Employees with early onset dementia face discrimination at work

Academic study finds ‘no real will’ among organisations to make reasonable adjustments for diagnosed workers

Employees with early onset dementia face a lack of workplace support and early dismissal, with those in lower-paid jobs most affected, according to new research.

A study into the management of employees who developed dementia between the ages of 30 and 65 years, published today in the scientific journal Occupational Medicine, found those living with early onset dementia were not being offered reasonable changes to their roles that could have allowed them to continue working.

The study found reports of poor management styles in dealing with dementia, low levels of colleague support and in some cases “no real will” within organisations to find individuals suitable jobs for their remaining skills level, with many being laid off from contracts or dismissed without consultation.

It said those in low paid or manual jobs were more likely to experience an “all or nothing” response to their diagnosis from their employers and often faced dismissal quicker than those in higher paid and non-manual jobs.

Dementia is a collection of symptoms that result from damage to the brain and can be caused by different diseases including Alzheimer’s. Symptoms vary but can include memory loss, mood changes and difficulty carrying out familiar tasks.

Although widely considered to be a age-related affliction, in the UK there are around 42,000 people under the age of 65 who have been diagnosed with dementia, many of whom were employed at the time of diagnosis, according to charity YoungDementia UK.

Dr Richard Heron, an occupational physician and one of the study’s co-authors, said a dementia diagnosis does not change a person’s capabilities overnight. With the right support and occupational advice, many people are able to continue safe, healthy and productive employment beyond their diagnosis.

“With earlier detection and anticipation of more effective treatments on the horizon, a diagnosis of early dementia should not mean the immediate end of a working life,” he said.

Heron added a stigma remained around dementia: “The ‘D’ word, dementia, is perhaps becoming as feared as the ‘C’ word, cancer,” he said.

Professor Tom Dening, another of the study’s co-authors and professor of dementia research at the University of Nottingham, added understanding more about dementia, in the same way understanding has increased around physical disabilities, would help employers take “a more measured response” when they are informed of an employee’s diagnosis. 

Gavin Terry, head of policy at the Alzheimer's Society, reminded employers the Equality Act protects employees with medical conditions including dementia from discrimination. He told People Management: “If someone wants to stay at work, they have the right to reasonable adjustments to empower them to do so.”

Terry encouraged employers to openly discuss dementia with their staff, and said while it it might be difficult for someone to speak to their employers about a dementia diagnosis, letting employees know they will be protected from unfair treatment can help them to plan for their future and help break down the stigma “that still sadly exists”.