Real stories

The dementia care postcode lottery must end

In healthcare, ‘postcode lottery’ is a phrase people use to talk about the stark variations in access between areas around the UK.

I hadn’t really thought about it until I started talking to people around the country who, like me, are living with dementia.

I had assumed that my experiences would be similar to theirs.

My dementia diagnosis

I was diagnosed with young-onset dementia about a decade ago, in my 50s.

It led to some devasting changes in my life, including having to leave a job I loved.

I felt completely alone and had to proactively seek out support. 

It was a minefield, trying to work out what was available to me and how to access it.

It added stress to an already terrible time.

Most people with a diagnosis are older and dementia services are usually designed to meet their needs. 

So, there are extra challenges if you have young-onset dementia, even though there are over 70,000 people living with the condition in the UK.

Dementia peer support

I’m currently part of an Alzheimer’s Society group called Young Dementia Thematic Group.

We meet regularly online and use our personal experiences, knowledge and skills to help the charity, including helping produce an issue of Dementia together magazine.

It’s through this group that I get to interact with people living with young-onset dementia from different parts of the country, including Cumbria and Hertfordshire. 

Chatting to them about their experiences is really enlightening.

One chap in Essex has got a great set-up in terms of local dementia services. 

The care he receives on the medical side of things and everything else seems to be far superior to what we get here.

I think that if it can happen down south, then why can’t it happen everywhere? 

Quality care and services should be consistent irrespective of where you live.

Make dementia a priority

Without a shadow of a doubt, everyone living with dementia needs to have access to the same services, the same support.

But you’ve got to ask: why does this postcode lottery exist in the first place?

You could say that it shows a lack of awareness and urgency about dementia overall, even though it’s the biggest killer in the UK.

We need to talk about regional differences in dementia care as part of a wider debate.

We need to pressure the government to make dementia a priority and act now on improving dementia services for everyone.