"Why should I stop working just because I have dementia?

It is not unusual for dementia to be diagnosed in people of working age. Many are perfectly capable of going on for years – but employers often do not realize it.

Every time the computer consultant, Doug Banks, goes for a job interview – and he has had two dozen since January 2018 – it always seems like the same thing.

At first, everything goes well. The Recruitment Manager will be impressed with all the detailed skills and experience on his 30 year long resume. We'll ask Doug when he can start and, oh, is there anything else he wants to mention?

Well, yes, Doug said, there is something.

In 2016, he was informed that he was suffering from posterior cortical atrophy (PCA), also known as Benson syndrome, a rare form of Alzheimer's disease. Many of his patients, like Doug, 59 years old – and Terry Pratchett, the fantasy writer who died in 2015 at the age of 66 – are diagnosed at a relatively young age.

Unlike people with dementia, people with PCA tend to keep their memory rather late, but they usually have trouble processing images, which complicates the recognition of objects and faces.

In his job interviews, Doug does not even have to raise his insanity. He will often say that he has a visual impairment. He just needs some reasonable adjustments, such as software that allows him to talk to the computer instead of using the keyboard. Of course, no problem, we will tell him.

And then nothing happens. "I do not get the job, someone else gets it," he says. Before the dementia came back to life, he would have won the contract nine times out of 10.

Shortly after receiving his diagnosis, Doug informed his employer at the time. At first, Doug's supervisor asked him what he needed. He seemed to play well in a technical role – his typing was messy, but it could be fixed. "I am a pragmatic person, so I thought, well, the sky has not fallen, I can still go out and I can always be at work," he says. His contract ending, he supposed it would be renewed.

But the line manager told him that they were looking for someone from "more strategic". And hire someone else.

If it had been explicit about the diagnosis of a form of dementia, the reaction of the employers would have been even worse: "They are afraid.The first thing they think is memory.Then they think to seniors Then they think that someone to whom you can not talk, nor converse, nor do anything – and that's all, they will die. "

According to the Alzheimer Society, in the United Kingdom, 45,000 people between the ages of 30 and 65 have early dementia, and 18% of them continue to work after their diagnosis. They could have mortgages to pay, as Doug did when he learned that he was suffering from the disease, or they could have dependent children. Alternatively, they may still be perfectly capable of working and wish to continue doing so as much as possible.

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What is dementia?

Dementia refers to a set of symptoms caused by many brain diseases. The most common symptom is memory loss, especially the difficulty of remembering recent events.

Other symptoms may include difficulty in thinking and solving problems, changes in behavior, mood and personality, getting lost in familiar places or not finding the right word in a conversation .

The specific symptoms depend on the damaged parts of the brain and the disease causing the dementia.

Alzheimer's disease is by far the most common of the diseases that cause dementia. Vascular dementia, Lewy body dementia, frontotemporal dementia, Parkinson's disease dementia, amyotrophic lateral sclerosis and the recent discovery of Late.

Dementia: the greatest challenge of our time for health

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A poll conducted by YouGov in April 2019 suggested that 30% of those alleged to have stopped working. But that's not the case, says Emma Bould of the Alzheimer Society.

"Dementia is a generic term – some conditions can be quite aggressive and progress fairly quickly, perhaps over a few years," she says. "But with others, it could take five, 10, or 15 years before it starts to impact people's abilities."

In Great Britain, the Equality Act 2010 stipulates that people must not be fired or forced to retire because of dementia (in Northern Ireland they are covered by the Discrimination Act). disabled people). Employers are also required to make reasonable adjustments to help people with this disease do their work. In practice, however, it does not always work like that.

When a doctor announced to Bernie McCrea, at the age of 61, that she was at the beginning of the dementia, she was working as a caregiver for adults with disorders. learning. She says she was always shocked when she called the agency that had used her for zero hours. They told him that they were going to have someone to cover his positions in the future and asked him to return his uniform.

At first, she did not think much about the reaction of the agency. It was only in the days and weeks that followed, as the implications began to be felt, that she began to consider it premature.

"I was working normally – I did pretty well my job," says Bernie, of Newtonstewart, in Tyrone County. "I never had to complain, I was always available, day and night, I loved the work I did, I like working with people. Could have continued. "

This is a problem likely to take on importance. At present, about 50 million people worldwide have dementia and the number of cases is expected to reach 130 million by 2050 with the aging of the population.

Tony Bayer, professor of geriatric medicine at Cardiff University, quotes President Ronald Reagan, Prime Minister Winston Churchill, actor and television presenter Prunella Scales and Pratchett – who published two bestsellers after his diagnosis – as an individual – job profile at the beginning of dementia.

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Where to find help

Alzheimer Society

Carers UK

Dementia friends

UK age

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"Dementia is progressive, so unfortunately, there comes a time when work is no longer practical, but it progresses from month to year, it really depends on your trajectory, its implications for everyday life.

"The vast majority of people with early dementia are just as safe as you and I – maybe even more, because they can avoid dangerous situations."

Then there are the benefits that work can have on a person's well-being by providing him with routine, camaraderie and a sense of satisfaction – and of course, an income.

For Doug, the financial implications were serious.

His income "has gone from about £ 120,000 a year to zero," he says. The part-time job of his wife at a local post office is worth £ 500 a month, while Doug is entitled to around £ 1,000 a month in universal credit payments and personal independence. "This money does not really cover everything – we must always save and save," says Doug. In order to pay off their mortgage, they sold their home and downsized a property in Upper Rissington, Gloucestershire. He is still too young to claim his retirement pension.

He acknowledges that, as an entrepreneur, he has always been exposed to the hazards of a short-term job. Nevertheless, he would prefer to share his skills and contribute to the economy rather than ask the government for money.

"Even now, I have the feeling of having a lot to give.I still have all my knowledge and experience," he says. "All I can do now is stay fit and healthy and hope that dementia research will progress."

Follow Jon Kelly on Twitter @mrjonkelly

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