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Family members' attitudes toward telling the patient with Alzheimer's disease their diagnosis

^a Mercer's Institute for Research on Ageing, Saint James's Hospital, Dublin 8, Republic of Ireland

Correspondence to: Dr Maguire.

Advances in the accuracy of the diagnosis of Alzheimer's disease as well as progress in the genetics, aetiopathology, and therapeutics of the condition have stimulated a debate on whether patients should be informed of their diagnosis. We report the results of a survey of family members on their attitudes to the disclosure of the diagnosis.

Patients, methods, and results

A total of 100 consecutive family members accompanying patients with diagnosed Alzheimer's disease to a memory clinic were asked three questions by the assessing physicians (CPM, MK): should the patient with Alzheimer's disease be told their diagnosis; would they themselves want to be told their diagnosis should they develop Alzheimer's disease; and would they make use of a predictive test for Alzheimer's disease should it become available? They were also asked to state the reasons for their decisions.

Only 17 family members said that the patient should be told the diagnosis; 83 said that they should not. The main reason given was that the diagnosis would upset or depress the patient (table 1). In contrast, 71 family members wanted to be told their diagnosis should they develop Alzheimer's disease; most stated that it would be their right to be told their diagnosis. Seventy five family members would use a predictive test for Alzheimer's Disease; 42 of these said it would give them the opportunity to make provisions for their future and thereby reduce the burden on their families.

Table 1--Family members' views (n = 100) on telling the diagnosis of Alzheimer's disease
---------------------------------------------------------------------------------------------
                                          Yes                                            No
---------------------------------------------------------------------------------------------
Should the patient be told?
 Patient is aware that he/she is ill       7   Diagnosis would depress/agitate patient   51
 Patient's right to know                   5   Patient has a dread of developing         12
                                                 Alzheimer's disease
 Patient would cope better                 4   Would not understand diagnosis             8
 Informed consent for drug trials          1   No benefit in knowing                      5
                                               Would not want to be told of any illness   4
                                               Stigma of the diagnosis                    2
                                               Patient might commit suicide               1
Should you be told?
 My right to know                         36   Diagnosis would depress/agitate me        13
 Make provisions for my future            26   Would not want to be told of any illness  10
 Commit suicide                            6   No benefit in knowing                      3
 Explore treatment options                 3   Commit suicide                             2
                                               Stigma of the diagnosis                    1
Would you make use of a predictive test?
 Make provisions for my future            42   No benefit in knowing                     15
 Explore treatment options                18   Diagnosis would depress/agitate me         5
 My right to know                          8   Would not want to be told of any illness   3
 To help research into the disease         5   Not now, but at an older age               2
 Commit suicide                            2

Comment

The majority of relatives of patients with Alzheimer's Disease would not want the patient told the diagnosis, but would themselves wish to know if they developed the condition. This inconsistency may reflect a generational difference in the perception of the disease, apaternalistic desire by family members to protect patients from the harsh reality of their condition, or a reluctance of relatives to deal with the patient's knowledge and possible grief.

Most of those who opposed disclosure of the diagnosis to the patient felt that it could precipitate symptoms of anxiety and depression. However, Bahro et al have shown that when the diagnosis is given, both patients and family members often use denial as a defence mechanism to deal with it.² Many patients are aware of their progressive cognitive deficits, regardless of whether or not a diagnosis of Alzheimer's disease has been given. Insight may be an important determinant of reaction to disclosure, with lack of insight providing a degree of psychological protection. Retention of insight varies from patient to patient and seems unrelated to degree of cognitive deterioration.³ In insightful patients, the risk of depressive reactions or even suicide must be seriously considered after disclosure of any major illness. This seems no different in Alzheimer's disease. Two cases of suicide in patients told their diagnosis have recently been described.⁴ In our study, 10 family members said that they would consider committing suicide if they were diagnosed as having Alzheimer's disease.

In 1961, 90% of doctors expressed a preference for not telling cancer patients their diagnosis. By 1977 a complete reversal of opinion had occurred, with 97% of doctors favouring disclosure of the diagnosis.⁵ The reasons for not telling cancer patients their diagnosis in 1961 were similar to those now given for not telling patients with Alzheimer's disease their diagnosis. The change in policy among doctors coincided with advances in the management and treatment of cancer. Similar advances are being made with Alzheimer's disease today, so clinicians must decide whether to respect the wishes of family members not to tell patients their diagnosis, or to respect individual autonomy, inform patients, and involve them in the management of their condition.

A recent review which advocated disclosure of diagnosis emphasised that clinicians must evaluate each situation individually.¹ Family members as well as patients respond in various ways to the psychological threats presented by the diagnosis of Alzheimer's disease, and the issue of disclosure needs to be dealt with on a patient by patient basis.

Funding: Health Research Board of Ireland and Mercer's Institute for Research on Ageing.

Conflict of interest: None.

1. Drickamer MA, Lachs MS. Should patients with Alzheimer's disease be told their diagnosis? N Engl J Med 1992;326:947-51.
2. Bahro M, Silber E, Sunderland T. How do patients with Alzheimer's disease cope with their illness? A clinical experience report. J Am Geriatr Soc 1995;43:41-6. [Medline]
3. Michon A, Deweer B, Pillon B, Agid Y, Dubois B. Relation of anosognosia to frontal lobe dysfunction in Alzheimer's disease. J Neurol Neurosur Psychiatry 1994;57:805-9. [Abstract/Free Full Text]
4. Rohde K, Peskind ER, Raskind MA. Suicide in two patients with Alzheimer's disease. J Am Geriatr Soc 1995;43:187-9. [Medline]
5. Novack DH, Plumer R, Smith RL, Ochitill H, Morrow GR, Bennett JM. Changes in physicians' attitudes toward telling the cancer patient. JAMA 1979;241:897-900. [Abstract/Free Full Text]

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