I’ve been asked by a journalist a rather general question about how to “care for” a loved one with dementia.  I could see them starting to lose interest because they wanted the five top tips, or the quick answer.  There just isn’t one.  It’s too complex.

Anyone reading this who has the experience of caring knows that it’s a long journey and everything changes all along the way. 

At the early stages the person with dementia has subtle signs and symptoms that only you can see.  If they are aware of it, they often are so afraid that they try to conceal it and you help them to do that because you love them and want them to be comfortable.  You compensate in many ways, taking over a life tasks that they used to do.  As you do that, they may argue with you and become angry with you for discovering mistakes they’ve made, as if you are the problem. 

When the things that are going wrong become more obvious you may be in a dilemma about when to get in touch with a doctor.  Most carers are dealing with dementia for years before they do contact health services. Then there will be heart ache as you accompany the one you love to appointments and clinics where they are put through tests that seem designed to discover what they cannot do, rather than what they can.  It forces them to face their weaknesses, rather than celebrate their strengths and you are the one there to pick up the pieces.  As the behaviour changes people sometimes tell me it is like living with a stranger.  The grief for what you have lost can’t be processed because every minute feels as if it is taken up with endless crises and situations caused by the dementia. 

In truth, you just care for a loved one with dementia as you always have done.  You care for the person.  But the thing you need hints for is how to manage “the dementia.” 

So, no matter who the loved one is, or even if you don’t love them, here are the five hints the journalist was looking for about dealing with “the dementia”.

Five hints for dealing with “the dementia”

1. Don’t argue or correct. If the person is getting things wrong, you only annoy them by pointing it out and it usually doesn’t matter.  It’s “the dementia” talking, not the one you love.

2. Keep life simple.  If you can have a routine and stick to it things are less likely to be stressful and that’s a good idea because stress makes “the dementia” worse.

3. Tell someone. People used to be embarrassed and confused about “the dementia” but now we all know a lot more and lots of people want to help.  If you don’t talk to anyone you end up having to explain away things away and that is exhausting.  You are already busy and tired.  Why give yourself another pointless task?

4. Reach out for help. There are organisations that exist purely to support people in your position. They know about benefits you can apply for, and practical solutions to everyday problems.  You will meet people going along the same path, in the same town, who can tell you where the potholes are that will trip you up if you are not warned. Look here for information about how to find them.

5. Get as much information as you can. The more you know, the better it is.  Maybe one day you’ll need help in the house or a care home.  Find out years in advance what is involved, so that you can forget about it in the meantime and when it suddenly happens in a crisis you’ll be well-informed.  Make sure you put the legal and financial things that matter in place, and don’t miss the window of opportunity when the person can grant you legal powers in advance, for use later when you really need them.

So talking to the journalist I could do not much more than recommend some good books, including an audiobook, and offer them some general advice.  And I ask them to think about the dementia as a separate problem to be dealt with.  To care for a loved one, you just love them, and to do that, you need to take care of yourself.