Living with dementia: 'The world has opened up for me'

'I want to encourage everyone to become a Dementia Friend. It would be a different world if everyone did this.' Photograph: Shaw & Shaw

'I want to encourage everyone to become a Dementia Friend. It would be a different world if everyone did this.' Photograph: Shaw & Shaw

Since Gina Shaw, a 62-year-old retired children's nurse, was diagnosed with Alzheimer's, she has been on a mission to make her native Liverpool a dementia-friendly city

I was in my mid-50s when I started forgetting things. I used to go to lots of meetings at work and, when I came back to base, I'd find people had returned things for me – a scarf, a notebook – that I had left behind.

I didn't think much of it at first, nobody did. But then my concentration got worse. The main thing was calculations: for me being a children's nurse, there were calculations about drugs, feeds for babies, and so forth. So then I decided I shouldn't [be a nurse] any more. I stopped at 60, before I got diagnosed.

The diagnosis took a while. I went to the doctor who did the normal tests and said: "Go away, stop worrying." I had been close to my grandmother who had had a form of dementia and I recognised in myself the habits she had. That convinced me I did have a problem.

Eventually, I was referred to a neurologist and had a head scan which showed I had vascular dementia [caused by problems in the supply of blood to the brain]. Then the year after that, I was referred again and the consultant said I had Alzheimer's. I had mixed emotions about that. I didn't want to have Alzheimer's but was glad I had a diagnosis. There is currently no cure for dementia. However, Alzheimer's is one form of dementia that they can give medication for. Its intention is not to cure but to stabilise and the hope is that the medication could help slow the progression of my condition. The drugs aren't effective for everyone with Alzheimer's disease but 40 to 70 per cent of people see improvements in their symptoms, even if it's only temporary.

Physical activity
Since then, the world has opened up for me. After I was diagnosed, I went to a post diagnostic support group where I was given lots of information about what you can do – lots of activities, physiotherapy, going on trips. Physical activity is very important – we go to a local gym with the group twice a week. There's a group called Singing for the Brain, an art group doing a memory book with painting and drawings. We've even been involved in creating an app for people with dementia.

We started our own Surf group – service users reference forum – and I'm the co-chair. Surf is a group of people with dementia who decide what they want to happen to them. We want to make Liverpool a dementia-friendly city. We invite people with dementia to give their opinions – what's wrong with it now, how can we help make it better. People with dementia are now being asked what they think. It's empowering. You can see the change in them.

When you think in-depth about what dementia means, it is more than forgetting things. Time perception is one of the big things. I will think something has happened months ago, and it was a couple of days ago, or the other way round. That is why I'm scrupulous with my diary and wallplanner.

Dementia also affects perception, so you think your foot is going on to a step but you miss it because your perception of depth is different. Or you think you've seen things out of the corner of your eye – that happens more with dementia.

Making life better
My family is very important to me. I am the eldest child in a big Liverpool family and there's also my husband, Graham, and my two children, who are in their 30s. My son is my carer. He goes everywhere with me and hovers – he's very tall! He's very patient and kind, smoothes the way for me.

I have been politically active all my life, in the peace movement and as a steward for the Royal College of Nursing. I'm passionate about equality, making life better. And that's why I'm an advocate for Dementia Friends.

I want to encourage everyone to become a Dementia Friend. It would be a different world if everyone did this. People don't know how to deal with people with dementia and the Dementia Friends awareness session empowers them. It's brilliant. When I did it, I learned things – and I have dementia myself!

Living with dementia
To find out more about how dementia is diagnosed, visit the Alzheimer's Society website.

Dementia is a condition that will affect nearly all of us at some point in our lives, either as a patient, carer or friend. Already an estimated 21 million people in the UK have a close friend or family member with dementia. To learn more about the condition and how you can help make life better for those living with it, become a Dementia Friend now.

Become a Dementia Friend

Go to the Dementia Friends website and watch the short video, then enter your details to receive a Dementia Friends badge and your little book of friendship. This free 60-page booklet includes more ideas and tips on how you can help someone living with dementia. Alternatively, you can book a 45-minute face-to-face information session run by a Dementia Friends champion (a trained volunteer) in your area.

Armed with knowledge, you will be able to make a difference to those living with dementia in your community, simply by showing understanding and kindness. You will have more confidence to engage with people who have dementia and the skills to interact in a way that is both useful and welcome. And you will have made a step towards creating a dementia-friendly society.

It is easy and free to become a Dementia Friend at