Skip to 0 minutes and 7 secondsAnd I think it's important. People don't want to talk about end of life, but I think it's important to be prepared for it. And being prepared for end of life makes a difference to that end of life, as difficult as that may be. And personally, I would rather talk about it sooner than later. I know how through an illness, things can change. But it's important that the people around you know what you want. But it's probably the most important thing because it's the thing that you will remember most. That's the last thing you're going to remember about your loved one. And you want it to be right. You want it to be good.

Skip to 0 minutes and 57 secondsIt makes things a lot easier for family members and knowing what their loved one would have wanted rather than trying to guess or work it out between the family. It stops a lot of arguments or conflicts between family. I think they'll also be able to be more informed and have an idea of what to expect as the disease progresses. Progressively, you take over more and more situations. Importantly, I think one of the things is getting power of attorney, for both health and finance. That I would stress to anybody. Get it done, and get it done early in the very early stages.

Skip to 1 minute and 40 secondsIt's often very difficult to give somebody a diagnosis of a dementia, and then in the next breath to start guiding them and advising them to start planning for the end of their life. And we appreciate that. But we also know that it is hugely important to start those conversations in a timely manner, when perhaps end of life isn't really happening and we have enough time to have perhaps less emotive conversations because it's maybe somewhat in the distance. So we need to draw on perhaps past experiences. People may find something that's in the press or a storyline, in a TV drama, for example, that can often be used as a catalyst for conversation. What distressed you about that story?

Skip to 2 minutes and 36 secondsWhat have you thought about that? What are your views moving forward? What would you like for your end of life care? Planning ahead in dementia is really important because we know that as the illness advances, people will lose the ability to speak and communicate their wishes, and they'll find it difficult to make decisions. So we have to do that on their behalf. As a GP, I'm in a very good position to have those early conversations with people with dementia and their families. Initially, it may seem distressing and frightening. But by having those conversations early on and explaining why we're having them, usually I find that people are quite comfortable.

Skip to 3 minutes and 16 secondsWhat I do encourage is that we try and look at finding out what's important to them in terms of their future care, what they would want to happen, and communicating that both to their family members and to me as their GP. If possible, I will try and get them to allow me to write it down in their records so that other people and other care professionals can see those wishes. So getting that form through the doctor, you've discussed it with them, you've made this decision with each other. And you've done it when you've actually got some sort of sense of mind at the time. You're not making a rash decision. You've thought about it. You've discussed it.

Skip to 4 minutes and 6 secondsAnd I think that makes it a lot easier as well. I think planning ahead is essential. I think if you don't plan ahead, then you're far more likely to have a crisis. I know that we can't avoid crises, but proactive work and then planning is a far better model than crisis management. I think with people with dementia, again, it's about understanding where the person is and what were their previous wishes, preferences. Has this been captured anywhere? If the person is still able to indicate to you some of their needs, then that's got to be taken into account and not to assume that that person can't contribute to the conversation.

Skip to 4 minutes and 51 secondsIn my experience, when patients and families have had an opportunity to think ahead about what they would like and feel empowered to say what they would like in their care and where they would like that care to be delivered, the end of life process, and thereby, the grieving and bereavement processes are often very much more smoother. When things happen towards the end of life in a chaotic, unplanned way, there is a lot more distress. So I think if we can plan as much in advance as we can, then it leaves that very precious end of life time, it leaves that free for people to be with the person.

Planning ahead

We make plans every day. Some plans are day to day and routine, whereas others have a much bigger impact on our lives. Sometimes we need to make plans more formal by having them written down. This enables us to share our wishes and preferences.

As dementia progresses, it becomes important to plan in advance for everyday as well as bigger decisions. This might be decisions we often take for granted, for example our choices around food and drink, or bigger issues such as finances. Although some plans may vary in different countries, there are common plans which we can make when the person with dementia is no longer able to make decisions themselves. We will go on to explore these plans further in Week 2.

“Being prepared for end of life makes a difference to that end of life” (John)

Watch the video to find out more about the experiences of carers and healthcare professionals and to hear their views on the benefits of planning ahead for future changes as dementia progresses. They explain how you might want to do this and who can help.

Which points in the video do you identify with most?

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This video is from the free online course:

Dementia Care: Living Well as Dementia Progresses

Newcastle University