Reply to Withholding Alzheimer’s Diagnosis from the Patient

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[quote=Anonymous]With this disease you have to meet the person where they are and not who they used to be. And a big part of that is managing access to information in a way that is caring.

This is going to be a marathon, not a sprint. Telling the diagnosis is not a single moment in time. We are talking about someone with memory loss and a progressive disease. They are not going to remember things. Are you really going to sit them down every day or multiple times a day and tell them they have the disease they fear the most? Agitation, anger, anxiety are all common features of the disease and something caretakers will have to manage. The best skill for this is through diffusion techniques and lots of love/compassion.

That being said, it's a very personal disease and it is different for everyone. I have known people who found comfort in being told in a simple way when they felt frustrated because they could not remember or do something that they were getting forgetful. Using terms like "getting forgetful" and "your memory isn't as good as it was when you were young" get at the idea in a way that is accessible to them. They are going to forget what Alzheimer's is so you might have to talk in simple terms.

Right now, your FIL should be supported. If he feels it it would cause harm rather than comfort to her, then I would respect that. The very fact that your MIL feels that she is normal may be reason enough to withhold the information. She's going to feel like everyone is trying to convince her that something is wrong with her and she is going to be upset by that. There are MANY Alzheimer's patients in the late stages who can't do anything for themselves that insist they have nothing wrong with them! It's part of the disease.

Also, make sure you have a POA/AMD in place ASAP. You want to be able to step in and care of her when she can't herself (and also with alternates in case your FIL can't do it all). You will be making a lot of medical decisions without your MIL's input and that's okay. Doing things for her instead of with her will be the new normal. [/quote]

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