If you've just been told that someone you love has Lewy Body Dementia, you're probably feeling overwhelmed.

That was us too.

I remember leaving appointments with more questions than answers. We understood the diagnosis, but we had no idea what life was actually going to look like.

This guide isn't medical advice. It's the things I wish someone had told us on the day we heard the words Lewy Body Dementia.

The first thing to know

Don't try to learn everything today.

You won't.

Lewy Body Dementia is complex.

You'll hear new words.

Read conflicting information.

Probably leave appointments feeling like you've forgotten half of what was said.

That's normal.

Every person is different

This is something I wish had been explained more clearly.

No two people experience Lewy Body Dementia in exactly the same way.

Some people experience hallucinations early.

Others don't.

Some people's memory remains relatively good for a long time.

Others struggle more with movement.

Try not to compare your journey to somebody else's.

Don't Google everything

This sounds strange coming from someone who runs a website...

But Google can be overwhelming.

One article will tell you one thing.

Another will tell you something completely different.

Choose a few trusted sources.

Stick with them.

Start planning - but don't panic

There will be conversations you'll eventually need to have.

Things like:

• Lasting Power of Attorney
• Driving
• Future care
• Benefits

Please don't think you need to sort them all this week.

One step at a time.

Ask for help sooner than you think

One of the biggest mistakes we made was believing we had to manage everything ourselves.

You don't.

There are charities.

Support groups.

Specialist nurses.

Other families and other members in your own family.

Use them.

Keep making memories

This might be the most important thing I can tell you.

Not every day will be difficult.

There will still be laughter.

Conversations.

Family meals.

Moments where they are completely themselves.

Don't spend all your time worrying about what comes next.

Don't forget to enjoy today and the precious moments you can still have with them.