Members of our family have had to make this decision many times. The descriptions below are based on one or more of these events, though the person is described simply as “our elder.”
Signs of dementia: There can be quite a few. Things that we noticed were papers and bills that “got lost,” not remembering how to get to her destination when driving and forgetting that entire visits took place. There could be many other signs.
Testing: Doctors do put a lot of store by what the family says, but they don’t make a diagnosis based on hearsay. They have to test the patient to make sure it’s really happening. There are short tests, and that was done for the original diagnosis. It involved short term memory, memory of current events and a request to copy a simple picture drawn by the doctor.
The second round of testing took a lot longer and had quite a few more people doing the testing. Some were requests to repeat a list of words, being told to remember them and then tell them again after a couple more questions. Others were current and past major events and so forth.
I was there both times. I knew what the diagnosis was going to be before the doctor said it both times. The question was, what do we do next?
What happened when she was told? The doctor told our elder that she had dementia. We told her several times in the following weeks as well. It went over like a lead balloon. She was bitter about it. She made nasty comments about it and about anyone who told her the diagnosis. It was, all told, horrible.
What happened when she wasn’t told? I spoke to her new doctors at length about what to say to our elder with the second diagnosis. I explained about her reaction the first time and asked for advice. It was agreed that we wouldn’t mention it. As she had been told once, it wasn’t considered a medical necessity to repeat it.
Our elder is aware that she missed one of the questions. She reminds me of it regularly. She isn’t aware she missed most of them, and unless we have to, we aren’t going to tell her that.
It’s your decision if…: There is a reason we have say so in medical situations with our elder. Before she became incompetent she made a living trust naming durable and medical powers of attorney. After the diagnosis that gave us the ability to discuss what was best for the patient. Various laws, including those for patient privacy, prevent doctors from discussing medical issues without these documents.
If I had to do it over again I probably wouldn’t mention the diagnosis. It caused all of us more pain without any benefit to the patient. However, that’s not going to be the right thing all of the time. I suggest you do what I did the second time…talk to the doctor about how much (if anything) to tell the patient. It could help you avoid a lot of pain.