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Skip to 0 minutes and 8 seconds It’s never easy taking somebody else’s authority from them and to make decisions on their behalf. We did it as a family, so I think that helped everybody because they didn’t feel solely responsible for what was happening. And fortunately, all of us were on the same hymn sheet. That could have been difficult if we hadn’t been. But in general, we all saw the practicality of what we were doing and were pragmatic about how things are going to be. That doesn’t mean to say that emotionally it wasn’t difficult. As time goes on, things become complicated. Banks, for example. Oh, gosh. No, you can’t do anything because you haven’t got power of attorney. Medical.

Skip to 1 minute and 6 seconds They might say, oh, well it’s his decision, not yours. Well, hello? He really can’t make that decision. Somebody’s got to do it. If you’ve got the piece of paper that says you can make that decision for him, it makes it a lot easier. You may not want to do that. But you have to do it. You know that. But with that piece of paper it’s so much easier. So I would stress that. Get it done and get it done in the very early stages. It’s a lot easier. Before mum got to where she’s at now, we talked with her about making lasting power of attorneys. And thankfully, that went ahead.

Skip to 1 minute and 54 seconds To some extent that has made life easier for us because we now have the authority for want of a better word that we can make decisions if we need to without necessarily referring to her. We didn’t get a lasting power of attorney in time. So by the time that we actually needed to do that– because we had to start making decisions on my dad’s behalf– we then had to apply for it. I had to apply for the deputyship from the Office of the Public Guardian. I don’t recommend it. It was– it takes much longer. It’s also more costly. And that’s not just even at the time but even afterwards.

Skip to 2 minutes and 37 seconds It means that if you make major decisions you have to make an application back to the office of the public guardian. I got a not for resuscitation form filled out through the doctor, basically because it wasn’t like, he’s going to die. Don’t do anything about it. But it was really making a realistic decision at the end of the day if something serious did go wrong.

Skip to 3 minutes and 6 seconds Ideally when people have the capacity– perhaps earlier in their dementia– when they have the capacity to explain what they would like and how they would like their health to be taken care of, things like where they might want to die or how they might want that to happen, who they might want to have around them, what they might want at their funeral. These are important questions but often questions we don’t think about. But they are important because later in dementia the person is more likely to have lost the capacity to make those decisions themselves. I think the carer needs to feel that they’re doing the right thing by the person.

Skip to 3 minutes and 50 seconds They usually want to feel that they’ve done as much as they possibly can. So if they know the person with dementia’s views and they do what they can to try and achieve that, it’s not always possible. And that’s not the carers fault because we can’t always predict what’s going to happen. Common decisions that need to be made when someone has advanced dementia are usually around their health care and where they’re going to spend the care for the rest of their lives. In terms of their health care, it may be around the medications that they’re taking and when we stop those if it’s causing more harm enforcing them to take them.

Skip to 4 minutes and 30 seconds And in terms of their place of care, where they feel most comfortable and where they’d like to be cared for. As a GP I can be very helpful in making decisions with the family in advanced dementia. Hopefully, we will have had conversations early in the illness about what’s important to the person with dementia. And we’ll know their views and thoughts about their future care. We’ll also have identified the person they want to make those decisions in the future either through a power of attorney or more informal ways by just naming a person in their medical records that they want me to speak to.

Skip to 5 minutes and 8 seconds One form of forward health care planning, which health care professionals find very useful, is the emergency health care plan. In this we imagine an emergency scenario that might happen. And we document very clearly and specifically what actions are to be taken by the health professionals involved. This can be very useful, for example, if someone who’s not usually involved in the person’s care is then called in at the time of emergency. For example, an on-call GP or perhaps the nighttime care manager in a nursing home. This means for people who are not routinely involved clear instructions are written down as to what the family and the usual health care team want to happen under those circumstances.

Making the right decision at the right time

Watch this video to hear more from our carers and healthcare professionals about common decisions that might need to be made by, or on behalf of, someone living with dementia.

In the video, our experts talk in more detail about the benefits of different advance care plans. This includes Lasting Power of Attorney (LPA) for Health and Welfare, and Property and Financial Affairs; Do Not Attempt Cardiopulmonary Resuscitation (DNACPR); and Emergency Health Care Plans (EHCP). If these terms are unfamiliar to you, you can find out more in the course glossary.

Having early conversations about some of these decisions, talking to others, and making plans for future situations, can help you to feel confident that decisions are made in line with the needs and care preferences of the person you support.

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This video is from the free online course:

Dementia Care: Living Well as Dementia Progresses

Newcastle University