‘Things I wish I’d known about dementia’

‘Things I wish I’d known about dementia’

It’s not always easy to know how to care for a person with dementia. Here is an insight from a carer’s perspective. As the saying goes, if I knew then what I know now…

Moods can change very quickly
Living with a person with dementia can be an emotional rollercoaster. One minute, the person can be happy, the next they might be tearful, depressed or angry. It’s best not to take it personally if the person suddenly becomes angry. It’s not their fault; so don’t respond to confrontational remarks. Let the person speak freely without appearing to judge or contradict, which will just inflame the situation.

Repeating yourself becomes standard
Answering the same questions is a normal part of caring for someone with dementia, so don’t point out that the person just asked you the same thing five minutes ago. This will only make them feel inadequate or frustrated.

They need reassurance
Imagine waking up in the morning and not knowing whether you’re retired, need to get up for work or get ready for an appointment. Reassure the person you won’t let them miss an important date or appointment, so that they know they can count on you.

Don’t mention age
A person with dementia can go on a journey back in time and often think they are much younger. Mirrors can be distressing for those with dementia, as they don’t always recognise the older ‘stranger’ staring back at them.

Use distraction techniques
If a conversation is becoming strained and the person is getting agitated, try changing the subject instead of allowing things to get more heated.

As superficial as it may sound, something as simple as offering the person a cup of tea or asking what they’d like to watch on TV may be a good way to change their mood. These are simple distractions but they usually work.

Don’t mention bereavements
Reminding a person with dementia that their partner has died when they talk about them as if they are still here is not a good idea in my view. It will only lead them to grieve all over again. You may want to consider whether it’s appropriate to tell a white lie and say that the person is at work, before changing the subject. This may sound misleading and even cruel but my personal experience of answering this question many times has made me conclude that the occasional white lie in order to be kind may be the best solution. When my mother first asked where my late father was, I used to gently remind her that he had passed away but she would grieve all over again. She would also be deeply distressed that she hadn’t remembered something as significant as losing her husband of 55 years. If you don’t feel comfortable telling a white lie, you could answer a question with a question, such as: ‘Where do you think he could be?’ and then change the subject.

Routine is important
A person with dementia can become confused if you change their normal routine. While this may be inevitable on some occasions, only do it when it’s absolutely necessary. Planning holidays in new locations may sound wonderful, but can be stressful for the person when they wake up not knowing where they are. A consistent routine is much more settling, along with a familiar environment. I learned this the hard way when I took my mum to a luxurious health spa – after seeing other guests in robes she thought she was in a hospital and hated the whole experience.

Night and day become blurred
During the summer, when the mornings get lighter earlier, it’s not unusual for the person with dementia to get very confused and not know what time of day it is. Time also loses significance. My mother used to call me at 5am, thinking it was 5pm, and wondering why I hadn’t visited as planned.

Local support is crucial
I didn’t live locally to my mother so I had no choice but to accept local help and support. Neighbours looked out for her – even shopkeepers went above and beyond the call of duty to make sure she was OK. Don’t try and do it all by yourself. Sometimes help can come from unexpected sources. Embrace it, because you’ll need it.

Be in a good place when visiting a person with dementia
When you visit a person with dementia, you have no idea whether they will be happy, sad, confused or angry. You need to be prepared for anything and this of course can be very draining. If you are tired, unwell or feeling stressed yourself, it’s not the right time to visit that person. Postpone a visit until you’re in a better frame of mind unless it’s urgent.

Accept the inevitable
There will come a time when you will need to make decisions on behalf of the person with dementia. If the person is your parent, it’s very hard to accept that your roles are now reversed, especially if you’ve relied on them a lot in the past. Accept that you have to be strong and do what’s in their best interests when they can no longer judge what is best for them. Don’t leave it too long to set up a Lasting Power of Attorney.