Alzheimer’s affects the mind and has no cure, so it makes sense to consider that a person in the beginning stages of the illness might prefer not to know, or could crash into a hopeless depression if they find out.
Family members frequently struggle with the dilemma of whether or not to share a diagnosis of Alzheimer’s disease with a loved one, particularly when it is a parent. Doctors are regularly faced with this problem, especially when the patient is the only one to tell, such as elderly people who have outlived their spouses and other family members.
So how much does one tell the patient?
It’s a harder question than one even imagines. Researchers at the University Hospital in Nottingham, England found in a 1999 study that only 40 percent of the geriatricians and psychiatrists who responded to their survey regularly told their patients they had been diagnosed with Alzheimer’s disease.
Questions about the certainty of the diagnosis, doubts about the patient’s ability to understand, the level of insight and the possibility of detrimental effects were all factors that influenced the responses.
General practitioners surveyed in a study conducted by the Department of Geriatrics of Broca Hospital in Paris, overwhelmingly (72 percent) chose not to share the diagnosis with the patient for “psychological reasons” despite most (88 percent) believing it was their role to announce the diagnosis to the patient. The doctors were less reluctant to discuss the diagnosis with family members, but still were inclined to refer to symptoms such as stress, depression and behavior problems rather than put the name of “Dementia” to the problem.
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On the other end of the spectrum, Dr. Simone Gordon, an adjunct professor at Yeshiva University’s Wurzweiler School of Social Work and a long-time psychotherapist with a busy practice, was brief and to the point on the issue. “I think ethically the doctor should tell,” she said.
In a study conducted by researchers at the Department of Neurology in the Taipei Veterans General Hospital, family members had similar views.
The vast majority of those who were surveyed, 93 percent, said they would want to be told if they themselves were diagnosed with Alzheimer’s disease. When it came to being the bearers of bad news, not as many family members were willing to reveal such news to someone else in the family who had received that diagnosis, but still a clear majority (76 percent) thought that to be the best course of action.
In this study, family members struggled with the same important reasons to tell the patient as did the doctors. A patient’s or family member’s right to know, the possibility and responsibility of helping cope, and obtaining early treatments to slow down the progression of the illness were some of the reasons that convinced respondents it was best to share the diagnosis with the patient.
Those who did not agree were concerned about the risks of worsening the disease, causing the patient emotional distress or even to consider suicide, as well as other factors.
These figures were substantiated by a study carried out by a team led by P.M. Conor, who reported that 83 percent of family members who came along with the Alzheimer’s patient to the memory clinic did not want their relative to be informed of the diagnosis.
However, as in the Taiwan study, the majority of relatives – 71 percent — said they WOULD want to be told themselves in the same situation.
More than 80 percent of geriatric psychiatrists said they usually did not inform their Alzheimer’s patients who already reached a stage of severe dementia. However, they nearly always told those who were in the early stages.
The same doctors also reported an inverse relation with regard to informing caregivers about the diagnosis: they tended to share the information with caregivers of severely demented patients more than with caregivers of people only mildly affected.
Dr. Barnett S. Meyers, a Professor of Psychiatry at The New York Hospital Cornell Medical Center, makes a strong, well-documented and thoroughly-footnoted case that patients can generally bear the devastating news, and there is little justification for doctor or caregiver to interfere with a patient’s right to know:
“Arguments that awareness of the diagnosis of Alzheimer’s disease does damage by causing stigmatisation and depression9 are not based on empirical evidence. Thus, the greater than 20% prevalence of depression identified in early cases10 may result from a variety of causes, including awareness of memory loss symptoms and the pathophysiology of the disorder.11 Despite the association between confrontation of cognitive deficits and transient emotional reactions, there is no evidence of long term sequelae. Furthermore, the ability of patients with Alzheimer’s disease to deny their illness through psychological defences12 or neuropsychological deficits13 mitigates against arguments that awareness of diagnosis leads to lasting psychological damage.”
Dr. Barnett Meyers is clearly in favor of informing the patient of the diagnosis. Beyond the patient’s right to know, he goes on to emphasize the advantages of early treatment aimed at slowing the progression of the disease, which can best take place when a person is fully informed of their condition. A diagnosis of Alzheimer’s does not mean it is over, and a well-prepared person has many good days ahead. To drive home that point, the doctor headlines his editorial with a subtitle that sums up one clear reason for telling patients they have Alzheimer’s disease: “Important for planning their future.”
For more articles and information on dementia and caregiver tips visit www.AlzheimersWeekly.com
