What I wish people knew about dementia - from someone who has it

"Every day, I go outside to see the sunrise, and my day starts in a happy state." File photo / Sid Leigh, Unsplash

“After you hang up on this call, I will forget our conversation,” says Wendy Mitchell. “In fact, I will forget you altogether. But I won’t forget the way you made me feel. That’s what people don’t realise about a person with dementia. The emotions are still there.”

It’s been over eight years since Mitchell, a former National Health Service manager, was diagnosed with young-onset dementia at the age of 58. Thankfully, her disease has progressed slowly: Mitchell is still able to live independently in a village in East Yorkshire, with help from her daughters, Sarah and Gemma, who live close by.

“Like many people, I knew nothing about dementia at the point of my diagnosis,” says Mitchell. “I was frightened, terrified of this progressive illness and its planned trajectory that would slowly and surely be revealed to me.” All she knew were snippets picked up through media, TV, and second-hand tales from friends. None of it was encouraging.

And yet in her books, including her second, What I Wish People Knew About Dementia – released in paperback on February 2 and written with the help of a ghostwriter – Mitchell wishes to change this perception.

“So little is known about the lived experience of people with dementia,” says Mitchell. “Even though healthcare professionals are starting to understand the workings of the brain, the experience of those with the condition can be so different from the ‘tragedy’ of diagnosis and treatment.”

Here’s what she would love friends and family to know.

Detection does not have to be a disaster

Many people faced with diagnosis assume it to be the end. I certainly did. The doctor said to me “there’s nothing I can do”. But if only clinicians would balance their clinical expertise, and see the person in front of them. They could offer the hope of a life still to be lived.

What people with dementia need is help and support to continue with the things we love – in my case, walking in the countryside. My main message to the family of someone with dementia is: don’t give up on us!

Don’t ‘disable’ us before time

People take over for the kindest of reasons. But wrapping us in cotton wool allows the dementia to take over. For example, after my diagnosis, my daughters started putting my coat on for me – the result was that I then had trouble putting on my coat. Should my daughters have to come over every time I want to go out? Unless I practise day after day, I’ll forget how. So my advice is: even if it takes an hour for your relative with dementia to put on their coat, let them do it. If you want to help, do something else instead.

Don’t be frightened of a person with dementia

So often, when I meet someone, I see the fear in their faces. There’s a stigma associated with dementia, and people immediately skip to the end stages. They imagine you won’t have any conversation, talents or skills. But we do. In lockdown, my way of coping was to go for long walks in my village, taking photos. I became known as “the camera lady”. People saw my talent first, not the dementia.

The words ‘hurry up’ promote panic

Always make sure you talk to your loved one, not the disease. How would you like to be spoken to by people that you meet? With kindness and respect, of course. If you have a relative with dementia, and patience isn’t your forte, well now is the time to practise. The words “hurry up” promote panic: we cannot hurry up! Our brains are incapable of multitasking.

Think back to when you were a learner-driver, and you consciously had to think how to drive, step by step. It was exhausting. That’s how it is for a person with dementia, 24/7.

Only ask one question at a time

Do allow us to finish our sentences without finishing them for us, and don’t talk to our caregivers, instead of us, as if we weren’t there. If you’re talking to me, don’t ask lots of questions in a row, because I’ll only remember the last one, and that’s the one I will answer. And please don’t be afraid of silence: silence is the friend of someone with dementia, it allows us to think. This is why I don’t like talking on the phone any longer and prefer Zoom - people can’t see me thinking on a phone conversation.

Please never stop speaking to us, or visiting us

In late-stage dementia, a person may lose the ability to communicate. But please don’t stop speaking to us. No one knows what’s going on inside that person’s head. I’ve told my daughters that even if we reach the stage where I can no longer speak to them, not to forget that I love them. Visiting will never be a waste of time.

Dementia won’t take away emotions, it will only take away words. I’ll never forget how someone makes me feel. I’m happy with people I feel safe with – happiness puts dementia in its place – but if that person shouts or is angry, I remember those emotions.

I’m never frightened of the future. In fact, I’m much braver now

I used to be scared of animals: cats, spiders, mice. But dementia has taught me that animals are so intelligent, they pick up on sadness, and that a person wants to be loved. They give the gift of unconditional love.

Being outside also makes me happy. When I’m alone inside, I can feel the grip of dementia: outside, the air dilutes it. Every day, I go outside to see the sunrise, and my day starts in a happy state.

Technology is my saviour

Before I had dementia, I didn’t even know what an iPad was. But through the patience of my daughters, I have learned - and technology allows me to be happy living alone. Typing is an escape from my illness - that part of my brain isn’t affected: I can type more quickly than I can speak.

It may sound surprising, but I love Twitter: it’s my silent world of conversation. The silence gives me time to think. My Alexa is also amazing. She switches on my lights before I go to bed, and plays soothing music when I have anxieties. I ask her to say goodnight to me. Otherwise, the only company is dementia.

Familiar objects are so important to me

I have a ‘memory room’ in the spare bedroom, plastered with photos of places and people I love. In a box, I have my daughters’ first pairs of T-bar school shoes: the scent of leather takes me back to those happy days. When I feel dementia taking over, I go and sit in my memory room, and I can’t help but smile. Everyone should have a memory room in the corner of their house.

This moment may not be good, but the next might be wonderful

All through my younger years, I was guilty of wishing for the next weekend, the next holiday. Dementia has taught me to stop, look and enjoy what’s in front of me, to enjoy the ‘now’ things. There’s beauty in simple things, from a bird in a tree, to an object you love. Never give up on yourself – others will do that for you. You never know what opportunities will come, and if this moment isn’t a good moment, the next one might be wonderful.

• What I Wish People Knew About Dementia: from someone who knows, by Wendy Mitchell, is out in paperback now