part of aging—it is caused by diseases that damage the brain.

- Early support, social interaction, and brain-healthy environments can greatly improve quality of life.

- People living with dementia deserve to be seen, heard, and understood—not avoided.

- There is new research showing that Alzheimer’s and dementia can not only be prevented, but also reversed.

At HOPE, we carry the weight of this diagnosis differently. We don’t hide it. We speak openly. We learn together. We find moments of laughter, reflection, purpose, and joy—because those are still very much possible. We reject the idea that someone becomes 'less' because of a diagnosis. Instead, we believe they become more in need of grace, respect, and love.

To the families reading this: please know you are not alone. Our program is built not only to support those with dementia but also to uplift the caregivers and loved ones walking this road alongside them. Your presence here means that stigma is losing its power. You are choosing a connection. You are choosing understanding. You are choosing HOPE.

With warmth and purpose,

Jessica Bernhardt, CEO, RN, CDP

Founder, HOPE Alzheimer’s & Dementia Care

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Understanding and Overcoming the Stigma of Dementia

Stigma around dementia creates unnecessary fear, isolation, and shame for those living with it and for their loved ones. At HOPE Alzheimer’s & Dementia Care, we are committed to replacing stigma with empathy, education, and empowerment. Here are the most common types of dementia-related stigma, and how we can respond with understanding and strength.

1. Assumption of Incompetence

People often assume that individuals with dementia are incapable of understanding, contributing, or making decisions. This robs them of autonomy and respect.

How to respond:

- Speak directly to the person, not just their caregiver.

- Ask for preferences and involve them in decisions. Don’t assume you have to do everything for them.

- Be patient—processing may take longer, but their voice and/or reactions still matter.

2. Social Withdrawal

Friends and family may stop visiting or inviting someone with dementia, fearing awkwardness or discomfort. This leads to isolation.

How to respond:

- Keep invitations open and inclusive.

- Choose dementia-friendly settings with calm and familiarity.

- Accept moments of confusion with grace, your presence is what matters most.

3. Negative Labels

Words like 'crazy,' 'senile,' or 'losing it' are still used and deeply harmful. Language matters.

How to respond:

- Use affirming terms: “living with dementia” instead of “suffering.”

- Correct misinformation gently but clearly.

- Educate others with facts and compassion.

4. Caregiver Guilt and Shame

Stigma can also make caregivers feel judged or inadequate, especially when their loved one exhibits behavioral symptoms.

How to respond:

- Remind caregivers they are not alone—support groups can help.

- Validate their effort and emotional toll.

- Provide them with rest and resources to recharge.

5. Internalized Stigma

People living with dementia may feel ashamed of their diagnosis, withdraw, or stop engaging in things they love.

How to respond:

- Encourage routine and participation.

- Share inspiring stories of others living well with dementia.

- Reinforce self-worth daily—dignity never fades.

Overcoming stigma requires all of us—families, caregivers, communities—to carry the diagnosis differently. With knowledge, love, and intention, we can build a world where those living with dementia are not only accepted but truly seen and valued.

6. Stigma Around Younger-Onset Dementia

When someone under 65 is diagnosed with dementia, the stigma can be even more profound. People may not believe the diagnosis or may mislabel behaviors as stress, mental illness, or irresponsibility. These individuals often face job loss, relationship strain, and a lack of age-appropriate support.

How to respond:

- Educate with facts, not fear

- Reframe identity and abilities

- Promote support, not pity

Younger-onset dementia is often met with confusion, doubt, or stigma because it challenges the common belief that dementia only affects older adults. To address this, we must begin by educating others—explaining that dementia is a brain disease that can impact individuals as early as their 40s or 50s. By sharing facts instead of assumptions, we help shift the narrative. It's equally important to reframe how we view those living with younger-onset dementia, focusing on who they are and what they can still do, rather than what they’ve lost.

Finally, support, not pity, is essential. These individuals are often navigating complex roles as parents, partners, and professionals, and they deserve empathy, inclusion, and a community that stands beside them without judgment. Stigma cannot survive where there is knowledge, empathy, and community. By understanding its impact and actively addressing it, we move closer to a world where people with dementia are valued, supported, and empowered—every single day.

Reducing Dementia Stigma and Fostering Inclusion

Addressing stigma related to dementia requires intention, empathy, and consistent action. By shifting focus from fear and misunderstanding to support and visibility, we can help individuals living with dementia feel empowered and respected in their communities.

Highlight strengths and abilities. Rather than focusing solely on what a person can no longer do, celebrate what they can do. Small successes build confidence and preserve dignity.

Promote social involvement. Staying engaged in daily life, social events, and public spaces helps normalize the presence of dementia and weakens stereotypes. Isolation only reinforces stigma.

Maintain open, ongoing communication. Conversations with family, friends, and peers help explain behavioral changes over time, replacing confusion with understanding.

Support independence with safeguards. Encourage individuals to keep doing the things they love, like walking or cycling, while arranging safe options, such as a companion or a planned route.

Encourage early disclosure of diagnosis. When someone shares their diagnosis early with loved ones or employers, it reduces assumptions and allows for supportive adjustments, including at work.

Normalize the use of tools or identifiers. Simple items like dementia ID cards or sunflower lanyards can discreetly signal the need for patience and support in public settings.

Create and share a life story. Documenting a person’s history, values, and personality can help caregivers and professionals relate more personally and respectfully.

Address prejudice with grace. Prepare gentle, confident responses—or even use light humor—to defuse uncomfortable moments and educate others in real time.

Include the individual in decision-making. Ensuring their input is valued at every stage reinforces autonomy and combats the notion that their voice no longer matters.

Connect with advocacy efforts. Participating in awareness campaigns, storytelling projects, or support groups can empower both individuals and families while helping to shift public perception.

Seek cultural understanding. If stigma is tied to cultural or religious beliefs, involving trusted leaders such as faith figures may help bridge gaps in awareness.

Encourage peer connection. Joining support networks or groups can offer meaningful encouragement, reduce isolation, and provide helpful strategies for coping.

By practicing these steps with consistency and compassion, we make room for dignity, inclusion, and understanding—and help dismantle the stigma that too often surrounds a dementia diagnosis.

At HOPE Alzheimer’s & Dementia Care, we believe that every individual living with dementia deserves to be seen for who they are, not for their diagnosis. Stigma is not just a social barrier; it is a deep wound that causes unnecessary suffering, isolation, and shame. But it is not permanent. By choosing to lead with understanding, sharing accurate information, and keeping our hearts open, we can replace stigma with solidarity and silence with support.

Whether dementia appears later in life or through the unexpected challenges of younger-onset, every person has the right to dignity, connection, and purpose. Families, caregivers, professionals, and communities all have a role to play in changing the narrative—one that focuses on ability, not limitation, and humanity over fear. When we educate, include, and advocate, we create not only a safer world for those living with dementia but also a more compassionate one for us all.

Let this be our daily practice and promise: to carry this diagnosis with empathy, to walk beside our loved ones with grace, and to ensure that no one faces dementia alone or unseen.

If you or a loved one has been diagnosed with Alzheimer’s disease or any form of dementia and would like to learn more about how we can support you, please contact us at

530-592-9083 or visit our website at HopeDementiaCare.com. We're here to help you navigate this journey with compassion and care.

BE BLESSED!