Dementia is a growing issue and one which many families will experience. With people retiring later and more women – traditionally the carers – now in work, its impact on the workplace has not yet been fully realised. Nevertheless, in the US it has been highlighted as one of the leading causes of women dropping out of the workplace.
Pathways Through Dementia and RemindMeCare have organised a conference in London on 20th May entitled Creating Dementia Carer Friendly Workplaces to address the kind of support available for employees and employers.
Those taking part include former Business Secretary Vince Cable, Sara Wilcox from Pathways Through Dementia, Mary Sherwood – who will speak about setting up dementia-friendly workplaces based on her experience at the Met Office – and Employers for Carers. They will cover both practical support and research.
Sara set up the charity Pathways Through Dementia in 2013 after working for the Alzheimer’s Society for seven and a half years, five of them as the Legal and Welfare officer. She ran the Society’s legal helpline and delivered training sessions, mainly on the Mental Capacity Act.
She also did shifts on the Society’s general helpline. HR manager Vos Kels from the mining, metals and petroleum company BHP Billiton, rang her up one day and asked if she could do a talk on the dementia timebomb and the implications for the workplace.
Sara volunteered to give the talk and when she went on maternity leave from the Society, the legal helpline and training work she had been doing ended.
She remembered the HR lady and decided to set up a charity offering free talks to businesses in the lunch hour and to carer groups, the Athena Business Network and dementia charities as well as restarting the legal helpline.
Her specialism is providing legal information, such as paying for care and issues around power of attorney – she used to work at the Court of Protection, which makes decisions on financial or welfare matters for people who can’t make decisions at the time they need to be made.
In addition to her free helpline she responds to emails referred to her by the Alzheimer’s Society and other groups, pointing out what a person’s options are, but never telling them what they should do. “It can be hard for people to know where to look to find the answers to these complex issues and I can answer them,” she says.
She adds that it can be difficult to take in complex information when you are very stressed which is why email can sometimes be better than the phone.
Most of the people who contact her are women looking after relatives with dementia. Even at the Alzheimer’s Society she says it was mainly women who rang for support – either partners of people with dementia or daughters.
She doesn’t know why men who have partners with dementia are less likely to come forward, but says it is interesting.
She remembers one employer who ran a carers support group for men which no-one came to. When the name was changed to dementia information session that changed. She adds that many people, particularly those who do not live with the person they are looking after, do not regard themselves as carers.
Pathways Through Dementia functions on a shoestring budget. Sara says it can be hard to get the message through to employers that they need to think about how they support their employees who are caring for relatives with dementia and that this is a problem that will increase as the retirement age goes up.
As people leave it until later to have children, many are stuck in the so-called sandwich generation, with caring responsibilities for both young children and elderly parents.
The Positive Ageing Company has a calculator on its website which shows the annual cost to employers of days lost due to people caring for relatives with dementia.
If they employ 200 people it calculates the cost of lost days at £24,000. If they employ over 10,000 people it is over £1m. The impact in terms of retention is one that seems difficult to quantify as many people don’t tell their employers why they are leaving.
Sara, whose grandmother had dementia meaning her mum had to take two years out of work, says around 850,000 people in the UK has dementia.
That number is set to rise to one million by 2025. She adds that many people who are affected find it hard to talk about it and says it can be worse when someone is at risk, but is capable of resisting offers of help because they cannot see how at risk they are.
She thinks employers need to be more aware of and understanding of the kind of issues carers might be facing.
“It can be hard to imagine what it is like,” she says. “It brings up all sorts of legal, emotional, practical and other issues such as family dynamics. It’s terrible what it can trigger. Employers who understand the challenges will be better placed to support employees going through it.”
*To find out more about the Creating Dementia Carer Friendly Workplaces conference, click here.