Should Patients Be Told They Have Alzheimer’s
Some are glad to know the cause of their
memory problems; others can’t accept it.
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 in informing patients that
they have a disease. 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 the 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 dementia should be told the truth (72%).
Peter V. Rabins, M.D., M.P.H, author of this White Paper, 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.”
What To Expect
Some patients respond by denying the problem (“There’s
nothing wrong with my memory” or “I might have a
little trouble, but I’m like everyone else my age”).
If a patient reacts in this manner, it might be best to drop
the issue because such remarks imply that individuals are unable
to appreciate the fact that they have a memory problem, often
because the disease has impaired their capacity to perceive that
such a problem exists.
If the person resists accepting the fact that he or she has
Alzheimer’s disease, there is little benefit in forcing
the issue, says Dr. Rabins. “The reason most patients are
unaware of the fact that they have Alzheimer’s disease
is an intrinsic part of the disease itself—that is, the
disease in some way blocks an individual’s ability to understand
or appreciate any mental deficits,” he points out.
On the other hand, some patients benefit from being informed.
Many do not react to the news by giving up; instead, a clear
diagnosis can actually be reassuring—the patient knows
that a physical illness is causing the memory problems. The amount
of information that patients can comprehend about their diagnosis
and prognosis depends on the stage of their illness. But just
putting a name to their problem is helpful for many people.
If a person has not written a will or executed an advance directive,
for example, then he or she can take this opportunity to do so.
Because cognitive decline is inevitable with Alzheimer’s
disease, it is important that these tasks be done as early as
possible in the illness. Other business, financial, or personal
issues can also be addressed while the person with Alzheimer’s
disease still has the capacity to make informed decisions. In
addition, people with mild Alzheimer’s can still make valuable
contributions: For example, herb grower Thomas DeBaggio, diagnosed
with Alzheimer’s at age 57, responded to his diagnosis
by writing two memoirs, including the well-received Losing
My Mind: An Intimate Look at Life with Alzheimer’s.
Also at issue is access to clinical trials of investigational
treatments. Although family members can give consent for people
with dementia, it is preferable for the person to give this consent
Having the Conversation
If you are a family member who has been told of your loved one’s
diagnosis, you need to decide whether and how to share this news
with the patient. If you decide to tell the person about the
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 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
• 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
• Finally, reassure the person that you, the doctor,
and other caregivers will continue to provide help and support.