Real stories

‘Volunteering for Alzheimer’s Society is my reason for life’

I hate saying the word ‘late’ when I’m talking about my husband Jim, although he’s no longer here.

He was diagnosed with dementia with Lewy bodies in 2014. It took 13 years to get to that point – it was a long and hard journey.

When I couldn’t cope and needed advice, Alzheimer’s Society were my go-to people. I wanted to say thank you for the support I received and to raise awareness about dementia. I also didn’t want anyone to go through what we had.

Volunteering was an obvious way I could give back.

After dabbling for a while, I officially became a Society volunteer in 2016, a few months after retiring from work as Jim’s needs grew.

Helping other people affected by dementia

Since then, my volunteering has snowballed. I’ll volunteer wherever I’m needed. I love it, it’s my reason for life.

Whatever you throw at me, from public speaking and fundraising, training to event organising, I will do it.

This is Jim’s legacy, I’m honouring him. It’s my way of trying to make sense of what happened to him and our family.

It triggers a range of emotions – comfort, joy, positivity and then there are days I could cry. When you see what people are experiencing, it brings back what we went through.

But if I can help somebody else by listening to them, that means everything. It’s a privilege.

And, you know, sometimes you can have such fun.

I’ve got my whole family involved, including my grandchildren. They really love to pitch in with fundraising and they’ve helped with bake sales, supermarket bag packs and an annual festive film event at our local cinema.

My youngest daughter ran a marathon for the Society and my son-in-law even did a skydive!

Receiving an honour for my volunteering

Through my work with the Society, I got the opportunity to research young-onset dementia at Ulster University in 2019.

It wasn’t easy. I had to drop out of the first year because my sister and Jim died within less than four weeks of each other.

But studying was also a huge achievement. I didn’t pass my 11+ exams, so I’d gone through life battling feelings of failure.

I’ve presented at a dementia conference at Queen’s University Belfast and published an article in an academic journal, so those feelings have long gone.

It’s been quite a year. In summer 2025, shortly after graduation, I heard I was getting a British Empire Medal in recognition of my volunteering.

At first, I ignored the letter. I thought I’d been scammed. 

I only believed it when the King’s Birthday Honours list was published.

Going to Hillsborough Castle to receive it was surreal, I just couldn’t believe it had happened to me.

Benefits of volunteering

I’ve always got something on volunteering-wise. I’ve just been involved in organising a gala at Stormont, Northern Ireland’s government buildings, to raise awareness of young-onset dementia.

We’re only here for a short time, so I am determined to keep going.

In particular, I want to encourage more people to volunteer. 

I always say you get more out of it than you put in it.

I was mentored by an amazing volunteer called Betty, whose husband was living with dementia. A big part of my role is to pass on what Betty taught me, and my experience and knowledge, to the next generation.

Volunteers learn from each other and we’re here to support each other. The connections you make can blossom into wonderful friendships.