Peter V. Rabins, M.D., M.P.H, Codirector of the Division of Geriatric and Neuropsychiatry at Johns Hopkins, offers advice on this difficult decision.
Most Americans expect that their doctor will inform them of all medical findings and that they will be able to make their own decisions about their health care. Alzheimer's disease, however, presents two unique problems. First, many patients are unaware that they have a memory problem and, even when informed, are not able to understand or accept this fact. Second, since memory is impaired in all patients with Alzheimer’s disease, they often cannot remember the medical information once they have been told.
What, then, should doctors and caregivers tell patients with Alzheimer’s disease?
The American Medical Association recommends telling a person that he or she has Alzheimer’s disease, if at all possible, which means taking into account the degree of remaining cognitive function. A recent study, however, indicates that doctors are far more likely to give the diagnosis to a family member than to the person with Alzheimer’s disease. Researchers surveyed 57 family members of people with dementia and found that 93% had been given the diagnosis by the doctor, but only 49% of patients had been told. Of the patients who were told, 46% took the news well, and 51% reacted poorly. However, family members still overwhelmingly thought that a person diagnosed with Alzheimer’s disease should be told the truth (72%).
Peter V. Rabins, M.D., M.P.H, Codirector of the Division of Geriatric and Neuropsychiatry at Johns Hopkins, believes in full disclosure. “Since it is customary and desirable to be honest with patients regarding their health status,” he says, “I believe it appropriate to indicate to everyone, at the time of assessment, that a problem with memory is present.”
Having the Conversation About the Alzheimer’s Disease Diagnosis
If you are a family member who has been told of your loved one’s Alzheimer’s disease diagnosis, you need to decide whether and how to share this news with the patient. If you decide to tell the person about the Alzheimer’s disease diagnosis, take some time to plan your approach and to anticipate the person’s reactions:
- Choose your setting carefully. A conference, consisting of you, other caregivers, the doctor, and the patient may be helpful for some people; others may respond better to a one-on-one conversation. If you fear the patient might direct anger at you, ask his or her doctor to deliver the Alzheimer’s disease diagnosis.