Should you, or shouldn’t you?
2-9 TELLING PATIENTS THEY HAVE ALZHEIMER’S DISEASE
Important for planning their future, and no evidence of ill effects
A recent study reported that most family members accompanying patients with Alzheimer’s disease (AD) to a clinic did not want the patients to be informed of the diagnosis, although most of the family members stated that they would want to be told if they themselves had the disease.
What are doctors’ responsibilities in this regard? To whom and when should information be given? Patients’ right to know is a well established priority. The rational for withholding information rests on preventing harm. But, arguments that awareness of the diagnosis does damage by causing stigmatization and depression are not based on evidence. Despite the association between confrontation of cognitive deficits and transient emotional reactions, there is no evidence of long term harmful sequelae. Alzheimer’s patients have the ability to deny their illness through psychological defenses or neuropsychological deficits. Thus, awareness of the diagnosis my not lead to lasting psychological damage.
There are arguments in favor of informing patients: 1) respecting autonomy and 2) maintaining in the doctor-patient relationship (trust). The issue may rest more on how patients are told than the precise diagnostic information. Communication through "patients led" discussions would diminish any adverse emotional effects of sharing painful diagnostic information.
Telling the patient has important benefits: 1) provides an opportunity for patients, at least those with the capacity to do so, to participate in important decisions about health care and financial planning (as well as legal planning such as a durable power of attorney) before further cognitive loss occurs;
2) patients should know when and why to limit activities such as driving; 3) the era of "no available treatment" is ending; 4) patients may be given the opportunity to express informed consent to treatments while still able to do so.

BMJ, February 1, 1997; 314: 321-22. Editorial from New York Hospital-Cornell Medical Center, New York.
See also letters to the editor, BMJ February 1, 1997, pp. 375-76 :

"There are legal matters (for example, enduring power of attorney) that need to be resolved early in the dementia while the patient is still capable." "Research on the ‘use it or lose it’ hypothesis suggests that a patient may be able to delay the progression of the disease by contrived intellectual effort." "Ethical issues of confidentiality arise if a relative is told the diagnosis before (or instead of) the patient."
"Patients with mild dementia should generally be given enough information for them to understand their diagnosis and prognosis. Carers should not usually be given information that cannot also be imparted to the patient."
Conversely, however, another correspondent suggests — "Best practice is probably to allow the relatives to act as proxy for the patient. They should be told the diagnosis, prognosis, and proposed management plan and should be given information about necessary legal and social matters. Once this is done, a joint decision can be made about telling the patient. Patients should be informed if there is a positive benefit and not told if negative. This leaves an awful lot in the middle."

Comment:
This is important for both medical and ethical reasons. I believe the principle of patient autonomy will lead more clinicians to disclose information at early stages of dementia. How it is done is important. "Patient led" discussions give physicians an opportunity to seek out patient’s feelings and understanding and lead to gentle disclosure and guidance.
Ex-President Reagan’s informing the public about his development of early Alzheimer’s disease will, I believe, lead others to recognize the importance of early disclosure. Obviously, individualization is basic. RTJ

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