Through my work I often encounter people who say that they cannot talk to someone who has dementia. They are scared to talk to them (as I wrote about here), don’t know what to say, are unsure of how they will respond, or simply can’t see the point. Many times I’ve heard, “Well it’s not like they are going to remember what you say is it?”
I would argue, however, that these attitudes reflect far more negatively on the people expressing them, than they do on the communication skills of the person with dementia who they are seeking to avoid a conversation with. It is a very sad indictment on our own abilities if we cannot find the time, make the effort, and actually learn how to have a meaningful conversation with a person who has dementia.
It doesn’t need to be a full-on debate, a few words can provide immense insight, but how, you might ask, are you going to do that when someone’s dementia is advanced to a point where they are constantly repeating themselves, speak words that you cannot understand or make noises that don’t even represent words? In the last few years of my dad’s life, his noises became more and more dominant in his communication armoury until they were the only sound that he would make, unless of course we put a song on that he loved, then whole words that were perfectly timed with the music would flow from his lips.
So much about communication with someone who has dementia, especially in the more advanced stages, is about the approach that you take. You can assess a situation and decide that you can’t work it out so you won’t bother. Or you can adapt (try singing your conversation rather than speaking it), learn to listen carefully, and choose topics that might spark your loved one’s interest or engage in activities with them that could naturally promote conversation. Often once a song had reminded dad of his vocabulary, the noises he previously communicated with would be temporally shelved in favour of clearly articulated words that, due to their rarity, brought such joy and happiness to everyone around dad, and seemingly to him too.
Those moments were the bright spots in what were often long days of effectively a monologue from us, but it wasn’t always like that. Earlier in dad’s dementia he went through a stage of constant repetition, and I have met many other people with dementia who similarly feel the need to say the same things over and over. Thinking about this logically, it’s not entirely unexpected. If someone cannot remember what they have just said but still have the thought in their head, they are likely to repeat it. Equally, if they feel that they are not being listened to or acknowledged, they may seek to constantly reaffirm what they want you to hear. It can also be a symptom of boredom, a lack of engagement in their surroundings, or a need to break out from their environment to experience new sensations.
Frustrating though constant repetition might be, the worst thing you can do is try to fight against it. Getting angry, being dismissive or rude won’t help anyone, and it’s unlikely to stop the repetition that you are finding so irritating. Learning to go along with it, rather than seeking to correct it, will be a lot less stressful in the long run, and will also avoid that terrible guilt every carer has felt when their exasperation has led them to say something that they never meant, but that may potentially have hurt the person that they love and care for.
Dealing with misunderstanding, as a result of muddled words or words that you cannot fathom, can be equally challenging and lead to very similar emotional fallout. For a long time my dad kept saying something that sounded remarkably like ‘Obama’. Bizarrely he was doing this long before Barack Obama became US president, leading me to wonder if dad actually had a sixth sense about the result of the 2008 American election!
I never did work out what he was trying to tell us, and sometimes guessing can lead you down a path that is even more baffling than when you originally heard your loved one say the word(s) that you cannot understand. I eventually came to the conclusion that dementia can produce a language all of its own, related perhaps to the world that the person with dementia is living in, or possibly entirely unconnected – like an involuntary reaction that has no foundation or meaning and cannot be controlled.
So how do you cope with all the vagaries that come from communicating with someone who is in the more advanced stages of their dementia? My advice would be to apply the 3 golden rules:
1) Don’t ask questions
2) Don’t contradict the person
3) Learn to love their repetition
Of course like all rules you will break them, we did on countless occasions, but never intentionally – it isn’t only people with dementia who can have an involuntary reaction to a situation. We tried to make up for our shortcomings by allowing time, showing patience, keeping our expectations in check and our minds open to what we were hearing, remembering that if something left us bemused, frustrated or hurt, that what the mouth may say wasn’t necessarily a reflection of how the heart was feeling.
Until next time…