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Skip to 0 minutes and 7 seconds Many of you will be combining caring with paid employment. The peak age of caring often coincides with the peak of an individual’s career, between the age of 45 and 65. Caring for someone living with dementia whilst in employment brings a lot of uncertainty, as the situation can change from day to day. You may find that your working hours are disrupted when accompanying someone to health appointments or when making care arrangements by telephone. Sometimes, you may need to leave work at short notice to deal with a crisis. If you are worn out from caring at home, you come to work with less resilience, so that relatively minor work challenges move from being manageable to stressful.

Skip to 0 minutes and 54 seconds And the progressive nature of dementia means that more care support will be needed as time goes on. We spoke to some carers about their experience of juggling care and work, and of speaking with their employers about caring for someone living with dementia.

Skip to 1 minute and 14 seconds The biggest challenge you face as an employee is having this time to fit both work and caring responsibilities into your life. That was the biggest challenge for me. In the early days of my mum being diagnosed, I was working full-time. My mum needed instant care when she was wandering. I needed to work with doctors, social workers, social services, occupational health workers. And having all of that on top of being full-time was extremely stressful. So time, I would say, is this the biggest challenge, especially in the early days before we managed to get things settled down.

Skip to 1 minute and 55 seconds Because it’s not just actually being there to support the person that you are caring for, it’s all the other appointments and demands on your time. Hospital appointments– and my grandmother developed other conditions. She developed cataracts. So, of course, there were other appointments as well as GP and those in relation to her dementia. Say my mum could ring up at any time and say, I’m not well. I don’t know where I am. Or a neighbour could ring and say, she’s in the garden. She’s wandering around. And having to just leave and– I mean, it’s just stressful, very stressful, because I am a conscientious employee. I want to do the best I can.

Skip to 2 minutes and 40 seconds But she’s my mum, and I have to leave when I have to leave. It was quite difficult juggling both roles. Obviously, the caring responsibilities– wanting to be a good carer and wanting to care to the best of my ability and make sure that my grandmother was looked after properly. But also, juggling the responsibility to my employer, wanting to be a good employee, and do a job to the best of my ability, and do that job really well. So there was the conflict between the two, which I found was one of the major issues. It’s very patchy, and it depends on– all managers are busy.

Skip to 3 minutes and 21 seconds But I think they need to be taking time out to be, familiarising themselves with these issues because it’s becoming more and more common. And I’ve got colleagues in the same position as me now, and that is just going to grow ever more common as the population ages. There’s a lot more information now on dementia. As I say, I have some other colleagues who are supporting relatives with dementia. So it’s talked about more. It’s certainly talked about more now than when I was initially taking on the responsibility for looking after my grandmother. There’s a greater awareness now, but I still do think there’s some learning to be done.

Working and caring

In this video, we spoke to some working carers about their experience of juggling care and work.

Around half of the six million carers in the UK combine paid work with caring responsibilities - over two million carers work full time, and one million work part time. Approximately one in ten of these employed carers are caring for someone living with dementia. Many carers take on their caring responsibilities at the peak of their career, aged between 45-65 years.

If you are working and caring, this can have an effect on your health and wellbeing, and on your career. Caring for someone living with dementia brings uncertainty as the situation can change day to day. The progressive nature of the disease means that more support may be needed as time goes on.

We asked working carers what the key issues were for them:

“I don’t think it’s fully appreciated how stressful it can often be”

“At times I have little energy to switch to the caring role after work”

“I think it’s just the stress of being pulled in two directions”

“I didn’t want to let my job share partner down”

“I have taken a job because of convenience, not in my chosen career”

Despite the challenges, carers have told us that keeping in work can be a positive goal - it provides an income, a sense of identity other than being a carer, and helps to maintain important social connections.

Your employer may be able to offer small or temporary changes that can help meet immediate needs, such as a private space for necessary telephone calls, flexibility to allow you to change shifts when needed, work from home or special leave to deal with emergencies. When balancing work and care becomes more difficult, you may wish to consider options for longer term changes, such as formal requests for flexible working.

Care organisations and other family members may also be able to provide advice, respite or practical support. Working in partnership with others rather than dealing with everything yourself is important for avoiding fatigue.

What is your experience of working and caring?

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This video is from the free online course:

Dementia Care: Staying Connected and Living Well

Newcastle University

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