— Does Lena swim?

It was Lesley who asked the question as we all sat together after the DAPA class. If Lesley hadn’t been on the programme with Lena, I’d never have guessed she had dementia. Unlike Lena, she was absolutely clear about her diagnosis — ‘Early-onset Alzheimer’s, that’s what I’ve got’, she’d announced the first time we met. And as far as I could tell, her memory was pretty intact. She certainly had no difficulty explaining that she’d spent 39 years as a nurse, and how unhappy she was about being forced into early retirement when the wretched illness started affecting her work. Lesley might have been unhappy then, but she was unfailingly cheerful whenever I saw her.

Two months into the Dementia and Physical Activity research programme, and we’d come to know the others pretty well. There were only four pairs left now — patients and partners. The one who’d arrived unaccompanied for the first session had stopped showing up, and there was another pair we only saw occasionally. It was hard for them to get over to the gym, the carer explained.

Lena was loving every minute of her twice-weekly exercise sessions, and so was I. Most times I scooted off to the big gym for 30 minutes on the treadmill and a few cautious experiments with the weights, but I always got back to my fellow-carers a few minutes before the DAPA class finished to catch up with their latest dementia news, observations and theories. It felt good to share. And I particularly liked Sam, Lesley’s partner, always ready with a joke or a story.

Today we’d stayed behind after the class for a chat and a coffee.

— Does Lena swim? Yes, she loves swimming, don’t you?

Lena nodded, though not with a great deal of enthusiasm.

— It’s been a while though. We haven’t swum ever since we’ve been back in the UK. Six or seven years now. It’s always a bit cold here, isn’t it?

A memory flashed across my mind. Walking bare-foot across the sun-scorched sands of Bateen Beach in Abu Dhabi, pretending to ignore my burning feet as I chatted to Lena. 

The previous night, fate — and some gentle ribbing from a couple of my radio station buddies — had taken me to the birthday party of ‘that Swedish girl you said you liked’. It was three months since our first meeting, and Lena welcomed me with a hug … then ignored me for the rest of the evening as she mingled with an apartment-full of well-wishers. I ended up in a back room playing the guitar with some guy for a couple of hours. But when the time came to say goodbye, and I was standing just outside the door with Lena just inside, a few others leaving at the same time too, someone shouted a suggestion:

— It’s a holiday tomorrow. Why don’t we all meet up at the beach?

So there we were next morning, all meeting up at the beach, and I found myself next to Lena again, and we were talking, and our conversation just flowed, and it was so hot, and — why don’t we cool down in the sea? — so the two of us went in together and waded out a way and the water felt so good washing around us as we stood and …

We kissed.

Forever.

— No it’s not cold. Not in this pool. It’s heated.

— You’ve tried it then. Do you swim a lot, Lesley?

— No, I can’t swim at all. I just splash around in the shallow end. But I want to learn. I didn’t as a kid, and well, I never got round to it really. But now, with this horrible illness I want to do it. I want to do everything, just to fight back. So I’ve had a couple of lessons.

Sitting with our coffees up on the first floor at Fit City, we were right next door to the 25 metre swimming-pool and we could faintly hear the excitement of the schoolkids echoing up toward us. As we made our way to the exit each time, passing above the pool, it always seemed busy, even at this time, in the middle of the afternoon.

— You’re learning to swim? That’s brave.

I meant it. Lesley really was brave to try something new, seeing her illness as a challenge, not an affliction. I was learning from our little group that dementia seemed to have affected them in quite different ways.  Lesley was mentally agile and still very confident. Lena was physically agile and as sociable as ever, but struggled to take in or express ideas. The other two were rather reticent, but while one always seemed happy, the other was permanently sad. I don’t think he really wanted to be there.

I wondered whether dementia had changed them, or whether they’d always been the same. Dementia had certainly changed Lena.

— In the class, I asked Lena whether she liked swimming and first she said she did.  Then she said she didn’t.

— Come on then Lena, tell us. Do you like swimming or not?

— I don’t know.

I regretted my question. I shouldn’t have put her on the spot like that.

— You see, we’re trying to get them to put on a special morning session here, just for us people with dementia. Either a special morning session, or just reserve one or two lanes of the pool for us.

— That’d be good.

I admired Lesley for coming up with initiatives like this. But I couldn’t help wondering why people with dementia would need a special session or a special lane. Perhaps I was missing something. But I just kept quiet. I didn’t want to say anything that might dampen Lesley’s enthusiasm.

— It’s one of the things we’ve been talking about in our Dementia Champions Group, getting better access to sporting facilities.

— Dementia Champions? What’s that? It sounds fun.

— Oh, it’s a meeting we have every month, around 20 of us, to talk about ways to get people to understand dementia better. To show them that we’re not stupid, but we just forget things sometimes. To make them a bit more patient with us when we’re a bit slow. So we try to come up with good ideas, to educate them, like. Why don’t you come along, you and Lena? You’d like it. Wouldn’t they, Sam?

— What do we have to do to be champions?

— Nothing really. You just have to have dementia. Or one of you does anyway. And you have to care about making Salford a better place for those of us who’ve had a diagnosis.

— We’d be all for that. Wouldn’t we, Lena?

I don’t think Lena had been following. She looked ready to go home now.

— So when’s the next meeting?

— Next Thursday. I’ll give you all the details next time. 

A year after Lena’s diagnosis, after I’d thrown away all those information leaflets, it felt like we were about to become fully signed-up members of the dementia community. And suddenly it didn’t seem such a bad idea at all, now I knew the community had at least one fighter. I felt ready to dive in.