What it’s really like to work with dementia

This week Joan Hutchinson, 75, won an employment tribunal after being ‘kicked out’ from her job at Asda – a post she had held for two decades – after she started showing signs of “Forgetting”. Signs of dementia started in 2017, his family said; Joan had to stop driving after going around a roundabout in the wrong direction, while her colleagues worried that she was misplacing her belongings, got nervous and was unable to remember her way home. Yet repeated suggestions from her manager that she retired two years ago amounted to disability and age discrimination, the Cardiff court ruled, adding that the employer had created an “environment undesirable “and” humiliating “for a staff member just trying to do their job. .

Asda had tried to keep Joan safe, he pointed out, by changing her schedules so that she didn’t have to go home in the dark, and dropping off her groceries when she began to protect herself in the dark. of the first Covid lockdown. But the fallout highlights a growing dilemma for employers and staff: Last week, an in-depth study published in The Lancet said that worldwide cases of dementia are expected to triple by 2050, meaning more than 150 million people will be living with the disease within three decades. . In the UK, 900,000 people have Alzheimer’s disease, a form of dementia. But what is safe working like for people with dementia? We live longer and retire later; Add to that the five percent diagnosed with early-onset dementia, and the problem becomes all the more urgent.

Doron Salomon saw firsthand how a caring employer can make a difference in someone with dementia. Her mother Yvonne, now 64, had worked in fashion before the signs of Alzheimer’s disease set in when she was in her early fifties; his personality began to change, he recalls, becoming quick to anger and chaotic in the place of a once flawless organization. Still, she was “committed to continuing to work,” says Salomon, and she took on the job of preparer at Sainsbury’s in 2012, packing orders that had been placed online. Her previous experience was a long way off – after fashion she had turned into an accountant because she was “always good with numbers”. Still, the supermarket took her in and, after receiving a formal diagnosis the following year, struggled to keep her there, constantly rewriting her role in the process.

They “were always by her side, going above and beyond to make sure she was happy and felt valued,” her son says; even when, as the condition evolved, she arrived at work every day confused, “as if she had never been there before.” Regular refresher courses were given, wellness meetings with her and her husband Tony took place regularly and the company “even created a role that didn’t exist so that she could do something in the store. “. The Harrow branch was simply “phenomenal,” the 33-year-old adds. “They really took it upon themselves to give mom a sense of purpose and self-worth.”

Losing this was a major concern for Paul Seymour, who was diagnosed with Alzheimer’s at the age of 54, in 2014. “I was afraid of not finding a job,” he recalls. But he was given a role at a small property development company that knew him and then spent five years with an “incredible” team, according to his wife, Tracey. “They have been very supportive every step of the way.” Like many people with the disease, following a chain of thoughts can be a major challenge, so “instead of giving too many commands at once, there would be one at a time,” says Tracey. “There were a lot of jokes; Paul loves jokes and was a joker and carefree chappie. They knew it and they brought out the best of [him]. “Over time, his duties changed to reflect the worsening condition, until his departure in early March 2020, when he was no longer able to continue. The nationwide lockdown that soon followed and the lack of work left Paul “clueless,” says Tracey, who now cares for Paul full-time. Losing your ability to work when you’re diagnosed young isn’t just “scary” in a way. financially, she points out, but without the routine things can get even worse faster.

In many cases, “having dementia doesn’t mean you have to stop working immediately,” says Gavin Terry, chief policy officer at the Alzheimer Society. “It’s more productive to support people where possible, and it can be of tremendous benefit to people’s well-being by giving them purpose and opportunities to stay active and socially connected. “

The Equality Act 2010 states that employers should avoid discrimination and make adjustments – where reasonable – to ensure that staff with dementia are not disadvantaged. “The more you understand about a person and their dementia, the better the chances of adapting the workplace to support and empower them,” explains Terry.

Before her mother’s condition changed, Doron “hadn’t given much thought” to corporate efforts to keep disabled employees on board. Now it is “all for” companies, giving everyone the opportunity to work as long as possible. Not all roles can be performed by a person who might have memory problems or physical tasks. But there are “so many possibilities for people now,” he says.

The Alzheimer Society is one of four charities supported by this year’s Telegraph Christmas charity appeal. The others are Dogs Trust, Maggie’s and The Duke of Edinburgh’s Award. To donate, visit telegraph.co.uk/2021 call or call 0151 284 1927