'The system isn’t set up to be fair' - Derek's struggle for dementia support

My name’s Derek Brown, and I care for my wife Margaret, who was diagnosed with Alzheimer’s disease in 2018. We live in North Yorkshire.

Everyone has a trigger point. A point when you know it’s serious. For us, it was in the car coming back from Doncaster airport. Every year, we went away somewhere warm and sunny during winter. We often ended up going to the same resort and the same hotel.

This time however, after a two-week holiday, Margaret turned to me and said, 'So, are we going on holiday then?' It really shook me.

We got the diagnosis about six months later. Margaret’s condition has advanced quite quickly since then. She has incontinence now. Changing bed sheets twice a night is exhausting.

Alzheimer’s Society have helped us. Margaret used to have a volunteer who would take her out singing every fortnight. Coronavirus stopped that though. I have been going to a carers group for the last two years. But that has moved online as well now. 

I receive a companion call every week, that’s good. I get to talk about anything, and moan and release my emotions. It lifts your spirits being able to tell someone else how things are.

Finding dementia support was difficult

Getting proper help was so tough for the first year or so. It felt like there was so much hard work just to find out the basics. And I passionately believe that isn’t fair. It’s bad enough that we need charities to tell us what benefits we are entitled to, like the Attendance Allowance or a blue badge.

Through my research, I discovered people living with dementia are entitled to a council tax discount – but councils don’t make this easy to claim, at a time in life when you need help the most. Many won’t backdate claims, with some stating that your loved one ‘must have been in need of assistance for at least six months’ before the claim. Six months is a long time to wait.

I submitted Freedom of Information requests to all 382 UK Councils; 380 wrote back. Of those 245 will only backdate discounts if your loved one is in receipt of Attendance Allowance – but how many people know that they’re entitled to it?

It strikes me that the system isn’t set up to be fair. It’s set up to release as little money as possible. 135 councils agree to backdate council tax discount claims, making it a true postcode lottery.

Taking action to reform council tax discount rules

I've taken my case to the High Court, at my own expense. After it being dismissed, I was told I could take it to the Supreme Court, but if we were to lose, I’d owe up to £100,000 in fees and expenses. I couldn’t afford that, at the risk of losing our home. I couldn’t do that to Margaret.

I have set up a government petition to change the law on council tax discount rules for people over 65 with dementia. If we reach enough signatures and the law changes, hundreds of thousands of pensioners affected by dementia will be entitled to a discount, which could make all the difference for those in need.