Real stories
Younger people with dementia need affordable care home options
Paul Harvey, in Essex, has young-onset dementia and worries about the pressure that residential care costs would put on his family.
I was 48 when I got diagnosed with young-onset dementia, six years ago.
Even if it was eight years before I needed a care home, I’d still only be 56. Everyone thinks we’ve got 10 to 20 years, but we haven’t in some cases.
Four years ago, me and my family researched care homes.
We found out that, because I’d be under 65, no care home will touch me unless I go private.

Not every care home caters for dementia, and out of the care homes around where I live, there are none what will take me. They said it’s against their policy to take on anyone under 65.
The closest one that will take me is a dementia village. Again, they’re reluctant on the age, but they’d take me if I was paying privately. That’s £1,800 per week, which puts a burden on my family – we can’t afford that.
What I want in the future
A few years ago, I did a video for my family through Alzheimer’s Society.
There were awkward conversations I wanted to have about things like having a DNR and needing to go into a care home. The video gave me the chance to explain what I wanted and why.
I explained that, when the time is right, I want to go into a care home.
When my Nan was going into a care home, I saw how it destroyed the family because they argued about it. I didn’t want that for my family.
But the fear is the cost, and the pressure it puts on the family is astronomical.
There’s no way I want that on their shoulders. I don’t want my boys to end up getting loans or mortgages for it – they’ve got their own families, it’s not fair on them.
Even if we owned our own house, my wife would have to sell that to cover the cost of care. But where would she live?
Double blow after dementia diagnosis
You try and do your best by your loved ones, but you can financially break them. That’s a double blow after a dementia diagnosis.
These are problems for anyone with dementia, but having young onset adds even more.
Something has to change. We need to highlight more about young onset dementia so people are aware of what could face them. I didn’t plan to get dementia!
We need to lobby our MPs and our local councils, and support campaigns and petitions.
I’m going to try and find a way changing things. If it doesn’t happen in my lifetime, it could still happen in someone else’s.
Paying for dementia care and support
View our legal and financial information to find out more about paying for care and support in England, Northern Ireland and Wales.