What to Write in 'Our Dementia Journey', a Caregiver's Support Companion

What Should I Write in a Dementia Journal?

When someone you love is diagnosed with dementia, life can suddenly become filled with appointments, questions, emotions and uncertainty. It can feel as though you're trying to remember a hundred different things whilst also processing one of the biggest changes your family has ever faced.

That's one of the reasons I created Our Dementia Journey.

After losing my own dad to dementia; I say lose…he didn’t pass away directly in the end but I still ‘lost’ him, I realised just how much I wished I'd written down—not only the practical details, but also the moments that made us smile, the lessons we learned and the memories that became even more precious with time. If you're wondering what to write in a dementia journal, here are some ideas that many families find helpful.

 Record Important Appointments

Keeping all your medical appointments in one place can make life much easier.

You could record:

• Appointment dates
• Questions you want to ask
• Advice from healthcare professionals
• Medication changes
• Future care plans

Writing things down means you don't have to rely on memory when so much is already on your mind.

 Keep Track of Changes

Dementia often changes gradually. Recording observations can help you notice patterns over time. You might write about:

• Memory changes
• Sleep patterns
• Mood changes
• New behaviours
• Things that seem to help
• Things that make difficult days harder

These notes may also be useful when speaking with healthcare professionals.

Celebrate the Good Days

A dementia journal shouldn't only be about challenges. Some of the most valuable pages may become the happiest ones. Perhaps today they remembered your name. Perhaps they laughed at an old family story. Perhaps you enjoyed a quiet cup of tea together. Those moments deserve to be remembered too.

Write About Your Own Feelings

As caregivers, we often spend so much time looking after someone else that we forget to check in with ourselves. Use your journal to write honestly. Some days you may feel:

• hopeful
• exhausted
• guilty
• grateful
• frustrated
• heartbroken

Every one of those emotions is valid. Writing can help untangle thoughts that otherwise stay locked inside your mind.

 Preserve Precious Memories

A precious memory of mine was when I would take Dad out for a drive in my car. At the time I had a convertible and he would love to be driven around with the top down on a sunny day. I would drive him all over the town and to the beaches and we’d stop for ice cream. He would smile and wave at everyone as we went by. Sometimes I could go round again, as he would forget that we had just been. I’ll treasure those photos I took of him enjoying his ice creams.

Not every page has to be writing. Add:

• photographs
• old recipes
• favourite sayings
• family stories
• birthday memories
• funny moments

These pages become a beautiful keepsake long after the practical notes are no longer needed.

Record the Small Victories

Sometimes success looks different.

It might be:

• a peaceful afternoon
• remembering a favourite song
• enjoying a walk together
• eating well
• smiling at an old photograph

Mine would have been going to see Dad – and him not bursting into tears at some point during my visit. It always broke my heart when he would have a ‘moment’ where he got overwhelmed and couldn’t process what was happening in his head. These are victories worth celebrating.

Don't Forget About Yourself

One of the sections I'm most passionate about is recognising when you need support.

Caregivers often put themselves last. Your journal can also become a place to ask yourself:

• How am I coping?
• What support do I need?
• Have I taken time to rest?
• What has helped me this week?

Looking after yourself isn't selfish. It helps you continue looking after someone you love.

Why I Created Our Dementia Journey

This journal wasn't created because I saw a gap in the market. It was created because I lived this journey with my own dad. There were days filled with uncertainty, appointments and difficult decisions. There were also moments of love, laughter and memories I'll treasure forever. Looking back, I realised how valuable it would have been to have one place to record everything—not only to stay organised, but to preserve the story of our journey together.

That's why I created Our Dementia Journey.

I hope it offers other families the same sense of support, comfort and clarity that I was searching for. Because although every dementia journey is different, no family should feel they have to walk it alone.

Final Thoughts

A dementia journal isn't about writing perfectly. It's about capturing what matters. Some days you'll write pages and others, you'll simply record one sentence. Both are just fine. Because one day, those pages may become one of the most meaningful things you own.

If even one family feels a little less overwhelmed because of this journal, then everything I experienced with my dad has helped create something positive. That was always my hope when I designed Our Dementia Journey.

Much Love Exx