Why These Conversations Matter Now

Facing the reality of end-of-life care for someone with dementia is never easy — but avoiding the conversation can lead to confusion, distress, and decisions that don’t reflect the person’s true wishes.

Talking about end-of-life preferences early, and documenting them clearly, is one of the most loving and respectful things we can do for those we care for. It brings clarity, empowers choice, and ensures that physical, emotional, and spiritual needs are honoured — especially when a person may no longer be able to speak for themselves.

With tools like Evaheld, families can record care preferences, legacy reflections, and spiritual wishes in a secure, accessible platform — ensuring that these meaningful choices are not lost to time or circumstance.

Understanding End-of-Life in the Context of Dementia

Unlike many other conditions, dementia often progresses slowly over time. As cognition and communication decline, the ability to make complex decisions becomes increasingly difficult. This is why early planning is essential.

According to Dementia Australia, people with dementia have the same rights as anyone else to express their values and make decisions about their future — but these conversations must start early and be revisited regularly.

Topics can include:

• Where the person wants to be cared for in their final stages
• Whether they would want life-prolonging treatment
• Their spiritual or cultural beliefs around death
• Who they want involved in decisions and how they wish to be remembered

The Emotional Challenge — And How to Begin

It’s normal to feel uncomfortable discussing end-of-life. These conversations are emotional, sensitive, and often avoided out of fear of “giving up” or upsetting others. But when handled with care, they offer connection, understanding, and peace.

Here are gentle ways to begin:

• “I want to make sure your wishes are honoured — can we talk about what matters most to you?”
• “If there came a time when you couldn’t tell us what you wanted, how would you want us to support you?”
• “What does comfort mean to you, especially near the end?”
• “Are there any spiritual or cultural rituals that are important to you?”

These moments can also open space for legacy sharing, such as recording a legacy letter or uploading personal reflections in your Evaheld Legacy Vault.

What Should Be Included in End-of-Life Preferences?

Every individual’s plan will be unique, but common elements include:

• Preferred place of care (home, hospital, hospice, aged care)
• Pain relief wishes (level of intervention, natural alternatives)
• Life-prolonging treatment preferences (e.g., CPR, feeding tubes, ventilation)
• Spiritual or religious practices (prayers, rituals, visitors)
• People to be involved in final moments
• Instructions for after death (e.g., memorial style, belongings distribution)
• Legacy requests (recordings, letters, recipes, traditions)

Using Evaheld, these preferences can be stored with accompanying voice notes or videos — ensuring the person’s own tone, emotion, and words are captured with care.

Role of Advance Care Planning

End-of-life wishes should be formally documented in an advance care directive and included in broader advance care planning.

These documents guide healthcare providers and families when decisions must be made — particularly when a person can no longer speak for themselves.

Incorporating these preferences into a legal estate plan also ensures alignment between medical, legal, and emotional wishes.

According to Advance Care Planning Australia, having these discussions early improves care quality, reduces family conflict, and ensures more peaceful transitions.

Supporting Carers and Decision-Makers

Conversations about end-of-life aren’t just for the person with dementia — they’re also essential for carers, power of attorneys, and loved ones who will carry out these decisions. Clarity reduces the emotional burden during difficult times and avoids second-guessing or family disagreements.

For the sandwich generation, these conversations are especially important. Many are juggling the care of their parents while raising children and managing careers. Knowing that a loved one’s wishes are clear allows them to focus on connection and comfort, not guesswork.

How to Store and Share End-of-Life Wishes

The best plans are only useful if they’re accessible. That’s why storing end-of-life preferences securely and in a central location is vital.

Using a platform like the Evaheld Legacy Vault, families can:

• Upload signed advance care directives
• Record personal messages or explanations
• Share access with authorised family members and carers
• Include voice or video reflections to add emotional context
• Update preferences as circumstances change

Families can also upload legacy content — letters, recipes, spiritual reflections — ensuring that emotional wishes are honoured alongside clinical ones.

When to Revisit the Conversation

End-of-life planning is not a one-off conversation.

It should be revisited:

• After a change in diagnosis or condition
• Following a hospital stay or emergency
• If a carer’s capacity or location changes
• Annually, as part of advance care plan reviews

This ensures the plan continues to reflect the person’s true wishes and adapts to evolving family dynamics or medical needs.

Practical Resources for Support

Navigating these conversations and documents can feel overwhelming. You don’t have to do it alone.

Helpful resources include:

• Evaheld Blog: Emotional and practical end-of-life planning support
• Nurse Info: Carer guides and clinical insights
• Dementia Australia: Advance care resources and planning help
• Advance Care Planning Australia: Official directives and planning templates
• Evaheld: A secure digital vault for care preferences, legacy materials, and family sharing