Planning with Both Eyes Open and Heart Full

Receiving a dementia diagnosis brings with it a flood of emotions—grief, fear, urgency, and uncertainty. Families and individuals often feel torn between wanting to plan responsibly and not wanting to give up hope. But the truth is, realistic planning and hopeful living are not opposites. They can—and should—coexist.

As a dementia care expert, I encourage people to view planning not as preparing for loss, but as making space for peace, purpose, and connection. When approached with compassion and structure, legacy and care planning become acts of love and empowerment—not resignation.

What Realistic Planning Looks Like

Realistic planning involves:

• Creating or updating an Advance Care Directive
• Appointing a power of attorney
• Documenting medical, legal, and personal care wishes
• Organising finances and digital legacies
• Reflecting on emotional and spiritual values
• Recording stories, memories, and legacy letters

These practical steps help reduce stress and ensure dignity throughout the dementia journey. They also give families clarity when they need it most.

Why Hope Still Has a Place

Hope doesn’t have to mean a cure. It can mean:

• Hoping for good days filled with laughter and connection
• Hoping to preserve identity and voice through legacy recordings
• Hoping to pass on values, beliefs, and memories
• Hoping to be understood, not just remembered
• Hoping to build deeper relationships before memory fades

This kind of hope is active, grounded, and powerful. It fuels the emotional resilience needed to walk the path ahead.

Bridging the Two: Emotional and Practical Harmony

Balancing planning with hope involves:

• Talking openly about future needs while focusing on today’s joys
• Recording video messages while the person still has their unique voice
• Using routines that include storytelling, spiritual reflection, and emotional check-ins
• Building a skills and knowledge inventory to pass on wisdom, not just paperwork
• Including family in meaningful activities—not just meetings and documents

This holistic approach supports both heart and mind.

Creating a Safe Space for Both Emotions

Planning can trigger grief, denial, or anxiety—especially in the early stages of dementia. Invite both realism and hope into the space by saying:

• “Let’s plan for what matters most, so we can focus on what we still have.”
• “We can talk about care and still dream about holidays or hobbies.”
• “This isn’t the end of your story—it’s a chapter we get to write together.”

Professional support from counsellors can also help guide these conversations with compassion and clarity.

Using Legacy to Fuel Hope

Legacy work is inherently hopeful. It says: “I am still here. I still matter. My story deserves to be told.”

Some hopeful legacy actions include:

• Recording a bedtime story for future grandchildren
• Writing reflections on favourite books, songs, or prayers
• Documenting spiritual rituals or recipes for cultural continuity
• Creating memory boxes that spark joy
• Leaving behind humour, messages of resilience, or blessings

These actions bring purpose, not pressure. They give families something to hold onto and celebrate.

Tools to Support the Balance

Digital tools like Evaheld are designed to blend planning and legacy:

• Record stories and voice notes now, release them later
• Store both medical preferences and personal reflections in one place
• Select recipients and control visibility with ease
• Update entries as needs or wishes evolve
• Create emotional safety for difficult but meaningful conversations

When structure supports storytelling, the process becomes a source of healing—not just preparation.

Helping Carers and the Sandwich Generation

For carers, especially those juggling children and ageing parents, this balance is essential. Practical planning protects them from future overwhelm. Hopeful legacy work keeps them emotionally connected to the person behind the care needs.

Encourage carers to:

• Involve the person with dementia in creative legacy work
• Create shared routines focused on joy
• Document both care preferences and cherished rituals
• Honour small wins, like a good memory day or a completed legacy letter
• Reach out for support when stress overshadows hope

Recognising When to Rebalance

Sometimes planning takes over—everything becomes clinical, urgent, or overwhelming. Other times, families avoid planning completely, clinging to false hope. Pay attention to signs like:

• Emotional burnout
• Family conflict around decisions
• Delayed documentation of wishes
• Missed opportunities to connect meaningfully
• Avoidance of conversations altogether

When these signs emerge, pause. Revisit the purpose. And seek support—from loved ones, professionals, or structured tools like Evaheld.

In Summary

Dementia may bring change, but it doesn’t have to erase hope. With early, realistic planning and meaningful legacy work, individuals and families can walk this path with greater peace, clarity, and emotional connection.

Let structure support you. Let hope sustain you. And let tools like Evaheld help you preserve the voice, values, and essence of those you love—while they can still share it with the world.