Many caregivers wonder whether or not they should tell their loved one about their Alzheimer’s diagnosis. This is not an easy decision to make. Often the best course of action is to let your loved one determine what you should say and not say.
At the time of initial diagnosis, early on in the disease, your loved one may know that they have some kind of problem and will have a lot of questions about what’s wrong. At this time, during the moments when they’re asking you directly, you should tell them that they have Alzheimer’s in an honest and straightforward manner. Your loved one’s doctor should help you with this task when breaking the news for the first time.
However, you will likely notice that over time your loved one forgets about the disease. Should you remind them? In most cases, no. Constant reminders and explanations can irritate them and often make situations worse. Even if they ask what is wrong, try to say just enough to put them at ease and try to be calm and gentle. For example, if dad tells you he needs to go to work, don’t tell him he quit once he was diagnosed with Alzheimer’s. Instead, simply remind him that he’s retired without going into the details why. Try to get them to refocus on positive memories or employ some other distraction to bring their mind someplace else.
This point may be challenging at times, but eventually your loved one will stop asking questions and become more accepting of their current situation. Trial and error will help you find the right approach for you and teach you ways to keep your loved one happy. Don’t let them feel frightened and alone, but don’t reopen old wounds about the diagnosis either. Consider using their own words for describing what’s happening. If they talk about “losing their memory,” use that as an explanation. Be flexible–if something’s not working, try something else. Watch your loved one’s reactions as you look for what gets results. Know that what works may change over time.
There is little to be gained from discussing the diagnosis: it is painful and confusing information. What matters more is how life is lived every day and the way forward. Sadly, there is nothing that can be done to reverse the disease. Focus instead on enjoying the remaining time with your loved one and on making them comfortable. As hard as it is to not be honest, kindness is important too.