Real stories

Drawing on your own experience to help others dealing with a dementia diagnosis

When Dawn Davies was diagnosed with dementia at just 62, she thought her life was over. 

‘I was in total shock, absolute total shock,’ she remembers. 

It’s only two years since Dawn’s partner Brian talked to her about her memory problems. 

‘When he asked me about something I’d forgotten, my answer was always, “I don’t know, I’ve slept since then.”’

Then he said to me in a jokey way, “You’re losing your marbles, love.”

The shock of a dementia diagnosis

Dawn and Brian went to the GP for her to have a memory test. She was then sent for a CT scan, and the results changed her life forever. 

‘I was told there were changes in my brain,’ says Dawn, who responded by shutting down from the world around her, including her daughter who was at her side. 

‘We went from the clinic to get a cup of coffee and I didn’t realise my hand was shaking, until she told me to put the cup down. 

‘It was a massive, massive shock. I’d been to the clinic, was given a diagnosis and then I had been left to deal with it.’ 

Dawn went back home. 

‘I sat on the sofa and went, “Don’t talk to me. Don’t look at me. Just leave me alone,”’ she says. 

‘I didn’t want to shower, I didn’t want to eat, I didn’t want to go anywhere, I didn’t want to deal with people.’ 

I was a bit of a living nightmare to my family. I told Brian to leave me and find someone else.

Brian did his best to encourage Dawn to eat and to leave the house – just to set foot in the park on their doorstep. She wouldn’t. The idea of leaving the house and interacting with people terrified her. 

‘I was angry at the world, and I felt like a burden,’ says Dawn. ‘I had always been quite a bubbly person, chatty and friendly, and I sort of withdrew. 

‘I blamed myself for having this condition. The anger kicked in and I kept asking, “Why me?” which is quite selfish when other people are going through so much worse. 

Discovering the Dementia Hwb

One day Brian took control. He told Dawn they were going out for a walk, and he took her straight to the Dementia Hwb in Swansea’s Quadrant Shopping Centre. 

‘I walked in here and spoke to a beautiful lady, and told her I had young-onset Alzheimer’s,’ Dawn remembers. 

Dawn wondered whether the lady was being a bit patronising – until she said she’d had it herself for the past 10 years. 

‘I said, “You don’t look like you have,” and then I wanted to take the words back. I felt so stupid,’ says Dawn. 

‘But she just laughed and said, “Well what am I supposed to look like?” and I thought, “Well yeah, you don’t wear it as a badge; you don’t have a neon sign on your head.” 

‘I came in a few times, and each time they were wonderful. The support has been never-ending.’ 

How the hwb helps people

The Dementia Hwb is the place to go for a listening ear, a tissue or 10, a cup of tea and a biscuit, and a bucketload of understanding. 

The knowledgeable hwb team is joined by experts from other organisations. They feed in information and services, on anything from respite care to help at home. 

The range of those walking through the door – from across Wales and England, and even tourists from South Africa, America and Australia – shows how lucky Swansea is. The beauty of it is that it’s there for anyone to spot on their way to Costa or New Look. 

Often it’s carers who walk in, looking for guidance and understanding. It can also be someone like Dawn with their own diagnosis, or professionals wanting information or someone getting leaflets for a friend in need. 

Volunteering and learning

As Dawn began to recover from the initial shock, she decided she wanted to start giving back to the charity. She started volunteering and learned so much from her new colleagues. 

Then came the possibility of a job. Dawn had previously worked as a cleaner, and when she told her employers about her diagnosis, they immediately tried to get rid of her. She resigned. 

‘The lack of support did it for me,’ she says. 

I thought, if they can’t support me at the beginning, how are they going to support me when things progress?

In her time, Dawn had worked in all sorts of places. She’d worked as a receptionist and bartender, as well as in silver service, residential care and at a car factory. After her last employer’s response, she thought no one would ever employ her again. 

Opportunity for a new role 

When the charity told her they were creating a new job, Buddy Project Coordinator, no one could be more suited for the job. 

‘People who are first diagnosed come here and have a one-to-one appointment with me because I’ve gone through and I’m going through what they are. 

‘It’s sometimes easier for them to talk to somebody who has the condition,’ says Dawn. 

She treats everyone who comes to see her in the same way she was treated – ‘like a normal person, with feelings’. 

‘If one person comes in a bit stressed, worried or scared and I can make them feel a little bit better by the time they leave, I’ve done my job.’ 

People who come here sometimes feel they’ve been lost in the system. They feel alone. We show them they’re not.

Dealing with lows as well as highs

Life isn’t all easy, Dawn admits. 

‘I still have my wobble days. I still have the odd times when I think, “Do I want to be living with this?” 

‘Sometimes I hear people making stupid comments about Alzheimer’s, and I think, “Unless you’re actually living with it, you haven’t got a clue.” 

‘I’ve had people cross the street to avoid me, and some so-called friends don’t contact me any more. 

‘It’s OK. People don’t know how to deal with this sort of thing. They don’t know how to talk to you. There’s a stigma and that’s what we need to remove.’ 

Generally, though, life is on the up. 

‘It seemed all I had to look forward to was a bleak future,’ says Dawn, who now sounds inspired and full of ideas. 

Keeping intentionally busy 

Dawn runs her own business, making pictures, jewellery, bookmarks and glasses cases using diamond painting, and selling them on Etsy. 

She walks with Brian along the seafront. She’s planning a trip to Glastonbury – the town, not the festival – with her sister, and has a girlie weekend sorted with one of her closest friends. 

With Brian, she’s also co-director of a social enterprise called the Welsh Inclusion Sports Association. They make sure people with disabilities and health conditions aren’t left ‘sitting on the bench’ at matches but can always be part of the game. 

The busy schedule is intentional. 

‘I can be the world’s most lazy person, but if I’m not doing something, I know I’ll sit and overthink things.’

Carrying on with life

Dawn remembers tough phone calls with her mum, who had vascular dementia in her 70s. She doesn’t want her two children to experience the same thing. 

Both have been wonderful, as has her grandson. He once happily suggested to Nanny Dawn that they could go and look for her ‘lost marbles’ together in the park. 

They and others have all helped Dawn keep positive. 

‘You can still have an active life, a very normal life. You just have a health condition that you’ve got to take extra care with.’ 

Dawn is a tremendous role model. 

When I look to the future I’m going to carry on as I am and enjoy life as much as I can. I’m going to enjoy my grandson, my sister, my children, my friends.

Then of course, there’s her partner. 

‘He’s my rock,’ says Dawn of the former postman who fell in love instantly when he saw her. 

There might be another rock on its way too, this one more sparkly – that’s the final plan. 

‘One of these days,’ says Dawn, ‘I will finally get married to my beloved Brian.’