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Skip to 0 minutes and 8 seconds Achieving comfort for people with advanced dementia is very important because they can’t communicate when they’re in distress. What we need to do is recognise who’s involved in their care and the importance that they all have. The family carers are particularly important, even if the person’s in a nursing home, because they know that person best of all, and they know their moods and their behaviour, and they know when something’s wrong. It’s, therefore, important for anyone involved in the person’s care to be able to watch the person clearly, to understand what they’re normally like, and to communicate and to share their views with the health care professionals involved in providing comfort.

Skip to 0 minutes and 53 seconds I think, often, comfort’s achieved– we have to have collaborative work to achieve that, and whether that’s physical comfort or emotional comfort. And we’ll have to include the family, the carers, and people that matter most to the person with dementia and that we really must do that. It’s always a multidisciplinary role, I think. And nobody in any sort of palliative care situation, which is obviously what dementia is, can do it by themselves. The carer or the family can’t. The professional can’t. It’s got to be joined up thinking And it’s a bit of a jigsaw, really.

Skip to 1 minute and 38 seconds It’s about getting all those important pieces pulled in together to ensure that we can have the best experience not only for the patient but for those that matter to them as well. So as an Admiral Nurse, what families often tell us is they feel navigating the health and social care system is really complex for them. So we often act as an advocate for the family to really act on their behalf and almost know what’s about to happen, in some sense. And we can plan ahead and almost see around the corner what’s going to happen and enable the family to be ready for that and to be prepared for that so we are acting in less of a crisis situation.

Skip to 2 minutes and 27 seconds So we’ll link, then, with all various professionals who may need to be involved in the care of someone with dementia. Because in those later stages, it is complex. There are physical and emotional needs that the person has and it may not be one professional who can do that. But the Admiral Nurse acts to instil that resilience, the confidence, the ability, really, to communicate with professionals. Sometimes it’s about language. We, as professionals, know the language to use. And if we can enable families to understand that and understand some of the systems and processes around our health care system, they can work better with the teams who they’re working with. And we can enable them to have good relationships.

Skip to 3 minutes and 16 seconds Because we encourage families to stay well-connected with all the services that are involved with them and the person and maintain good relationships. Because that’s a better outcome for all of us. The family are also experts, particularly around that person. And it’s joining up and sharing that knowledge as the person with dementia’s illness has progressed, where they can’t necessarily contribute to the discussion around what their needs are. We have asked the meetings now be multidisciplinary, which includes day centre and carers and social work services and ourselves, as well as Mum. So there’s lots of agencies you have to think about. Well, the easiest way I think about it is about the health agencies.

Skip to 4 minutes and 3 seconds And I think they’re often quite obvious– or sometimes not as obvious– so that you’ve got your nursing, your district nurses, your Macmillan nurses. But within those services, there are other services attached, such as the benefits assessments and support Macmillan services can give. There’s legal services and various charities. You then have to think about the social care services– because very often, they go hand in hand– and what resources are there within our social care colleagues. And sometimes, there’s bespoke services within social care for dementia and end of life. And it helps to be aware of that and which one you can tap into. You have got your voluntary sector, as well. You get the care right when you’re all together.

Skip to 4 minutes and 55 seconds It has to be all together so everybody knows the same information, you’ve got continuity, which is, if you’ve got your continuity with care, you’ve got your continuity with professional involvement, as well.

Working together to achieve comfort

Our professionals and family carers share their personal experiences and views on the benefits of family and healthcare professionals working together to achieve comfort for the person living with dementia. They explain why it is important for family to be involved in care planning and decision-making; how you can be supported to be involved; and how working as a team can ensure the best care as dementia progresses.

As Bev says

“You get the care right when you are all together”

  • What do you think?
  • Do you agree with Bev?

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This video is from the free online course:

Dementia Care: Living Well as Dementia Progresses

Newcastle University