Small reasonable adjustments are often all that's needed to enable people with dementia to carry on working, according to Sally Copley, director of policy, campaigns and partnerships at Alzheimer’s Society.
Speaking on a panel at a Dining4Dementia launch event, Copley explained that there are around 40,000 people of working age (below 65) in the UK living with dementia, many of whom want to and are capable of continuing to work.
Through the Alzheimer’s Society's helpline, Copley said she hears “stories where people have had wonderful support so they are facilitated to carry on working”, but others where people "tell their employer they have dementia and are shown the door”.
“Employers have to take responsibility as just because [someone] has been diagnosed with dementia doesn’t mean they lose their rights,” she said, adding that employees with dementia don’t want “additional rights, just normal rights”.
Further reading
Stephen Bevan: Dementia should not be a barrier to work
Why business should become more dementia aware
Working beyond 65 can stave off dementia and Alzheimer's
The event launched Dementia Action Week, during which Alzheimer’s Society is calling on employers, communities and individuals to create a more inclusive society for people living with dementia.
Alzheimer’s Society has teamed up with 10 restaurants, including Humble Grape and TGI Fridays, for its Dining4Dementia campaign. This involves people living with dementia buddying up with restaurant staff and volunteering front of house. The aim is to demonstrate how employers can include people with dementia in the workplace and to dispel perceptions that they're unable to contribute to the workforce.
Dining4Dementia comes ahead of the launch of a new Channel 4 TV series The Restaurant That Makes Mistakes, which saw 14 volunteers – all diagnosed with dementia and all working-age individuals – staff and run a restaurant headed up by Michelin-star TV chef Josh Eggleton.
Speaking on the panel, one of the volunteers on the TV programme Sue Strachan shared how “living with dementia [she] hadn’t realised how isolated [she] felt until [she] went to work at the restaurant” where there was a “feeling of team spirit”.
Strachan explained how small adjustments enabled her and her colleagues to work effectively. She gave the example of a colleague who struggled to remember which drinks should go in which glasses or which cutlery to use. She explained how simple changes like labelling drinks, glasses and cutlery drawers made this easier.
“We just had to think about reasonable adjustments like labels,” Eggleton said, adding that he “didn’t treat the volunteers any differently to any of [his] staff”. He added that he learnt from the experience that these adjustments could be easily taken back into his business: “People living with dementia can work within any business as long as they are supported.”
“What needs to happen is for employers to be more aware of what dementia is and understand what needs to be done,” said Eggleton. “It’s about getting employers willing to listen and willing to work with people to make this happen.”
And if the employee isn't able to continue in their position “find another role in the business that works”, he added.
The changes employers are having to make are small, agreed Sarah Lazenby, Channel 4’s head of features and formats and commissioner for The Restaurant That Makes Mistakes. “[A diagnosis] shouldn’t mean the end of their career,” she said. “People are really giving to society but because of their diagnosis they lose confidence or their employer does not adapt.”
She recounted how one volunteer said that if they broke a leg their employer would build them a ramp, but with a dementia diagnosis “people are scared of dealing with it and don’t know how to”.
“The key is to listen to the person,” said Strachan. “Don’t find out what they can’t do, find out what they can do. Listening is key – we can all tell you as we’re the experts.”
More education is needed to show employers and wider society that people living with dementia can continue to work, she added: “So when people hear the word dementia they won’t think ‘oh they can’t do this’”.
Alzheimer’s Society’s campaign coincided with the launch of research that found around 120,000 people are living alone with dementia in the UK, with this number set to double to 240,000 by 2039.
Its survey of 354 people with dementia revealed that more than half (58%) experience loneliness and isolation (56%) and are losing touch with people since being diagnosed (56%).
People were also found to be concerned about other people’s perceptions. Almost one in six (15%) admitted they don’t do certain things because they feel they won’t be welcomed or accepted, while a quarter (24%) said that some friends are in the dark about their diagnosis.
Separate research from YouGov, which surveyed 2,195 adults (of which 2,174 did not have dementia), supported these concerns; showing that people often underestimate the capabilities of people with dementia. Thirty per cent said they assume they have to stop working, 33% said they would be surprised if served by someone with dementia in a supermarket, and 25% said they believed people with dementia must have regular supervision from a carer to go about their daily lives.
