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There is no one answer to whether or not you tell someone about the diagnosis. It will depend on the individuals involved (how have they dealt with similar things in the past), the stage of the disease and how the family believes the news will be taken. The quot;rightquot; answer will vary depending on the Alzheimer's person, the caregivers and the professionals involved. Since this probably makes the answer as clear as mud, here are some guidelines I try to use when asked this question:
- The person you are telling will probably not understand all or even most of what it means to have Alzheimer's. The cognitive impairments in comprehension mean this concept is probably a little too complex. So, telling someone they have Alzheimer's needs to be done in a manner in which the person you are telling can understand it. If someone is already advanced enough, the question is moot as they probably can't learn the new word, so they are told they have quot;memory problemsquot; because that is what they can understand.
- The patient has a good chance of forgetting the discussion, but remembering the emotion. So you can tell them, they promptly forget five minutes later, but if the telling upset them they will remember being upset and hearing the word could trigger being upset in the future. In either event, be prepared to have this conversation over and over.
- If, in the past, they have dealt poorly with bad medical news, they will probably do so now. Remember, with Alzheimer's the primary goal is to keep the person as safe and comfortable as possible. If you think telling them will only upset them, and they won't understand, why tell them? Also ask yourself if they would want to know.
- Whose needs are being served by telling the person? Often, the caregiver firmly believes the personatient should know. This can be perfectly valid, but if the cognitive impairments have advanced to the stage that the person can not understand, then all that is being done is frustrating the person.
- Try telling them in more general terms, and see how they respond. If they don't deal well with having quot;memory problemsquot; they probably will deal worse with having Alzheimer's. If they respond well, try giving them some more information...until everyone is at a level of comfort that is best.
- Often the person knows something is wrong, but not what it is. If they are in denial (which by the way is not a river in Egypt in this case), is it worth it to force them to confront this? If they have a definition that works for them, is it worth it to force them to change it? Remember, each person has his or her own reality and we must enter it, they can no longer enter ours.
With my own grandmother, she knows there is something wrong, though it is probably Multi-Infarct Dementia, not Alzheimer's, putting a different twist on this. Still, I have phrased things in terms of quot;memory lossquot; which she is comfortable with. This will also make the upcoming MRI, neurological evaluations, etc. much smoother (she never liked doctors). I have seen this situation go very badly with some of the families I have worked with, I have seen it go very well. The most important thing does seem to be meeting the personatient where they are at, and allowing them to find a definition for what is wrong with them they find comfortable and understandable.
by Daniel Paris, MSW
Memory Disorders Unit
Massachusetts General Hospital
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