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Skip to 0 minutes and 8 seconds So dementia is a global issue. And we know that the rising numbers of people living with dementia and having experienced dementia means that we’ve got more carers of people with dementia. And for the carers with dementia, it really has a personal cost. It has an economic cost as well, because people with dementia are often working at the same time. And some carers of dementia are older themselves. And so we’ve really got to look at how we can best equip people with the services, with the knowledge, and the products and services to help them to care better.

Skip to 0 minutes and 43 seconds And I think people that are caring for somebody with dementia also need to keep themselves connected to people and not always people in terms of dementia support groups and things, although that is very important and I would encourage people to access support groups. But separate from that, to continue as best they can even though it’s difficult with their own lives. I think just talking does help. I’m not saying that at the end of the day, you shouldn’t go in to your GP and talk to them about it. And certainly if you haven’t got anybody to talk to, you need to go along to your GP and just tell them how things are.

Skip to 1 minute and 28 seconds And they can point somebody toward you, just have a better talking therapy, even if it’s just to get it off your chest and to realise that there are thousands of others out there who are going through the same thing. I would say be kind to yourself. Be kind to the caregiver. That’s what needs to happen. And I would say to them, accept support, wherever that might come from, as long as they’re comfortable with doing that. And remember to be able to care for somebody else with a progressive illness, then you need to be cared for. And you need to be well yourself, both physically and mentally. So you can’t be a carer 24 hours.

Skip to 2 minutes and 15 seconds You need some time off to be an effective carer. And that’s a conversation I often have as a GP. Sometimes they’re aware of that and will put that in place themselves. Sometimes it’s not that they want or indeed should have permission, but it’s almost permission to have that conversation, to allow them to think slightly differently. It happens. So I really encourage families to make sure they fit in some time for themselves, either head space time or something that they can feel that’s relaxing and not think about things to then come back. So caring for someone with dementia, particularly in later stages, can be a very physically and emotionally demanding role and almost 24/7.

Skip to 3 minutes and 5 seconds And most of us can’t function that way without some time to ourselves. So it is really important that families factor that in. And that will give them the strength to carry on. So perhaps having a walk or meeting a friend for a coffee or some simple things like that to factor in can help. People just recharge their batteries I guess to keep on going. I think if you have a plan with when you’re going to go shopping or just sit and relax at home, I think it works much better, and you’re less likely to become burnt out. There has been a time where we’ve been advised to just take a carer’s break, pop Mum into respite.

Skip to 3 minutes and 53 seconds And we just switch off, stay at home, but do things for ourselves. Try to put ourselves first, which isn’t necessarily easy. Resilience is probably the biggest thing that the carer needs to maintain. And how they maintain their resilience, again, it’s very person centred. But it might be that an enabler for a couple of hours twice a week enables the carer to go out, have fresh air, have a walk without watching the clock, without having to constantly be vigilant for that time. With support, with advice, with help, you do get through it.

Looking after you

We know that thinking about your own needs can sometimes be difficult. In this video our family carers and healthcare professionals encourage you to recognise your own needs. They suggest some ideas to help you to cope with the physical and emotional demands of caring.

  • What ideas to do you have for making time for yourself?
  • Who do you turn to for support?

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This video is from the free online course:

Dementia Care: Living Well as Dementia Progresses

Newcastle University