Alzheimer’s Caregiving: Should You Tell the Patient the Diagnosis?

When I was in medical school in the 1980’s, we were taught that the patient should always be made aware of his or her diagnosis. Of course, right?

The only exception to this, we were told, was a diagnosis of Multiple Sclerosis (MS). I remember being shocked that a physician was expected NOT to divulge that information. The logic was that since there was no treatment available at that time, it would only cause irreparable harm for someone to know they were going to be living with a nightmare of a diagnosis. The neurologist giving this lecture was highly respected in the academic community. I took his advice to heart and actually followed through with it on one or two patients early in my career, but it felt very wrong. Soon after, treatment for MS did develop, and I abandoned that approach.

I have been asked by a few family members of patients not to tell their loved ones of a certain diagnosis, most often, Alzheimer’s disease.

You can imagine the reasons: “It would devastate Mom!” “Why would we tell Dad he has Alzheimer’s disease if there is no effective treatment?” “He won’t believe you, so why push it?”

Harvey and I were together at each of his medical visits. At his first evaluation, he was told he had Mild Cognitive Impairment, but the possibility that it might lead to Alzheimer’s disease was never stated. After neuropsychological testing revealed the probable diagnosis as Alzheimer’s, we were told, together. In the following doctor visits, the diagnosis was not mentioned, but Harvey’s memory issues were always discussed, and he was tested to document decline. We both knew why he was seeing a neurologist.

I tend to follow this same approach with my patients. If someone comes in with concerns about their memory, I let them know what to expect from a work-up, but that a more definitive diagnosis takes time, documenting decline over time. Once I am relatively sure of the cause of the patient’s dementia, I tell them. If a family member is not present, I ask permission to talk to a close family member, saying that it’s very important that the person closest to them know.

As the disease progresses, and it becomes harder for the patient to understand what is happening to their cognition, I use a simpler term, such as “memory trouble.” When the dementia is impacting their driving ability, I don’t tell the patient that they can’t drive because they have Alzheimer’s disease. Instead, I name the skills they have lost that prevent them from being a safe driver.

If family insists that their loved one not be told of an Alzheimer’s diagnosis, I have occasionally told the patient that they have a type of dementia, and left it at that. If the patient asks directly if they have Alzheimer’s, I may say, “I think that you do, but we can never be completely sure.”

It is important that patients understand that they have a progressive dementia. I would hope that the patient, especially early in the diagnosis, could participate in making decisions about their future care. It’s also important that the patient be able to sign legal documents such as living wills and powers of attorney, while they are still competent. And make plans to live life fully!

Should a patient be told they have Alzheimer’s disease? Yes. But gently. And with compassion.