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How to plan for end of life care

It may seem like a depressing subject, but if you spend a little time thinking about end of life care now, while it’s still a long way off, it can save a lot of heartache and confusion. Find out what you need to know

Why it’s good to think ahead

You might not want to talk about death or dying while you’re loved one is still fit and well and enjoying life to the full. But being given the chance to let other people know their final wishes can give someone with dementia a sense of freedom and control, as well as providing peace of mind. Many people with dementia also worry about becoming a burden to their family, so knowing that things are taken care of can be a weight off their mind.

Getting started

When the end comes most people have quite simple requests; they want to die with dignity, without pain, in familiar surroundings and with loved ones around them. So there’s no harm in asking the person you’re caring for if this is what they would envisage for themselves too.

Getting clearer

Once you’ve got the conversation going, you can ask more probing questions. Areas to discuss could include, for example, whether they’d like to be at home (some people have very strong feelings about this) or wouldn’t mind moving to a care home, providing it’s comfortable, pleasant and the staff are compassionate. They might also have strong preferences about who they want to be with them – and who they don’t want to be there! Far from being depressing, this kind of discussion can actually be quite a relief for someone with dementia. So listen carefully and assure them that you will respect their wishes.

Medical treatment

There’s a strong chance your loved one won’t actually die from dementia, but from a related condition such as a stroke, heart attack, or pneumonia. For this reason their treatment needs can often become quite complex. Areas to discuss include whether they’d like to consider having a DNAR (a Do Not Attempt Resuscitation Order) or make an advanced decision or advanced statement about their future care. They might also want to think about appointing an attorney to make decisions relating to their health and welfare.

Spiritual requests

Religious or spiritual beliefs can provide great comfort to someone who is nearing the end of their life. Would they like a religious leader to visit or say special prayers? Again, this can be very personal, as some people find a visit from the clergy frightening when they’re ill, whilst others welcome it whole-heartedly.

Good to know

Government guidelines on end of life care make it very clear that comfort and quality of life should be the priority, regardless of any medical complexity, and that all care – whether in a hospital, care home or at home – should be person centred. So reassure your loved one that their views and feelings will always be heard and will take precedent wherever possible.

Tip: Use kind, comforting phrases because this can, understandably, be an upsetting subject to broach. For example, try; ‘You can always revisit things, but because you’ve done the first step it will be a bit easier.’ Or ‘You don’t need to be frightened, it’s much easier to do this earlier, now we can focus on enjoying life.’