'Like anyone with a serious illness, there's an obligation to have special consideration within the workplace'
Nearly half a million Australians currently live with dementia. According to data from the University of New South Wales, by 2050 that figure will be close to a million, at a cost to the economy of nearly 3% of GDP. In 2022, it’s estimated that almost 1.6 million people in Australia are involved in the care of someone living with dementia.
Yet anyone who’s had experience of dementia knows that early signs of the disease are not always apparent. The average delay between the onset of symptoms and a diagnosis of the disease is approximately two years. Many people with dementia are reluctant to acknowledge that there’s anything wrong or, instead, find ways to cope with (and conceal) specific problems they may be having.
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At work, employees experiencing the onset of dementia could be struggling with tasks they used to find routine. Current flexible work practices, with more people working from home and communicating via conference calls, only assist in concealing the fact that employees may need support.
“For people living with a diagnosis of dementia, as well as their employer, it’s important to be transparent and have ongoing conversations about what’s possible as the condition progresses,” says Maree McCabe, CEO of Dementia Australia. “Like anyone with a serious illness, there is an obligation to have special consideration within the workplace.”
At the same time, it’s important to protect people’s privacy – not everyone in the organisation needs to know about the diagnosis. However, it can often be helpful for one or two trusted people to be key supports for the employee in question. Just ensure that you’re acting above board, and not broadcasting sensitive medical information.
“Inappropriately disclosing medical information can not only be a privacy issue but also can give rise to other work health and safety risks for employers,” says Julian Arndt, associate director at Australian Business Lawyers & Advisors. “It’s a fine balance between ensuring that there’s an awareness in the workplace that an employee may require certain accommodations and respecting the employee’s right to have their medical status kept private.”
Some of the changes that people might be experiencing while at work include difficulty communicating thoughts to colleagues or clients, trouble concentrating, forgetting important meetings or appointments. An employee may have difficulty managing several tasks at one time, they may prefer to work alone and avoid large groups; they may have lost confidence in their work abilities and feel uncertain about making important decisions.
“For many employees living with dementia, and their employers, it may be that it’s time to renegotiate working hours and duties to reduce workplace pressures,” McCabe says. “There may also be an opportunity for the workplace to introduce physical changes to the workplace to make it dementia-friendly. This can include clearer signage, improved lighting, colour contrasting on doors, etc. There are practical things you can do for people living with dementia to support their inclusion and engagement.”
Susan Raftery is an Advisory, Conciliation and Arbitration Service (ACAS) senior adviser who provides advice and training on best practice in employment relations in the UK. As with all health-related issues, Raftery says the most important thing is for organisations to develop trusting relationships so that employees feel able to approach their manager.
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Public stigma around cognitive and mental illness can contribute to worsening someone’s symptoms, so getting managers trained to recognise and support people with dementia and their carers is important. Managers may have to have very difficult conversations and “understand that employees who have been diagnosed with dementia will be fearful about the future as they will not know how their symptoms will progress,” Raftery says.
Training will also help managers understand and empathise with employees who are carers of people with dementia. There is enormous stress of seeing a loved one go through cognitive and behavioural change and carers may need time off work and adjustments to their working patterns to attend to a relative, as well as potentially needing emotional support themselves.
Organisations need to be careful they don’t breach anti-discrimination laws in their treatment of employees with early-stage dementia. Recent figures suggest that the discrimination towards people with dementia has changed very little over the last few years – something that HR leaders need to address.
“Dementia is a disability like any other which is protected by discrimination laws,” Arndt says. “Employers need to be extremely careful about making assumptions about the capacity of employees (or job applicants) who disclose a dementia diagnosis, particularly an early-stage dementia diagnosis. Like any medical issue, discussions and decisions between employees and employers need to be informed by medical evidence, not assumption.”
