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Skip to 0 minutes and 7 seconds Recognising pain in someone with advanced dementia can be very difficult. I tend to avoid using the term pain. I say, I’m looking for distress. Because they can’t speak or communicate how they’re feeling and their needs, you’re often looking for signs of distress or agitation. So it may be around looking for changes in their behaviour, it may be looking at non-verbal signs, talking to their families and the people who are caring for them on a daily basis and seeing if they’ve noticed any changes in behaviour. My experience is that a lot of families think that they will– their loved one will develop a lot of pain, for example, at the end of life.

Skip to 0 minutes and 50 seconds And what you’re going to do to control that pain, how will– if I take morphine now, how will my pain be controlled in the future? So it’s important to have these conversations and one, to be able to say that there’s a lot of people who die that never ever have any pain. Explain about the medication that we would use for secretions on somebody’s chest, that yes, you will notice some breathing changes. You may perhaps hear that rattling sound in somebody’s chest. You can well see that somebody’s breathing is very laboured and that they’re struggling to breathe.

Skip to 1 minute and 26 seconds But these are all things that we can do something about as that person begins to die and these are all– we can give medications, we can alter somebody’s position in the bed to provide that added extra comfort at that time. Planning ahead can help GPs manage distress and pain in someone with advanced dementia by what we call using anticipatory medications. So we know that common things are common– for example, older people will get pain from having things like arthritis. They may also get constipated. So we can write up certain common medications like paracetamol or laxatives in their medical records so that staff can give them as they think they need them without having to call for the GP.

Skip to 2 minutes and 15 seconds This means that the person with dementia is not kept waiting for medications for long periods of time, and thus in unnecessary distress. If they’re not getting their medicines, very often a very common worry is about pain and other symptoms control. And I think often you come across that with patients themselves when they have the capacity to think ahead and anticipate that. But families as well, their family very commonly and very understandably are concerned, well actually, what if my mum or dad is distressed? What are we going to do? And you have to plan ahead and talk with them about actually giving medicines a different way, like a syringe driver or an injection.

Skip to 2 minutes and 59 seconds So as you see these symptoms happening, I also see them as an opportunity to have those conversations. You might have had an earlier conversations about planning for this moment, but you can use that moment to plan ahead for the next short while that’s coming ahead. We know that patients, when they’re dying, will tend to have symptoms that we need to be prepared for. So it’s important that we have those medications in the house, and they’re usually some analgesia, an antiemetic, and anti-sickness drug, a medication for chest secretions which can help dry up those secretions and promote comfort for the patient. And something– a sedative.

Skip to 3 minutes and 47 seconds Sedative medications such as midazolam in case that patient became very distressed towards the end of their life. It’s hugely important that we have quick access to these medications at end-of-life. These are not the medications that we want to be driving around for at 3 o’clock in the morning trying to get a hold of. And likewise, if somebody is in a care home or a ward, it’s important that these medications are within the drug cupboard of the environment where the patient is. Again, if we don’t plan for this, we’ll fail in the patient’s care. There’s often a lot of times with frail elderly patients, patients with dementia where admittedly these drugs may never be required in end-of-life.

Skip to 4 minutes and 33 seconds And in my experience, there’s been a lot of times when I’ve met with GPs who have said, why am I prescribing all these medications? This patient is clearly dying and very, very settled. Why do you want me to write a script with four types of subcutaneous medication?

Skip to 4 minutes and 54 seconds But we never know what you see at 10:00 at night might be very, very different to what you see at 3 o’clock in the morning. So good practise– and if we’re following the end-of-life strategy, et cetera, it’s better that these medications are put in place so we can get them rapidly, and more importantly, administer them quickly to the patient.

Managing medication

Our healthcare professionals explain how distress and pain can be controlled through having the right medication in place. This includes medication for managing current conditions and also to manage pain as dementia progresses and symptoms change. Preparing for changes and anticipatory medications are explained by our experts who talk about different types of medication and how these might be given as dementia progresses towards end of life.

If there are terms that you are unfamiliar with do have a look in the course glossary.

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This video is from the free online course:

Dementia Care: Living Well as Dementia Progresses

Newcastle University