Johns Hopkins Health Alert
Should Patients Be Told They Have Alzheimer's Disease?
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 percent had been given the diagnosis by the doctor, but only 49 percent of patients had been told. Of the patients who were told, 46 percent took the news well, and 51 percent reacted poorly. However, family members still overwhelmingly thought that a person diagnosed with Alzheimer’s disease should be told the truth (72 percent).
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.
- Confusion, anger and denial are common reactions. If they occur, don’t try to argue with or convince the person -- further detailed discussion likely will not be helpful.
- Don’t be surprised if the person already suspects that he or she has Alzheimer’s disease.
- Provide as much information as the patient is able to understand, especially about symptoms, medications and upcoming lifestyle changes.
- Watch for signs of sadness, anger, frustration, or anxiety and let the patient know that these are understandable feelings and you are open to discussing his or her needs and emotions.
- Finally, reassure the person that you, the doctor, and other caregivers will continue to provide help and support.
Posted in Memory on August 8, 2006
Reviewed June 2011
Medical Disclaimer: This information is not intended to substitute for the advice of a physician. Click here for additional information: Johns Hopkins Health Alerts Disclaimer
Notify Me
Would you like us to inform you when we post new Memory Health Alerts?
Comments
Health Alerts registered users may post comments and share experiences here at their own discretion. We regret that questions on individual health concerns to the Johns Hopkins editors cannot be answered in this space.
The views expressed here do not constitute medical advice, and do not represent the position of Johns Hopkins Medicine or Remedy Health Media, LLC, which has no responsibility for any comments posted on this site.
I am the caretaker of my husband, age 92. Between your Health papers and his Psycologist I'm managing to understand AD and cope, We have not told him his diagnosis but that he has a memory problem, he is in denial of any cognizant impairment.
Posted by: carlos85 | March 22, 2010 12:08 PM
Post a Comment
Already a subscriber?
Login
New to Johns Hopkins Health Alerts?
How definitive is a diagnosis of AD? I thought that to date there is no test that can determine AD to any great degree of accuracy (i.e., in living patients.) Have there been any efforts made to confirm by autopsy diagnoses of AD, to estimate the accuracy of AD diagnoses?
Posted by: linda1445 | August 8, 2006 12:17 PM