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Skip to 0 minutes and 9 seconds Well, his physical needs have changed a lot. He really is totally dependent on me to encourage him to do things that he has to do, if he can do them. Understanding that what I’ve asked him to do, just generally getting the message across sometimes is really hard because he has deteriorated. More so in the last couple of months, he’s really gone downhill a lot, but we try and keep a stiff upper lip or a normality, if that’s the right word. But we still go to places. We go to church regularly, and he– that’s the one thing he does remember strangely enough. I was surprised by the inhibition of things and just normally being a very proud lady– quite smart.

Skip to 1 minute and 19 seconds But now if you say, well, you’ve got a mark on your dress you need to change this, or you need tights on to go out. I’m not bothered– doesn’t bother me, I don’t need to, I’m not doing that. And that’s sometimes hard to challenge because you don’t want to go against her wishes, but also you don’t want her to not look how she would have normally looked. And it’s part of that care and that if she understood how she was actually looking, she wouldn’t really feel happy with that.

Skip to 1 minute and 59 seconds It’s important to know that dementia will progress, and it is difficult to watch, especially for the families and just to know that us carers are here to hand out as much support as we can possible to make it easier for yourselves. One of the questions I often get asked by people with dementia and their relatives, is how quickly to expect things to change. And to be honest, that’s a very difficult and important question but one that’s very difficult to answer. And so what I often suggest is that they consider looking back over the previous year to see how much things have changed over the year.

Skip to 2 minutes and 40 seconds And that gives some idea as to how quickly things are changing at this time in the illness. As dementia progresses, a person’s physical needs can change considerably. They obviously lose the ability to do simple tasks and become more reliant on their families and carers around them. Emotionally as well– they get more frustrated because they lose the ability to find simple words and also may become very depressed. Spiritually, I think it’s a difficult one. It’s important, therefore, to talk to someone at the beginning of their illness, when they’re able to communicate, so you can get a good picture of what’s important to them– both emotionally and psychologically and spiritually.

Skip to 3 minutes and 26 seconds So that then when they’re more– when they’re more advanced in the illness and less able to communicate, you have an understanding of what’s important to them. In the later stages of the illness, people with dementia often find it increasingly difficult to explain how they’re feeling and to make other people aware of what help and support they might need. And increasingly, their loved ones or other people who are caring for them need to begin to anticipate what the person might need and what help they might require.

Skip to 4 minutes and 1 second For example, if someone with quite severe dementia became very unsettled and distressed, the people looking after them would need to try and anticipate based on their knowledge of this person as an individual what the cause for that might be and what they could do to help. It might be as simple as that the person needs to use the toilet but isn’t able to– doesn’t know where the toilet is. It might be because the person’s hungry, and he’s feeling uncomfortable but isn’t able to put into words that they’re feeling hungry.

Skip to 4 minutes and 34 seconds It might be because the person’s developed pain but isn’t able to tell anybody that they’re experiencing pain, or sometimes it might be as– it might be that the person just needs some care, attention, and comfort. The person may get more withdrawn, less communicative. There may be problems with eating and drinking. There may be swallow problems. Mobility may reduce. carers are likely to notice quite a significant decline in someone’s function. We might see skin changes. People may get more infections. And they may actually get less time between those infections, or they may not necessarily respond very well to those infections or the treatment.

Skip to 5 minutes and 19 seconds And hence that might result in repeated contact with doctors or hospital admission to try to get some kind of resolve to this.

Recognising how dementia progresses

The person you support is likely to experience physical and mental (including behavioural and emotional) changes as dementia progresses. This means their needs will change over time.

In this video family carers and healthcare professionals share their experiences and explain what might happen to the person you support.

Recognising common changes as the condition progresses can help you to understand how their comfort and care needs may change.

  • Did any of the experiences shared in the video feel familiar to you?

If you feel you would like to share your own experiences you can do this at any time by adding you own comment or replying to others. You do not have to – it is completely up to you.

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This video is from the free online course:

Dementia Care: Living Well as Dementia Progresses

Newcastle University