Dementia at work is likely to become an increasingly common occurrence due to the ageing population and the fact that one in three people born in the UK today will develop dementia in their lifetime (see this feature for background on the condition and how it’s typically picked up at work).
More progressive organisations are now taking steps to raise awareness of the condition, in this feature we case study two: The Royal Town Planning Institute and the Charity for Civil Servants.
Case study 1: The Royal Town Planning Institute
Challenge:
As a professional membership body, the RTPI’s Head of People, Governance and Compliance, Lesley Mitchell, was mindful that her organisation should be setting a good example when it came to dementia awareness. She was also acutely aware of the huge impact of caring for someone with dementia, having been involved in her father’s care.
“Membership organisations have to lead by example because you’re potentially having a ripple effect right across the industry so we need to make sure that we’re practicing what we preach,” she says.
The turning point:
One of the RTPI’s members is a Dementia Friends Ambassador – Dave Westhead – and offered to run an awareness session. This, coupled with the fact that Mitchell understood what a difference employer support had made to her caring experience, prompted her to take action and book a session.
“Dementia is such a horrible disease, and such a difficult experience to go through, and the RTPI was brilliant to me during my dad’s illness and that made such a difference,” she says.
Strategy to address challenge:
Mitchell wanted the session to raise awareness of dementia in general, but also help colleagues appreciate what carers might be going through. She also wanted to help managers understand better what their team might be experiencing, if caring for a loved one with dementia.
She believes the first step is creating a culture where it feels safe to speak about dementia, which is why the awareness session was prioritised.
This was a “bite size” 45 minute session which didn’t take up much of employees’ time and didn’t require much administration.
“The important thing for me was showing that we can talk about things like dementia at work,” she says.
“Even if we have policies, I think colleagues still quite often feel apprehensive speaking up about needing some time for caring. So this session was to send a clear signal that we want to support employees in this situation.”
The Dementia Friends awareness sessions focus on learning more about dementia and small ways that individuals can be supportive. Again, Westhead says one of the most important points to get across is that everyone’s experience of dementia is very individual.
Barriers and obstacles:
There are certain myths and stigmas surrounding dementia.
Like Westhead says, there’s a myth that dementia only happens to “older people”:
“We try and dispel that myth, because young people can get dementia too,” he says.
He adds that stigma is often an issue, too. This is borne out by the stats that 46% of people living with dementia don’t feel part of society and 33% have stopped going out altogether.
“We need to change the image of dementia so people can feel part of society,” he says. Better awareness of the condition is the first step.
Results and impact:
While no formal measurement of the webinar’s effectiveness was undertaken, Mitchell says that there’s anecdotal evidence that it has created a more safe space for colleagues to ask questions, reflect and discuss dementia and the impact on them.
Future vision:
Potentially in future Mitchell is considering a session on how employees can spot dementia symptoms in themselves, and others.
Biggest bit of advice to other employers considering dementia awareness sessions:
“Just go ahead and commission a session,” says Mitchell. “There will be many people in your organisation that have been impacted in some way by dementia who would value it and plenty of colleagues who would be interested in finding out more.”
“An awareness session takes between 45mins and an hour, which is does not take much out of work time to dispel the myths and untruths, find out that there is a person behind the dementia and that everybody will have a different journey with dementia,” says Westhead.
Case study 2: Charity for Civil Servants
The Charity for Civil Servants supports current, former and retired civil servants facing difficulties from mental health struggles to financial worries.
Challenge:
The lack of awareness around the support that can be accessed for people with dementia, and those caring for friends/family with the condition.
For instance, while there’s good general awareness now of ‘Macmillan nurses’, who support people with cancer and their families, the dementia equivalent – ‘Admiral nurses’ – are much less well known.
The turning point:
In 2018, the charity noticed, via its ‘Carers Passports’, that carers in the workplace were struggling due to their extra responsibilities.
Carers also lacked the energy and time to research the help available to them. The main problems experienced were lack of information and good advice, particularly regarding how to access support.
Strategy to address challenge:
The charity worked with the Dementia at Work Team, at Dementia UK, to experiment with various approaches that would work best to raise awareness of dementia support in the workplace.
For example, one to one sessions were offered in various civil service offices across the country. These sessions were then followed up with another three months later, then six months later.
“These sessions were really successful,” says Linda Eades, Head of Caring, Health and Wellbeing Services at the Charity for Civil Servants. “Before this, if people wanted to ask for support, they’d have to do it on weekends or evenings outside of work.”
The challenge of scaling the solution:
After this preliminary success, the Charity had to work out how this solution would work at scale.
“The civil service is huge and it operates across the whole of the UK, as well as some other countries too,” says Eades. In conjunction with Pam Kehoe, Lead Admiral Nurse for Dementia at Work at Dementia UK, the charity came up with a model that could be rolled out.
They created a booking system where people could book one to one appointments with the Admiral Nurses, regardless of location. Alongside these, they offered workplace awareness sessions.
These sessions usually take the form of a ‘Masterclass’ which lasts around 45 minutes and explains what it’s like to experience dementia. After this, there’s also an opportunity for anyone to ask questions.
What employees want to hear about dementia
“There’s no point talking about the anatomy or physiology of dementia because people want to know what it’s actually like to have dementia,” says Kehoe.
“They also want to know what you can do to support people with dementia and tips on communication.”
Often these sessions, particularly the Q&A, would identify topics of interest that could be expanded on in future.
Working with HR and line managers
In addition to this, Dementia UK worked alongside the HR teams and line managers to enable them to understand the implications of dementia in the workplace. For instance, they’d advise on reasonable adjustments that could be made to help support someone with the condition to continue work as long as possible.
“It’s important to make the person still feel valued in the workplace for as long as they are able to work, because obviously dementia is a progressive condition,” says Kehoe.
“We can work with HR teams to ensure their processes and procedures are reviewed and appropriate to meet the needs of employees that may be affected by dementia in some way.”
Barriers and obstacles:
Dementia UK believes that the most effective way to deliver this sometimes-sensitive information is face to face. However, that’s not always possible, especially with such a large, disparate organisation. The challenge with online delivery is conveying the information in a way that keeps the audience engaged and doesn’t overwhelm them.
Future vision:
Charity for Civil Servants will continue to work with Dementia at Work. Alongside increasing reach, the partnership will continue to prioritise quality, clinical governance to ensure sustainable, high-quality support for working-age people affected by dementia.
Results and impact:
“People have been really open to learning and talking about their experiences, which has built a sense of community among carers, who can often feel isolated,” says Eades.
Also, Dementia at Work’s results show that 94% of people reached by the team are of working age.
Advice to other employers:
“Don’t wait for dementia to become visible before you act,” says Kehoe. “Assume it is already affecting your workforce and your customers, and create an environment where people can get support early.”
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