Start Here: Lewy Body Dementia Support
If you’ve landed here, chances are something doesn’t feel right.
Maybe you’ve just had a diagnosis.
Maybe you’re noticing changes and don’t know what they mean.
Or maybe you’re already caring for someone and trying to keep everything together.
I’ve been through this with my grandma, and I know how overwhelming it can feel - especially at the start.
This page is here to help you find the right place to begin.
Where are you right now?
We’ve just had a diagnosis
This is usually the moment everything feels confusing.
You’re given a name - Lewy Body Dementia - but not much clarity on what it actually looks like day-to-day.
That’s exactly where we were.
👉 Start here:
- What Lewy Body Dementia looked like for us in real life
- What we didn’t understand at the beginning
- What to expect in the early stages
We’re noticing symptoms (but no diagnosis yet)
Something feels off, but you can’t quite explain it.
It might be:
- confusion that comes and goes
- unusual behaviour
- memory issues
- or even hallucinations
We missed some of the early signs because we didn’t know what we were looking at.
👉 Start here:
- Early signs we didn’t recognise
- When it’s time to push for answers
- What to pay attention to
I’m caring for someone with Lewy Body Dementia
This is where things become more real, day-to-day.
You’re managing:
- mood changes
- confusion
- routines
- and your own emotions on top of everything else
It can be exhausting - physically and mentally.
👉 Start here:
- What the progression actually felt like
- Day-to-day challenges we faced
- What helped (and what didn’t)
We’re in the later stages
This is the part no one prepares you for properly.
Things can change quickly, and it’s hard to know what’s normal and what isn’t.
👉 Start here:
- What the final stages looked like for us
- What to expect
- The emotional side of this stage
Not sure where to start? Read our full story
If you want to understand the full journey from beginning to end, you can follow everything we went through with my grandma.
What I wish we knew sooner
There are things I wish someone had just told us upfront.
Like:
- how real and distressing hallucinations can be
- how unpredictable things can feel
- how difficult it is to know what’s “normal”
I’ve put together the key things we learned along the way.
👉 [What I Wish We Knew]
Helpful Resources
You don’t have to figure everything out alone.
I’ve also gathered trusted support and information from organisations like:
- NHS
- Alzheimer’s Society
- Lewy Body Society
🤍 A quick reminder 🤍
There’s no perfect way to handle this.
Some days you’ll feel like you’re coping, other days you won’t - and that’s completely normal.
If you’re here trying to understand or support someone, you’re already doing more than you think.
I made this site because I wish we’d had something like it.