One of our SERMO physicians practicing in the UK started a conversation about how physicians should be talking to patients with dementia.
“Talk to me directly, the person with dementia. I am the person with the disease, and though my loved ones will also be affected, I am the person who needs to know first.”
If we diagnose someone with pneumonia – we tell them.
If we diagnose someone with cancer – we have the difficult conversation as sensitively as we can but ultimately – we tell them.
We are good at explaining that when the heart “fails” the lungs may fill with fluid but somehow “brain failure” and its resulting symptoms and signs make many of us stutter in front of our patients.
I personally tell my patients quite clearly that there are elements of their presentation that raise concern of a dementia process. I try to explain that the brain is an organ like any other – its specific functions include memory and behaviour, no different to the heart and lungs having their specific functions. Functions which deteriorate with time.
When the question of memory comes up, the family sitting in the background often ask to speak privately outside or mouth the words “very forgetful” as if to speak about this openly is a taboo. There is also the attitude that if the dementia process has started then “what is the point?” in distressing the patient with this information. Even if a patient had moderate – severe dementia I am not in the business of treating them as though they are empty vessels. It is my feeling that they deserve the same explanation and reassurance as those who are not cognitively impaired – I don’t think any of us can be sure that none of what they hear is retained or processed. Furthermore I think the words ‘dementia’ and ‘Alzheimers’s’ can and should be used verbatim. I am not sure why we beat around the bush so much in these situations.
The Alzheimer’s association supports diagnostic “truth-telling” with evidence that this helps with future planning – particularly in a world of rapid medical advancement in this field.
Do you practice diagnosis truth-telling with your dementia patients?