It’s impossible to put a figure on the human cost of dementia. With the total affected expected to hit 1 million across the UK by 2021, increasing numbers of us are touched in some way by the condition.
Yet while the personal toll can’t be quantified, the impact on businesses and the economy is starting to be uncovered. A recent report by the Centre for Economics and Business Research claims that businesses in England are losing out to the tune of £1.6bn a year because of carers – more than half of whom are in work – having to reduce their hours or give up their jobs entirely to look after a relative or friend with dementia. Early retirement of those diagnosed with dementia is estimated to cost businesses a further £627m a year. Then there’s the “dementia pound”: households living with dementia have a total spending power of £11bn per year on goods and services. But many of them struggle to get support from banks and shops and nearly a quarter of those with the condition have given up shopping altogether.
So what can businesses do better to reduce this economic hit – and more importantly to give their employees, their families and their customers the support they deserve? That was the subject of a roundtable discussion hosted by the Guardian and sponsored by Public Health England on behalf of the Dementia Friends campaign, which has been developed in partnership with Alzheimer’s Society.
The debate heard how the Dementia Friends initiative, which aims to sign up 1 million people through its online resources, face-to-face awareness sessions and corporate commitments to learn more about dementia, was helping to spread the message to make society more supportive. “We have a golden opportunity now to shift society,” said Justin Varney, consultant in public health medicine for Public Health England. “If we get it right for people living with dementia and their carers as customers and employees, we get it right for everyone.”
The role of business
Yet the reality is that although awareness is growing, there’s still a long way to go. Prof Maggie Pearson, dean of the College of Health and Social Care at the University of Salford and chair of Salford’s Dementia Action Alliance, said she was surprised when some local businesses didn’t want to get involved in her area’s bid to become a dementia-friendly community. “I was shocked they couldn’t see a benefit and thought it was all a bit of a nuisance,” she said.
Those attitudes mean, according to Ming Ho, a carer and member of the Dementia Action Alliance Carers’ Call to Action, that people with dementia often find it impossible to do things the rest of us take for granted. “The physical environment in town centres, banks, pin numbers – these are all things that exclude people from engaging with normal life, from going to the cinema or to the shops,” she said. “There needs to be more awareness because even if you are capable now, you might not be in 30 years’ time.”
Some businesses are starting to think of how to make their services more dementia-friendly. The roundtable heard, for example, how BT had introduced specific products such as an answerphone, which could play messages back slowly for people who might otherwise struggle to understand what was being said. And Graeme Whippy, senior manager for the group disability programme at Lloyds Banking Group, explained how his bank had signed up to a dementia-friendly financial services’ charter. “In financial services, you walk a tightrope between giving people with dementia independence and access to their money while protecting them against fraud or abuse,” he said. “We recognise it’s a challenge and we need to work for consistency of customer service.”
In many sectors, there is work being done to educate staff. Eileen Sills, chief nurse at Guy’s and St Thomas’s trust and London clinical director for dementia, explained how training could be “transformative” in helping staff to engage better with those with dementia. “We’ve seen it’s the smallest things that make the biggest difference – the smiles, the eye contact, the time,” she said. “If you go in and instruct a business, I don’t think it works. You have to go in and ask them to understand.”
On the workplace side, there was agreement at the debate that more could and should be done to support employees with dementia and those who are carers. Paul Litchfield, chief medical officer at BT Group, pointed out that patchy diagnosis rates mean many of those in the early stages of dementia aren’t getting the support they need. “One of my biggest worries is that there are people going through their performance procedures who are actually in the earliest stages of dementia,” he said. “From an equity point of view that just seems wrong to me but we need the tools to address it. With earlier diagnosis, we will make the adjustments and keep people in employment as long as we can and as long as it is right for them.”
Pearson added: “Unlike some other disabilities dementia is a challenge because it’s not visible – that invisibility means that with gradual onset it’s very difficult for employers to respond.”
So employers need to work hard to encourage their staff to feel supported to talk about their concerns, both before and after diagnosis.
Clare Kerr, head of external affairs at Lloyds Pharmacy, added: “People are really frightened of telling their bosses. It’s really important employers create an open environment where it can be talked about.”
George McNamara, head of policy and public affairs at Alzheimer’s Society, said more openness would help challenge the stigma of dementia. “If there was a business leader who was diagnosed and wanted to continue to work and people knew that, it would challenge attitudes and I am sure others would come forward,” he said.
So will the business community rise to the challenge of better supporting both employees and customers affected by dementia? On top of a commitment to training and initiatives like Dementia Friends and dementia-friendly communities, there are other practical measures which might help, the roundtable was told. They include bigger companies supporting smaller ones by offering access to their occupational health teams, and also public bodies asking companies about their work on dementia as part of the public sector procurement process. “Simply asking the question across the public sector as a whole would shift the country over a year because the purchasing power of public sector is so huge,” said Varney.
Then there’s the use of new technology. “We know the right technology transforms lives – we have to think much more imaginatively on this,” said Mark Kinirons, a consultant at Guy’s and St Thomas’s and clinical lead for dementia.
“There’s huge potential with technology and it doesn’t have to be expensive but it’s no good on its own. It has to be linked to someone who is reacting to what the technology says and that’s where the business case comes in,” said Karen Taylor, research director at the Deloitte Centre for Health Solutions.
And beyond that, participants at the event wanted to see a continuing commitment from politicians and policymakers to putting dementia at the top of the agenda. Then there would be grounds for optimism that, with national buy-in, both employees and customers affected will get a better deal.
“There are reasons to be cheerful – the push with Dementia Friends is really important,” said Litchfield. “And the societal changes are going to make things happen in this space. As the numbers with dementia increase more and more, people will have experience of this and as the workforce ages we are going to see more people in work with dementia. That is going to force attitudes to change.”
“There’s a real appetite to make this work – businesses, trades unions and others recognise that this is a live issue and want to work with others to find solutions,” said McNamara. “There’s a huge amount of optimism but it still requires leadership and integration across the system.”
Key discussion points
How can businesses help meet the dementia challenge?
• By educating: dementia may be on the increase, but understanding is still worryingly low.
• By encouraging dialogue: a supportive atmosphere will help employees get the help they need at an early stage.
• By designing products to meet the needs of a population where dementia is on the rise – and making the best use of technology.
• By displaying leadership: the public sector and larger businesses can both take a lead in helping smaller businesses become more dementia-friendly.
At the table
David Brindle (Chair) public services editor, the Guardian
Clare Kerr Head of healthcare development, Lloyds Pharmacy
Prof Maggie Pearson Pro-vice- chancellor, dean for college of health and social care, University of Salford
Justin Varney Consultant in public health medicine, Public Health England
Karen Taylor Research director, Deloitte Centre for Health Solutions
Dr Paul Litchfield Chief medical officer, BT Group
Mark Kinirons Consultant physician in general and geriatric medicine, Guy’s and St Thomas’ hospital
Eileen Sills Chief nurse and director of patient experience, Guy’s and St Thomas’s hospital
Ming Ho Writer, carer and dementia campaigner
George McNamara Head of policy and public affairs, Alzheimer’s Society
Graeme Whippy Senior manager, group disability programme, Lloyds Banking Group