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.


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.

“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.


Why should I stop working just because I have dementia?
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