'Why should I stop working just because I have dementia?'
It's not unusual for people of working age to be diagnosed with dementia. Many are perfectly capable of carrying on for years - but employers often don't realise it.
Each time IT consultant Doug Banks goes for a job interview - and he's had two dozen since January 2018 - it always seems to turn out the same way.
At first, everything goes smoothly. The hiring manager will be impressed with all the skills and experience detailed on his lengthy 30-year CV. Doug will be asked when he can start, and, oh, is there anything else he wants to mention?
Well, yes, Doug will say, there is something.
In 2016 he was told he had posterior cortical atrophy (PCA), also known as Benson's syndrome, a rare form of Alzheimer's disease. Many of those it affects, like 59-year-old Doug - and Terry Pratchett, the fantasy author who died in 2015 at the age of 66 - are diagnosed at a relatively young age.
Unlike others with dementia, people with PCA tend to preserve their memory until fairly late - but they typically have trouble processing images, which makes recognising objects and faces difficult.
In his job interviews, Doug doesn't even have to bring up his dementia. He'll often just say that he has a visual impairment. All he needs is a few reasonable adjustments, such as software that allows him to speak to the computer rather than use the keyboard. Sure, no problem, he'll be told.
And then nothing happens. "I don't get the job, someone else gets it," he says. Before dementia came in to his life, he says, nine times out of 10, he would have picked up the contract.
Shortly after he was given his diagnosis, Doug told his employer at the time about it. At first Doug's line manager asked him what he needed by way of support. He seemed to be performing fine in a technical role - his typing was messy, but that could be worked around. "I'm a pragmatic person so I thought - fine, the sky hasn't fallen in, I can still go out and I can still be at work," he says. As his contract came to a end, he assumed it would be renewed.
But the line manager told him they were looking for someone "more strategic". And hiring someone else.
And if now he were explicit about having been diagnosed with a form of dementia, he believes, the reaction from employers would be even worse: "They're scared. The first thing they think of is memory. Then they think old people. Then they think someone you can't speak to or converse with or do anything with - and that's it, they're going to die."
According to the Alzheimer's Society, there are 45,000 people in the UK between the ages of 30 and 65 with young-onset dementia, and 18% of them continue to work after their diagnosis. They might have mortgages to pay, as Doug did when he learned he had the condition, or they might have dependent children to provide for. Alternatively, it might just be the case that they are still perfectly capable of working, and want to keep doing so for as possible.
What is dementia?
Dementia refers to a set of symptoms caused by many diseases of the brain. The most common symptom is memory loss, particularly the struggle to remember recent events
Other symptoms can include difficulties with thinking and problem-solving, changes to behaviour, mood and personality, becoming lost in familiar places or being unable to find the right word in a conversation
Specific symptoms will depend on the parts of the brain that are damaged and the disease that is causing the dementia
Alzheimer's disease is by far the most common of the diseases that cause dementia. Others include vascular dementia, dementia with Lewy bodies, fronto-temporal dementia, Parkinson's disease dementia, amyotrophic lateral sclerosis and the newly discovered Late.
A survey by YouGov in April 2019 suggested that 30% assume people with dementia have stopped working. But it isn't the case, says Emma Bould from the Alzheimer's Society, which is asking people to sign up as Dementia Friends to mark World Alzheimer's Month.
"Dementia is an umbrella term - some conditions can be quite aggressive, and progress quite quickly, maybe over a couple of years," she says. "But with others, it could be five, 10, 15 years before it really starts to impact people's abilities."
In Great Britain, the Equality Act 2010 says people should not be chosen for redundancy or be forced to retire because of dementia (in Northern Ireland, they are covered by the Disability Discrimination Act). Employers are also required to make reasonable adjustments to help people with the condition do their jobs. In practice, however, it doesn't always work out like that.
When a doctor told Bernie McCrea, 61, that she was in the early stages of dementia, she was working as a carer for adults with learning disabilities. She says she was still in shock when she called the agency that employed her on a zero-hours basis. They told her they'd get someone to cover her shifts in future and asked her to return her uniform.
She didn't think much initially about the agency's reaction. It was only in the days and weeks afterwards, as the implications began to sink in, that she began to consider it premature.
"I was working normally - I did my job well enough," says Bernie, from Newtonstewart, County Tyrone. "I never had one complaint about it. I was always available, day and night. I loved the work I was doing. I loved working with people. I know I could have went on."
It's an issue that's likely to grow in salience. Globally around 50 million people are currently living with dementia, and the number of cases is forecast to reach 130 million by 2050 as populations grow older.
Tony Bayer, professor of geriatric medicine at the University of Cardiff, cites President Ronald Reagan, Prime Minister Winston Churchill, actor and TV presenter Prunella Scales and Pratchett - who published two best-selling books after his diagnosis - as individuals who have carried out high-profile jobs while in the early stages of dementia.
Where to get help
"Dementia is progressive, so unfortunately there comes a point where working isn't practical. But it progresses over months, years. It really depends where you are on that trajectory, what implications it has on day-to-day life.
"The vast majority of people with early dementia are just as safe as you and me - in fact perhaps a little bit more so, because they may take care to avoid hazardous situations."
Then there are the benefits that working may have on a person's well-being by providing routine, companionship and a sense of satisfaction - and of course an income.
For Doug, the financial implications have been severe.
His earnings "have gone from roughly £120,000 a year to zero", he says. His wife's part-time job in a local post office brings in £500 a month, and Doug is entitled to around £1,000 a month in Universal Credit and Personal Independence Payment. "That money doesn't really cover everything. We're always having to scrimp and save," says Doug. In order to clear their mortgage, they sold their house and downsized to a property in Upper Rissington, Gloucestershire. He's still too young to claim his state pension.
He recognises that, as a contractor, he was always at risk from the vagaries of short-term employment. Nonetheless, he'd rather be sharing his skills and contributing to the economy rather than claiming money from the government.
"Even now, I feel as if I've got a lot to give. I've still got all my knowledge and experience," he says. "All I can do now is stay fit and well and hope for some developments in dementia research."
Follow Jon Kelly on Twitter @mrjonkelly
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