Living with Lewy Body Dementia: What I Wish We Knew
Real experiences, honest advice, and practical support for families navigating Lewy Body Dementia.
When my grandma was diagnosed, we had no idea what was coming.
The confusion, the hallucinations, the emotional toll. None of it was explained in a way that prepared us.
This site shares our journey, but more importantly, it’s here to help you understand what to expect and feel a little less alone.
This started as a way to process what happened to my Grandma as she was diagnosed with dementia in particular, Lewy Bodies Dementia. But in doing research and trying to learn more about what she was going through, I quickly realised how little clear, real-world information there is about Lewy Body Dementia.
So this isn’t just our story anymore.
It’s a place for:
- people who’ve just had a diagnosis
- families trying to make sense of symptoms
- carers dealing with the day-to-day reality
If that’s you then you’re in the right place.
Start here
If you’re not sure where to begin, these are the best places to start:
- New diagnosis? → What Lewy Body Dementia actually looks like in real life
- Noticing symptoms? → Early signs we didn’t recognise at first
- Caring for someone? → What to expect as things progress
Our story
This is what we went through from diagnosis to the final stages.
Not just what happened, but what we wish we’d understood at the time.
- Diagnosis & early signs
- Changes in behaviour & hallucinations
- Progression & care
- The final stages
What I wish we knew
There were things no one properly explained to us.
Like:
- how real and distressing the hallucinations can be
- how quickly things can change
- how hard it is to know what’s “normal”
I’ve pulled together the key things we learned - the stuff I wish someone had just told us upfront.
Helpful resources
If you’re looking for more support, I’ve also put together trusted resources from organisations like:
- the NHS
- Alzheimer’s Society
- Lewy Body Society
🤍 You’re not alone 🤍
This is one of the hardest things a family can go through.
If you’re feeling overwhelmed, confused, or just trying to take it one day at a time - that’s completely normal.
I made this site because I wish we’d had something like it.
Stay connected
If you want updates, advice, or just to know someone else understands what you’re going through:
👉 Join here (coming soon / email signup)
Frequently Asked Questions
“Hi I'm Katie. I started Me, Grandma, and Lewy to share our story - the good, the hard, and everything in between. It was born out of love, confusion, and a need to make sense of it all. Writing about our journey has brought me comfort and understanding, and I hope it reminds others that they’re not walking this road alone.”
~ Katie B
Contact us
Please reach out to us with any questions, feedback, or stories you'd like to share. We'd love to hear from you!
About us
Me, Grandma, and Lewy is a blog dedicated to sharing our real journey through Lewy Body Dementia. Founded in West Yorkshire, United Kingdom, we aim to provide support, raise awareness, and foster a sense of community for those affected by this complex condition.