One in three people born in the UK today will develop dementia in their lifetime and there are currently around one million people with dementia in the country. And, with an ageing population meaning people are working longer, that means employers will likely see a rise in employees receiving diagnoses.
In fact, the 2018 Working with Dementia Report, funded by the Alzheimer’s Society, found that people with dementia often first notice symptoms while at work. For instance, common first signs are missing meetings, misplacing equipment, communication difficulties and problems remembering instructions.
However, an even greater number of employees will be touched by dementia because a loved one develops the disease: one in two people in the UK will be affected by dementia – either developing it themselves or caring for someone with the condition, or both. All these figures are according to the Alzheimer’s Society.
Employers are taking action on dementia
Progressive employers are responding by putting on training for employees about the condition, to raise awareness, understanding and empathy both for sufferers but also carers.
During the recent Dementia Action Week (18 – 24 May), the company tend® , which trains health and social care workers to look after people with dementia, called on employers and the government to invest in “urgent action to close the dementia care workforce training gap”.
Gareth Reichers, Director of Growth and Partnerships at Impact Futures Group, the parent organisation of tend®, addressed employers directly by saying:
“Dementia awareness should not sit solely within care settings. As more people balance work with caring responsibilities, employers have an important role to play in creating environments where people feel able to ask for support and where managers know how to respond sensitively.”
Line managers need to understand pressures
He explained that doesn’t mean that line managers should be expected to diagnose dementia, but it does mean they should understand the specific pressures that many carers may be facing and recognising when they may need additional support.
Some organisations have a much better understanding of these pressures than others. As you’d perhaps expect, the Alzheimer’s Society is ahead of the curve, offering its employees five days of carers’ leave each year, alongside compassionate leave and a range of family-friendly policies.
It also uses a ‘My Adjustments’ document, which facilitates open, supportive conversations about what makes a difference to each individual. When it comes to supporting employees who are caring for relatives with dementia specifically, Wellbeing Lead at the Alzheimer’s Society, Bev Baxter, advises:
“I would really encourage employers to take the time to get to know their people, to understand what matters to them and the responsibilities they may be balancing outside of work. When you have that understanding, you’re much better placed to offer support that genuinely meets individual needs.”
An open culture is crucial
But, as she points out, just as important as the actual policies is the workplace culture and creating a place where employees “feel safe to be open”: “We don’t want employees to feel that their caring responsibilities are something they have to hide, or manage alone.”
Pam Kehoe is the Lead Admiral Nurse of the Dementia at Work Team at Dementia UK. Run by a team of Admiral Nurses, the Dementia at Work programme provides specialised support and guidance to employers, helping them implement effective policies and practices to accomodate the needs of employees affected by dementia.
Kehoe says the most important thing to understand about dementia is how unique it is as a condition:
“No two people ever experience the same symptoms and journey and employers must take this uniqueness into consideration. That’s why we are very bespoke in the way we work with employers.”
A tailored approach to dementia
Typically, Kehoe and her team at Dementia UK will work with an organisation to identify the key issues and build on them via tailored sessions which relate to that particular need. It could be best served by a fireside chat approach, open to all, or a specialist clinic set up in the workplace, for example.
Overall, Kehoe says she has been “blown away by the support from so many organisations and the interest and passion to want to make a difference and make their workplaces much more dementia inclusive”.
She’s heartened by the fact that when an employer has an employee that has developed dementia typically she finds they “don’t just want to retire that person, they want to support that person to continue working”.
Carers feeling overwhelmed
The other trend she has noticed is less positive: many carers supporting people with dementia are feeling overwhelmed with this responsibility alongside their other pressures.
“At times they can completely lose their identity,” she says. “This is often made worse if they have to give up work because of their caring responsibilities. That’s why it’s such a privilege to work with organisations to put things in place to support employees to keep working by making their caring role much more doable.”
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