Let’s Talk About What No One Wants to Talk About

A dementia diagnosis often comes with a heavy silence — not because people don’t care, but because of fear, uncertainty, and misunderstanding. Stigma still surrounds the condition, and sadly, it delays one of the most important parts of the journey: early planning.

When left unspoken, stigma becomes a barrier to preserving memories, expressing wishes, and protecting legacy. But when we acknowledge it — and talk through it — we create space for dignity, confidence, and healing.

With the help of trusted platforms like Evaheld, individuals and families can break that silence, preserve their identity, and plan with strength and purpose from the earliest stages of diagnosis.

The Stigma Around Dementia — And Why It Persists

Despite growing awareness, many people still associate dementia with helplessness, shame, or loss of self.

This stigma can take many forms:

• Feeling ashamed to talk about the diagnosis
• Fear of being treated differently by family or friends
• Anxiety around discrimination at work or in the community
• Misconceptions about what early-stage dementia looks like
• Internalised beliefs of being a “burden” to others

According to Dementia Australia, stigma often prevents individuals from seeking support, engaging in advance care planning, or documenting their wishes — even while they still have the ability to do so.

The Cost of Avoidance

When planning is delayed due to stigma or discomfort, individuals miss out on the most empowering part of the dementia journey: having their voice heard.

This can lead to:

• Family members making decisions without guidance
• Missed opportunities to record stories or legacy content
• Increased distress during medical or care transitions
• Uncertainty around financial and legal arrangements
• Feelings of regret, isolation, or lack of closure

By normalising early conversations and documenting wishes through secure tools like the Evaheld Legacy Vault, we help shift dementia care from reaction to reflection.

Reframing the Narrative: Early-Stage Dementia as a Strength

The early stage of dementia is not the end — it’s the beginning of a meaningful legacy journey.

During this time, many individuals are fully capable of:

• Reflecting on what matters most
• Sharing personal stories
• Recording legacy letters or messages
• Making informed medical and financial decisions
• Expressing spiritual, cultural, and emotional wishes

With tools like Evaheld, these expressions can be securely stored, scheduled for future release, and shared with loved ones in a way that uplifts rather than overwhelms.

Tackling Stigma with Action: What Individuals Can Do

1. Acknowledge the Diagnosis with Self-Compassion

Dementia does not define your worth. Begin your planning journey by honouring your identity, not hiding from it.

2. Start with Personal Legacy

If care planning feels too clinical, begin with storytelling. The Family Legacy Series offers prompts and ideas for capturing values, experiences, and life lessons.

3. Record in Your Own Voice

Use Evaheld to upload voice notes, video reflections, or letters to family. This helps counter the fear of “being forgotten” and reinforces agency.

4. Share with Trusted Individuals

Choose one or two trusted people to begin your planning journey with. You don’t have to share everything at once — but you don’t have to face it alone.

5. Ask for Respectful Support

Let loved ones know how you want to be involved in decisions, and how they can support you without taking over.

What Families and Carers Can Do

1. Lead with Empathy

Start with “How would you like to be supported?” or “What would you like us to know about what matters most to you?”

2. Avoid Rushing to Fix

Allow space for grief, reflection, and vulnerability. Acknowledge that it’s hard — but not impossible.

3. Encourage Creative Legacy Work

Support legacy projects like photo albums, recipe sharing, or storytelling — things that focus on presence, not just planning.

4. Store Documents and Memories Safely

Use tools like Evaheld to hold everything in one place — from advance care directives to personal reflections — and give access only when needed.

5. Learn the Facts, Challenge the Myths

Resources like Nurse Info and Advance Care Planning Australia can help clarify misconceptions about capacity, progression, and legal rights.

Building a Stigma-Free Culture Around Dementia

Stigma thrives in silence. But when individuals speak openly, families respond with compassion, and society adapts to honour those living with dementia, the narrative changes.

This shift involves:

• Recognising dementia as a part of life, not the end of it
• Making space for continued contribution, creativity, and planning
• Prioritising platforms that protect dignity, such as Evaheld
• Including emotional and cultural identity in estate planning and care conversations
• Supporting community storytelling and memory preservation initiatives

The Evaheld Blog shares many such stories — where legacy becomes a bridge, not a burden.

You Are Not Alone

Whether you’ve just been diagnosed or are supporting someone who has, remember: you are not alone. Early planning is not a signal of weakness — it’s an act of love, strength, and clarity.

Let’s create a world where people with dementia are not erased or feared, but celebrated and heard.