Lena always had lots of friends. Not so many in the UK, because we’d spent most of our years together living abroad. And when we came back here … well, let’s just say that making new friends wasn’t so easy for her any more.

She’d always been an avid letter writer, and used Facebook from its early days. But by late 2013, the writing had almost dried up. I see her last entries on Facebook still there today; she complained that her computer wasn’t working properly. She’d been fluent in both Swedish and English but now her grammar was breaking down. Logic too. Her later posts are a jumble of capitals and lower case.

Back then I would sometimes post and tag a picture of Lena on my Facebook account. Whenever I did, her friends were all still there for her, adding comments, hoping she was well, saying it was a long time since they’d heard from her. But no-one came out and asked me the question directly … what was wrong with her? Perhaps they knew.  After all, we’d had one or two friends over to visit, and I had a few whispered words in the kitchen about Lena’s diagnosis. Probably they mentioned it to other friends. Word gets around.

I’d been thinking for a while that I should say something – make an official announcement of some kind.  But how could I, without betraying Lena? In her own mind, she was absolutely fine, everything was normal. She’d have been mortified if I told the world she had Alzheimer’s. She got mad when I even mentioned the word.

So I kept Lena’s secret for around 18 months after her diagnosis. I always felt terrible about it. Lena loved her friends – she was the most social person I’ve ever known. Nothing made her happier than when people came to visit. But now she was cut off from them. She couldn’t communicate with them – not in writing anyway. And they didn’t know what to say to her, so they didn’t say much. And mostly, people stopped coming by.

That’s one of the worst effects of dementia. You gradually fade out of other people’s lives. Because of my embarrassment to speak out and my fear that I might betray Lena, I had created a situation that made us lonely and isolated. Both of us, me as well as Lena. So in the end I persuaded myself that I had to find a way to speak out. To come out on dementia.

The opportunity came in May 2015. There was an event at the Manchester Museum – Trials Of The Mind – exploring attitudes to mental health research. I’d been asked to give a 15-minute talk explaining how we’d benefited from participation in a research programme investigating the effects of moderate exercise on dementia. I’d decided that this was the perfect occasion to make the first public announcement of ‘Ctrl+Alz+Shift’, a new website I’d designed to promote activity for people with dementia.

I wanted Lena at the event.  Partly selfishly: after our recent workouts in the gym, she was the poster girl for my website campaign (as I told her repeatedly, in a cunning attempt to associate Alzheimer’s with positivity).  But even more, I saw this as a great opportunity to break out of the everyday routine, to meet new people, to get social.  It promised to be her kind of occasion.

On the way there, Lena was nervous.

— Will they ask me questions?

Ever since her diagnosis she’d hated questions. She thought they were all trying to catch her out, and make her give the wrong answer. It was the same fear every time we saw the doctor too.

— No, you’re just going to be in the audience watching.

— So what are we going to watch?

— Well, there’s a play, I think, and then some discussion groups …

— So are they going to ask me questions?

But by the time we’d finished our second breakfast of the morning – the treat of a coffee and a pastry in the Museum coffee shop – the world seemed a better place, and Lena was unquestioningly ready.

It started well. The play — Sasha’s Trial — was outstanding. How would Lena respond to the portrayal of Grandad as a person with Alzheimer’s? No problem. It was just a play, an entertainment. And after all, Alzheimer’s was nothing to do with her, was it?

But then we almost came to grief in the first group discussion period. As luck would have it, we were sitting next to one of the very few people in the room who wasn’t either a health professional or a carer. We were introducing ourselves to the group, and in tippy-toeing around my involvement with mental health, I mentioned that Lena and I had been on a dementia research programme.  Our non-carer swung round to Lena and landed a potential knock-out blow.

— So have you got dementia then?

She was rigid in her chair, furious.

— Sometimes.

It was a terrific counter-punch, an answer so unexpected that he was left with his mouth open … giving me the chance to turn the conversation in another direction …

But Lena hadn’t forgotten. She hissed in my ear.

— I want to go home.

I held her hand.

— Do you? Really? Don’t you want to see the rest of the play?

— Why did he say that?

— I don’t know. But your answer was brilliant. Look, it’s coffee-time soon.  Shall we see how you feel then?

Had I made a mistake, bringing her? Perhaps I should make my excuses and we should leave. It probably wouldn’t matter too much.  My presentation was only for 15 minutes right at the end of the day.  They’d understand.

But we didn’t even need to wait for the coffee-break. Because by then, social Lena was back, smiling, at ease.  If Alzheimer’s has one benefit, it’s the power it gives to forget bad memories as well as good ones.  No, not just forget – eradicate!

So the time had come for my spot.  Deep breath.  This was it.  A public Outing.

— Hello, I’m Alan Miles. And just over there in front of me is Lena.  I used to be known as Lena’s husband.  These days a lot of people seem to call me Lena’s carer.  But I prefer to think of myself as Lena’s partner.  We’re fighting Alzheimer’s together.

I caught her eye.  She liked it. So did the audience.

Now it was over, and almost a hundred people in the room knew our story.  It was finally out there. And leading the applause, just as she always used to, there was Lena.  Did she understand the importance of what I’d just been saying, what I’d told them about her? Maybe not. Quite often at that period, she seemed to understand the words, but couldn’t really connect all the meanings together.  But it didn’t matter. She was happy. And that made me happy.

A few people came up to chat with me afterwards. And while I was busy with them, out of the corner of my eye I could see a group gathering around Lena – including her inquisitor from earlier. But now she was in her element – laughing, talking – just like she’d never been away.

We were at the bus-stop, going home.

– Did you enjoy that?

– Yes. I really liked all the people.  They were all really … normal.

– What about the guy who upset you this morning?

– Upset me? I wasn’t upset.  What are you talking about?

– Never mind.

– No, I thought it was good.  Didn’t you say you were going to speak?