Living with dementia and ‘still out there’ working and volunteering

Jane Scarlett, 57, in Watford, has worked in the oil industry for 23 years. Diagnosed with Alzheimer’s disease last year, she says this left her with ‘a lot to think about’ when it came to work. 

‘I travel 63 miles to work and it’s a very fast-paced environment,’ Jane says. 

I had to tell them because I was making mistakes, like I couldn’t remember how to transfer calls. It was such a relief when I told my manager, as they were so accommodating.

The company allows Jane to work flexibly and agreed to adapt her role if necessary. 

She encourages anyone in a similar position to be open and honest and to seek support. 

‘Speak to anyone you feel you can speak to,’ she says. ‘And make sure you get all the support you can. My dementia adviser Charlotte has been my rock!’ 

Karen Kitch, 60, in Rhondda Cynon Taf, south-east Wales, runs a pottery group for people affected by dementia. 

Karen was persuaded to attend pottery classes following her young-onset Alzheimer’s diagnosis in 2014. 

‘I was reluctant at first because I wasn’t creative at all,’ she said, ‘but I enjoyed it.’ 

Karen now co-facilitates an arts and wellbeing group called Still Me alongside a friend, Ceri Higgens. Karen’s husband or daughter step in to run the group if she’s ill or having a bad day. 

Karen describes pottery as a ‘massage for the brain’ that helps group members to relax. 

‘Some of the things we turn out aren’t masterpieces,’ she says, ‘but to that person it’s a piece of art.

‘When you get diagnosed with dementia, the whole family gets diagnosed,’ Karen says, ‘so we welcome relatives and carers too.’ 

Hilary Doxford, 64, in Yeovil was diagnosed with dementia in 2012, while working at a charity.

She continued to work and believes this helped to slow the progression of her dementia. 

‘I told my boss straight away because I had financial and governance responsibilities,’ Hilary says. ‘They were incredibly supportive. We set up six-month reviews to see if my responsibilities needed to change.’ 

Hilary took two years off work but then decided to return. 

‘Work kept my brain going and I’m convinced it helped slow my decline,’ she says. 

She applied for an admin role at a GP surgery in 2020 and worked there until August 2022. 

‘If people can (and want to) continue with work, they definitely should,’ Hilary says. 

She now advises the Royal College of Psychiatrists on its National Audit of Dementia, which looks at standards of hospital care. 

Michelle Nelson-Greensmith, 60, in St Helens, Merseyside, was diagnosed with vascular dementia around five years ago. She then opened Georgie Porgies café. 

‘I’ve more or less always worked in catering,’ Michelle says, ‘so I decided to get myself a little business. I named the café after my dad, who died of vascular dementia.’ 

Lockdown hit just as the café was about to open, but Michelle ran it as a takeaway. 

‘From there it just took off,’ she says. 

Michelle hung up her apron and put the café on the market in July but has no regrets. 

I’m not well enough to run the café anymore but I wouldn’t have traded the experience for the world. I’ve met a lot of customers – some are now friends. 

‘We also came second for the best breakfast in St Helens, despite competing against more established businesses.’ 

Michelle says people with dementia should continue to work if they want but should ‘listen to their body’ too. 

‘Don’t push yourself too hard,’ she says. ‘Running the café has been stressful and my brain needs a rest!’

Eamonn Dobbyn, Paul Harvey and Tim Little were recently recognised with a Dementia Hero Award for their work to improve other people’s experiences of being diagnosed with young-onset dementia. 

They’ve helped Essex Partnership University NHS Foundation Trust to create new services, including a memory assessment service for under-65s. 

‘It proves that we can still do things and break stereotypes,’ says Paul. 

Tim’s diagnosis left him questioning how he could carry on living. 

‘I was diagnosed over the phone on a Friday morning,’ he says. ‘I wanted to talk to somebody there and then but couldn’t. So, I turned to Google and found all bad news. By Sunday, I told my wife I wanted to go to Switzerland.’ 

When Tim told healthcare professionals, they were unaware that people felt this way. 

Paul says, ‘The changes we’ve made won’t help us but it’s going to help future generations.’