When supporting my mother when caring for her husband Bill with dementia, there were often discussions about the extent to which you should correct a person who is in a different reality, and when you should just go along with them in the here and now. When Bill talked to my mother from the care home, he was frequently travelling in his mind, at an airport or a train station and asking for help with how to get back to mum. The message was very clear that he was feeling lost and at times quite panicky about not being able to find his way home. I suggested to mum that rather than always bring him back into reality, that she just reassures him that he doesn’t need to worry, that she is close by, and help will soon be on its way. This usually eased his anxiety. However, there were times when she found that he needed to be grounded in reality and she would explain that he was staying in a care home and why they were separated.
This approach to dementia care has been described as ‘fancy footwork’ in that you constantly need to read the mood of the person and know what might help them best in that moment. Sometimes families can get caught in the trap of correcting the person’s mistakes or loss of memory. When a story is recounted about a shared event in their life like a wedding, and the person living with dementia has a version of the story which is not quite accurate, the temptation is put the person right and tell them the ‘correct’ details. However, this will often add to the person’s sense of feeling stupid or create a conflict that isn’t always helpful. Does it matter if the dress someone wore was a different colour or the name or the date are not correct? Many relatives become very adept at taking a deep breath and just going with the flow.
However, it becomes much more emotionally charged for a spouse or son or a daughter when a much more fundamental ‘fact’ gets lost such as not recognising who they are or even being rude or dismissive to their relative as if they are a stranger or an enemy. It takes huge resilience to not feel the hurt of this, even when you understand that it is the consequence of the disease process not the unkindness of the person. Do you then try and explain who you are? “It’s George, your husband”, or “I’m Sally, your daughter” or do you just go along with the person for a less complicated life?
There are no easy answers, and families need support to navigate these difficult changes, many of which exacerbate the sense of loss. The key to communication is constantly reflecting on what the feeling is behind the words, and rather than correcting factual inaccuracies, respond in a way that conveys that you hear the feeling being expressed, and you are there for the person. This is surely true for all communication, not just with those living with a dementia?