Real stories

Campaigning to change dementia care in my mum’s memory

I didn’t know much about dementia until my mum was diagnosed in 2013, just before her 80th birthday.

It was overwhelming to leave the memory clinic after her dementia diagnosis – it felt like we were being told ‘Go and get on with it.’

Mum also wanted us to keep her condition private because of the stigma attached to it.

From then on, we encountered so many challenges and barriers, things that weren’t right or that we had to fight for. 

From everyday frustrations, such as people not including mum in conversations, to not being able to find dementia trained carers as her symptoms progressed and places that were dementia friendly.

Becoming a dementia campaigner

When you consider dementia is the number one killer in the UK, you’d think politicians would be doing more about it, wouldn’t you?

I wanted to use my drive to change things, to make other people’s journeys that little bit easier.

My campaigning work started when I called Alzheimer’s Society for advice on something and I joined a mailing list. I was emailed about contacting my MP and it started from there.

Although I felt absolutely stretched caring for my mum and working part-time, I found time to campaign. I researched in the evenings when I should have been asleep!

Since then, I’ve done various projects with the Society, including speaking at the annual conference.

My local dementia campaign work

I also do initiatives off my own back – if I see an opportunity, I follow it up. For example, I’m a volunteer at a National Trust property, so I had meetings with them about making the site more dementia friendly.

I’ve contacted Suffolk police about its approach to dealing with people with dementia who go missing and promoting the use of GPS trackers.

I’ve also worked with my local hospital charity, speaking at an event to raise money to fund an activities coordinator for patients with dementia.

Everyone’s journey with dementia is different but everyone needs support. 

This prompted me to arrange an event with my MP in October 2023 to raise awareness about dementia and to signpost help and support people might not be aware of.

I believe that everyone should be given a ‘signposting’ pack following their diagnosis, so they know where to turn for help at every step of their dementia journey.

Better dementia support is essential

Mum passed away in February 2021. It brings me comfort to know that I’m doing something in her memory to help other people.

I’d love to see more understanding about dementia, among healthcare professionals as well as the public.

I believe the more you learn about the condition, the kinder you can be to those people who are living with it.

It’s dreadful to think that, even now, 12 years on from my mum’s diagnosis, there is still so much stigma and fear attached to the disease.

I will carry on doing what I can to change things.

I haven’t done anything that will set the world on fire! But imagine if we could all just do a little bit like I am doing – it will help us on the way to a bigger outcome.