Helping others after a dementia diagnosis

Gill Taylor, 70, in County Durham, is unashamed of her dementia and determined to support others. 

Gill was diagnosed with young-onset Alzheimer’s when she was 58 after delays where she felt ‘forgotten about’. 

A lack of local activities for people with dementia prompted Gill to start an arts group called Let’s Meet Up.

Finding home

Gill now lives with her two cats in Seaham. However, she grew up in Hampshire’s New Forest and has fond childhood memories of time outdoors.

‘We had a little beach called Goatee, in Totton where I lived,’ Gill recalls. ‘As kids we used to go and swim in the mud, opposite Southampton Docks.

‘When I got older, I used to cycle and climb up deer towers and make a lot of noise and wonder why we couldn’t see any deer!

‘Back in the days, a “clip” round the head was normal,’ says Gill.

‘It was suggested by the consultant that diagnosed me that my dementia could be linked to continuous blows to the head.’

Traumatic brain injuries – caused by a blow or jolt to the head – may increase your risk of developing dementia.

More research is needed to understand the difference made by the type of injury, or by how often and when it happens.

Not everyone who experiences head injuries will develop dementia, and many other factors – such as age, genetics and lifestyle – also affect your dementia risk. 

As a teenager, Gill moved along the coast to Bournemouth and then to Amesbury.

‘I’ve lived in quite a few places,’ Gill explains. ‘Amesbury is near Stonehenge, so I used to walk there and sit amongst the stones. It wasn’t fenced in at that point.

‘When I got married, my husband and I moved to a little village called Mowsley in Leicestershire.’

After they separated, Gill moved to nearby Market Harborough, where she stayed for 30 years. 

‘It suited me, it’s a nice little town,’ she says.

‘But I knew I was having problems with my memory at that point, because my daughter kept telling me, “You need to go and see someone.”’

Diagnosis delays 

Gill spoke to a doctor about her memory problems but wasn’t prepared for how long it would take to find out the cause. 

‘I told my doctor, “There’s something wrong.” I said, “It’s not just not remembering, it’s blank.”’ 

Gill completed some memory tests and was referred to a consultant. At this point she moved out of the area and says she was ‘forgotten about for two years’.

‘I sold my house and bought a canal boat,’ Gill says.

‘I was fed up struggling and needed a change.’

‘I’d spent a bit of time on somebody’s narrowboat, and I thought, “I love this. I could do this.”’ 

Gill didn’t hesitate when buying her new floating home. ‘Water is quite important to me,’ she explains, ‘This narrow boat just felt right.’

Total blanks

Despite the new start, Gill’s memory problems started interfering with work. 

‘I was working at the YMCA with homeless young people,’ she says.

‘I’d have a support meeting one day and the next day I would have no memory of them. I was having total blanks.’

Thanks to her fast typing, Gill was able to keep accurate records, but she was anxious about forgetting important details. 

‘We had a new tenant, a 16-year-old with mental health problems,’ says Gill. ‘I thought, “What if I forget to tell the night staff to knock on their door and make sure they’re okay?” It was stressing me out something terrible.’

Gill was signed off work and, after more tests, diagnosed with young-onset Alzheimer’s in 2012, still in her late 50s. 

‘I was in such shock. It’s the last thing I ever thought of.’

At this time Gill had been married to her new husband for a year and was worried about his reaction.

Gill says her husband became abusive, which forced her to sell her canal boat and move to retirement housing in Newbury, Berkshire.

‘I wanted to go down that way because my mother had vascular dementia and I felt I ought to be there,’ Gill explained.

Travel and change

Gill enjoys travelling and recalls one trip to Alaska with her daughter Claire. 

‘Alaska is one of the best places,’ says Gill, ‘The Inside Passage is just beautiful. We ended up taking a glass-top train to Fairbanks and then we travelled to Seattle.’ 

While in Seattle Gill became separated from her daughter, who was staying with a friend. 

‘There was an APB missing person alert out on me at one point because I got lost.’

A cab driver helped Gill find her phone in a restaurant she’d forgotten the name of. 

‘The phone had low battery,’ said Gill, ‘So I got just one call.’ 

Gill and her daughter were eventually reunited in a busy marketplace. 

‘My daughter’s face was like thunder, and only now can we laugh about it,’ Gill says.

‘You’ve got to find yourself funny or you’re gonna be pretty miserable!

'Often the words come out wrong for me or I’ll go out with my dress on back to front and inside out.

‘I shall probably laugh about my dementia till the day I go.’

When Gill’s parents died, she inherited some money and decided to move. 

‘Because I’ve moved about a bit, I’ve never felt anywhere was home,’ she said. ‘I couldn’t afford to return to the New Forest – unless I won the lottery!’

Gill had once been on holiday to Durham and fell in love with the area, so she decided to make it her home five years ago.

Arts and crafts

Gill started a dementia arts group called Let’s Meet Up, because there wasn’t much for people with dementia to do locally.

‘I feel it’s such an important group,’ says Gill, ‘The pleasure that people get from it is just great.

‘We have one couple that comes and the lady can’t communicate very well but her husband, who does the art with us, says she just wants to be there.

‘It warms my heart to think that he has somewhere he can talk to other people.’

The group recently tried batik – a fabric printing technique originally from Indonesia – using wax, dye and everyday objects to make patterns. 

Gill tries her hardest to keep the group going, but admits her dementia symptoms can be a challenge. 

‘Twenty years ago I could have run the group with my eyes closed, but these days I struggle with the confidence to do absolutely anything,’ she says.

Too difficult

Gill describes herself as gregarious but doesn’t go out as much as she used to with friends.

She puts this down to her dementia and a knee injury. 

‘I damaged my knee seven months ago and don’t venture outdoors unless I go shopping,’ she says. 

‘I hate shopping! I get times where I can’t cope with too many people talking and I’ll switch off because it’s just too difficult.

‘I go to the art group and that’s it.’

Until three years ago Gill used to review books, but now struggles to do so. Her vision has been affected too. 

‘For 12 years I’ve sounded perfectly normal, and for a lot of those 12 years I felt like a fraud because I felt like I’d not got dementia enough,’ Gill says. 

‘There are gaps in my vision. I almost can’t put into words how this part of dementia affects me because there’s a lack of awareness that dementia affects people differently.’

Contrary to her initial diagnosis, Gill has now been told she may have a rarer type of dementia rather than Alzheimer’s.

She’s undergoing more tests to find out.

‘Whether they’ll give me a specific diagnosis I don’t know,’ says Gill.

‘Mum needs me’

Although Gill misses meeting friends for a drink at her local, she has support from a good friend and from Claire. 

‘My friend’s like my memory,’ says Gill, ‘We speak most days.'

‘I’m fortunate to have a friend that will come with me to appointments because there’s no way on earth I’d remember what anybody said.’

Claire also visits her regularly. 

‘At first, Claire struggled with the diagnosis,’ says Gill, ‘But over the last 12 years she has finally come to terms with it. She spends two or three months a year staying with me. 

‘If we go anywhere, she takes the lead. Like when we’re abroad at an airport passport control and they want only you, she’ll step in and say, “Actually Mum has dementia and needs me here.”’

Unashamed passion

Gill thinks a ‘radical overhaul’ is needed to improve life for people with dementia. 

‘I do get a bit passionate about anything dementia,’ she says, ‘It makes me angry that there’s not enough funding or real education. 

‘I don’t think that’s for lack of trying – I think it’s people thinking that it doesn’t affect them.’

Peer support groups can be a great resource, says Gill, who is unashamed of her diagnosis. 

‘I’m not ashamed of dementia,’ she says, ‘I’ll tell anybody and everybody I’ve got dementia. Just because I’ve got dementia doesn’t mean to say that I’m not the same as anybody else.’