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Skip to 0 minutes and 7 seconds So I think really it’s relying on your health carers to just be there in backup support. Admiral nurses from the hospice, they’re great. They’re there. They’re at the end of the phone. You can ask them any question you need to ask. And they will give you the help that they can at the time. So never be afraid to ask a question. That’s my important thing. Don’t be afraid to ask. Don’t think, oh, I’d better not bother them. Bother them. That’s what they’re there for. Accept help. If you have friends or family that offer to help and to give you a break, I would take it.

Skip to 0 minutes and 50 seconds I think there’s a tendency, particularly if it’s a couple, and you’ve been together a long time, it’s hard to let some other people in, whether that’s paid carers or family members, because you want to do it yourself. I think that’s what my mum wanted. She wanted to do it herself. She wanted to be there and to do it all. But the thing is, you can’t. You actually can’t. Nobody can run a 24/7 care home on their own with no holidays and no breaks. And that’s how it will be towards the end. That’s maybe a tough thing to hear, but I do think, if we talk about this at earlier stages, then you can actually put some things in place.

Skip to 1 minute and 35 seconds We went to a dementia awareness course at a carer centre, which I particularly found quite useful. There is a common perception of dementia of people just losing their memory, but there’s much more to it than that. And the course gave me some insights into, to some extent, what to expect, but also the nature of what dementia is like and what it’s about and how it affects people. My advice would be just to remember that you’re not alone. And it’s such a massive change to not only their life, but, obviously, the family’s lives as well. And just to not feel like they’re on their own, and they have got a massive support network out there.

Skip to 2 minutes and 28 seconds Speak to the health professionals involved around your relative. See where they can signpost you so you can get information so that you are empowered about what might happen and where your relative and you would want to influence that.

Skip to 2 minutes and 47 seconds I would encourage you to look at websites and support sites. And it depends upon your GP’s practise to some extent. So very often, I’ll have a patient with dementia, and their relatives aren’t my patients. I offer them an appointment. I’ll say come and speak to me if you’re worried. Come and see me. Book the appointment in your mum or dad’s name, and I’ll see you. From the care home, they can come and speak to the manager at anytime. There’s an open-door policy. There’s your clinical nursing staff, your care staff. There’s your GPs. We have a fabulous hospice who have an Admiral nurse in Alnwick who are always helpful with advice.

Skip to 3 minutes and 31 seconds We have charities, and a list phone numbers who they can contact. Taking breaks, recognising when you need a break– and I think it’s useful to talk to professionals. They can give clinical advice. But I think talking to people that are going through the same thing is really helpful. Support groups are usually helpful for people– just saying my mum or dad does this. Yeah, so does mine. And you can get a bit of insight into what’s happening in the future, people in later stages of the illness. Or you can help people and say yes, my dad done that last year and reassurance for each other. This happened with my dad. It was short lived. And he quickly moved onto this.

Skip to 4 minutes and 14 seconds As a GP supporting families caring for someone with dementia, one of the most important things I’d say to them is to recognise that their health is equally as important as the person with dementia. They must look after themselves because, if they’re ill, then they can’t look after that person. That they must seek out as much information about the illness and sources of support as is possible, and that they have someone. It might be the GP, it might be a social worker or a dementia nurse or advisor who acts as their key care coordinator or care worker who they can turn to to help them in coordinating care throughout the illness.

Strategies and support

In this video you will hear advice and tips on how you can look after yourself and seek support from others.

Our family carers and healthcare professionals explain why it is important to take care of yourself and who can help you to cope with caring as dementia progresses. In the following steps, we will also guide you to some helpful resources (Step 3.10) and discuss how technologies can be useful sources of support (Step 3.11).

Some tips

  • Talk to healthcare professionals and don’t be afraid to ask them questions.
  • Accept help from friends and family when it is offered.
  • Breaks are important – no one can provide care 24/7 alone.
  • Having difficult conversations early can help as times get harder.
  • Try to find out if there are any dementia awareness courses near you.
  • Look for websites or groups which offer support and reassurance.
  • Recognise your health is as important as the person/people you are supporting or caring for.

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This video is from the free online course:

Dementia Care: Living Well as Dementia Progresses

Newcastle University