How do you deal with someone who has dementia?

Almost three hundred thousand Dutch people have dementia. Scientists expect that number will increase sharply in the coming years as a result of the aging population, and there is still no effective medicine in sight. There is no other option: it is now mainly important to offer people with dementia quality of life. That starts with knowledge about the disease, states Alzheimer Nederland, which again launched the Samendementievriend.nl campaign on TV in June.

Read carefully, says Jurgen Claassen, a clinical geriatrician and researcher at the memory outpatient clinic of the Alzheimer Center Nijmegen of Radboudumc. ‘Apathy and the inability to do anything is often one of the first symptoms, even before memory loss occurs’, he says. It often leads to misunderstandings in relationships: ‘Partners of people with dementia sometimes explain this as a lack of interest, which leads to accusations and arguments. Realize that the patient does not do it on purpose, advises Claassen. Not the person, but the disease is the culprit. ‘So don’t expect the other person to come up with a proposal to go out, for example. What does work is a directive approach: come on, let’s go for a walk.’

Cup of coffee

If after the apathy the memory loss starts to occur inexorably, this creates new difficult situations. “A lot of people think it’s important to ask questions like, ‘Remember where we were yesterday?’ They think that practice helps. But it doesn’t work that way: people with dementia can often still retrieve memories from the distant past, but the storage function of new memories is broken. And you can’t train what’s broken. Those questions only make someone insecure: it gives people with dementia the feeling that they are failing.’

In addition, avoid open-ended questions with people who already have advanced dementia, he says. Many informal carers hear someone with dementia answer ‘yes’ to the question: do you want coffee or tea? That choice is too complicated. Claassen: ‘If things go wrong, it is better to simplify the question: do you want a cup of coffee?’ And, he says: do not announce certain events or appointments too early, because the orientation in time is disturbed in dementia. So don’t say: we’re going to the doctor next week. ‘There is a good chance that the partner will keep asking: shouldn’t we go? We have to go to the doctor, right? It is better to announce the appointment on the day itself, shortly in advance. That prevents a lot of unrest.’

No wells/nothings

Dealing with someone with dementia requires adaptability and constant flexibility, as Anne-Margriet Pot, geriatric psychologist and professor of supervision of long-term care at Erasmus School of Health Policy & Management (ESHPM), also knows. Last year she published the book ‘Caring for a carer: a dozen daily dilemmas’. Pot’s parents died a few months apart in 2017. Her mother already had dementia when her father had a serious stroke. They both had to move to another nursing home: it was impossible to stay together.

Pot: ‘That was the first dilemma, but many more followed. My mother used to say: I don’t see anyone anymore, even though I knew that my sister came to visit three times a week and had been there the previous day.’
Starting a yes/no discussion is pointless in such a situation, even if it feels unfair, she says. ‘Dealing with someone with dementia requires adaptability. Of course: as a carer you would rather hear that you are doing well. But: remember that it is the disease that speaks. Sometimes distraction works well to take the sting out of the conversation. You can also choose to properly name the feeling by saying: I understand that you feel abandoned. Someone with dementia can feel very alone: ​​it’s not easy if you get lost.’

Both Claassen and Pot point out that informal carers should also monitor their own health and well-being. Claassen: ‘A bad night’s sleep in particular can be a breaking point, but being alert 24 hours a day also takes a lot of energy. Make sure you stay on your feet: take regular rest for a day. A dementia case manager can usually estimate when more help is needed. ‘
Pot: ‘Many carers find the advice to take good care of yourself difficult. Now I have to do that too, they say. But taking some time off and taking care of yourself pays off. It’s no use to anyone if you collapse.’