Caring for a person with dementia can be frustrating, exhausting and – sometimes – downright baffling. However, conflicts, arguments and distress can often be avoided simply by choosing your words carefully and knowing when to distract and deflect from subjects that can cause distress. Here are six things you should avoid saying to a person with dementia…
‘I just told you that’
It’s common for a person with dementia to repeatedly ask the same question – often in a short space of time. Frustrating as this is, it’s not their fault. Pointing out the fact you already answered them five minutes ago will only result in the person feeling insecure and inadequate, or even angry and frustrated. Stay calm and answer the question again, in the same patient manner as if it was the first time you’ve said it.
‘Do you remember when…?’
The person may not remember that time you went on holiday, or the lovely family meal last weekend. Don’t make them feel worse by asking them about it. I sadly took my late mother to her brother’s funeral in the mid-stages of her dementia. By the time she returned home, she’d forgotten the occasion altogether. She even asked where he was and when I pointed out we’d just attended his funeral, she naturally became distressed.
‘You’re not keeping on top of things’
Even if it’s obvious the person isn’t functioning well while they’re in the early to mid stages of dementia, they may not understand or accept the situation. My late mother lost the ability to prepare healthy meals, began living on a diet of tea and biscuits, neglected the housework and even let her personal hygiene slip. Yet she genuinely believed she was coping just fine. Pointing it out may just lead to arguments. Instead, make subtle changes or help behind the scenes, without turning it into a big deal.
‘No, that’s not correct’
A person with dementia has to work harder to process information and verbalise what they want to say. If you’re constantly correcting them when they misremember details, it’s likely to frustrate them and undermine their confidence. What does it really matter if they get a date wrong or interpret a past event incorrectly? Let it slide, go wth the flow and everyone will be happier.
‘Let’s get you undressed’
Even when help is needed with personal hygiene, no one would take kindly to having their clothes stripped off without their consent. In fact, it may well leave them feeling violated, even if you’re only trying to help. ‘Make sure the person feels comfortable,’ says Nicki Bones, Operations Director for SweetTree Home Care Services. ‘Cover the person up as much as possible. Let the person do as much as they can for themselves, rather than taking over. It should be a matter of negotiation and choice. Listen to what they truly want.’ My mother could manage to wash herself in the early stages, so I’d simply assist with fastening buttons. Support is key – but make sure it’s on their terms.
‘Joan died years ago’.
A person with dementia may get confused about who is dead or alive. When my mother first asked why my late father hadn’t returned home from work, I pointed out he’d died years before. This was a mistake, as I had to watch her grieve all over again. If the person asks for a deceased loved one, the mention of death can be distressing. Instead, perhaps comment on how heavy the traffic is, to allude to the fact they might be held up. Often it’s a momentary query – a change of subject usually works. This may sound superficial but if you can distract them by saying: ‘They are usually at work at this time’ or pointing out that the traffic is heavy and indicating they may have been delayed is usually very effective. In my view, you can justify a white lie if it’s in the best interests of the person and stops them from getting upset.
It is not always, correct to not tell the truth because the questions afterwards eg when my mil asked where her dead husband was? I said at work so she then replayed what time is be home, I must get his dinner ready, then can I ring him & so on & on
When dad asks me where mum is (passed away September last year) I try to talk about something else or agree with what he says kind of or ask him back….if he asks: “where is mum?/do you know where mum is?” I can say “yes, I was just thinking the same thing- wonder what she is up to” or “I was just about to ask you the same thing”…or ask him “where do you think she is dad?” (with a soft voice)-it gives him some time to think for himself and sometimes it works and he re’members and then he says “what a lovely funeral that was” “I miss her so much, and I sometimes feel she is still with us” and I agree….they were married for more than 45yrs
It sounds like you are handling the situation very well. Replying with a question like this is a good idea. I would try to avoid telling a white lie to my mum. If she asked for my dad and said he hadn’t come home from work yet, I would say: ‘Look at the traffic outside’ and point to the window, and she would nod and say ‘oh yes’, and then I could change the subject.
I think it does depend on what stage the person is at in their dementia journey but where possible I would do everything in my power to avoid causing distress to mum. Yes, it can backfire – there is an element of risk but on the other hand, if the person’s condition has developed and they are less likely to remember they asked you a question before, then it could well be just a moment they are having and you can avoid causing distress by changing the subject or telling them something else.
We, my sister and I agreed with dad, entered into his world. He regularly saw his parents, his mother died sixty years ago. He talked with them every day, it comforted him. Once he went through the terror of his mother dying of cancer. There were times I cried for the pain he was going through. He called for his mammy in a child’s voice, even now I am in tears remembering.
Stay with it, support the world they inhabit so long as the person is safe