In a recent posting, the question was asked about whether or not to tell someone with Alzheimer’s disease about his or her diagnosis. This is a complex question and one that may surface for many families.
While most would not raise such a question about a diagnosis such as cancer, the diagnosis of Alzheimer’s disease seems to highlight a greater feeling of uncertainty in the context of offering what feels ‘right’ or is in the best interest of a loved one with this disease.
Brian D. Carpenter, Ph.D., an assistant professor of psychology in Arts & Sciences at Washington University in St. Louis, stated that arguments in favor of telling the person he or she has Alzheimer’s disease are generally based on a respect for patient autonomy and the value of truth telling felt by families or in professional relationships. He goes on to say that thoughts against disclosure often reference the lack of useful treatments and the uncertainty of diagnosis and prognosis, and escalating feelings of hopelessness.
A recent article in the “Journal of the American Geriatrics Society” reported “disclosure of a dementia diagnosis does not prompt a catastrophic emotional reaction in most people, even those who are only mildly impaired, and may provide some relief once an explanation for symptoms is known and a treatment plan is developed.”
I feel that most Alzheimer’s patients should be told of their diagnosis, but the timing of the discussion, the extent of details, and the way it occurs are key to a reasonable outcome. What you choose to say or not say depends on the degree to which the person is troubled by or aware of their symptoms.
For instance, if the person is frustrated and says he can’t do things he once could, or wonders what’s wrong, it’s only fair to offer an honest explanation. If these experiences are not acknowledged, persons are left feeling frightened, alone, crazy.
Once told of their diagnosis, some persons may deny having Alzheimer’s, but they may acknowledge memory loss. If this is the case, then it makes sense to communicate using those words. Others may deny having any problems at all which is a natural defense mechanism for dealing with a devastating diagnosis, or it may be a symptom of the disease.
Most individuals with a dementia lose insight into their own deficits, or they simply forget that they are forgetful. Be sensitive to the person’s reaction. It’s probably best to allow the person’s reactions to set the tone for further communication about their diagnosis.
If your loved one accepts their diagnosis, provide reassurance that you’ll provide ongoing help and support. Remain open to their need to talk about the disease. Be aware of nonverbal signs of sadness, anger or anxiety, and respond with love and reassurance as best you can.
Overall, there is no clear right or wrong answer as to when, how, or whether to tell a loved one about an Alzheimer’s diagnosis. I do feel, however, that every individual has a ‘right to know’. Yet the delivery of the message can vary widely. The families I have met approach this issue differently, yet, in a way that makes sense for them and the person that they know best and love deeply.