This quandary is reflected by recent surveys that demonstrate a paternalistic approach by doctors and family members in withholding the diagnosis from patients. In a 1996 study, 100 family members of patients with AD consecutively attending a memory disorders clinic were asked whether the patient should be told their diagnosis (Maguire et al., 1996). Of these, 17 felt that their relative should be told their diagnosis and 83 said that they should not. The family members were asked to give the single main reason why the patient should or should not be informed. The main reason given for not revealing the diagnosis (51 family members) was that it would upset or depress the patient. Only five family members stated that it was the 'right' of the patient to be told their diagnosis.
When subsequently asked whether they themselves would want to be told the diagnosis should they ever develop AD, 71 family members said that they would want to be informed and 29 would not. The majority of those who expressed a wish to be told (36 family members) said that it would be their right to be told their diagnosis. This study illustrates the paradox between what relatives of AD sufferers wish for the patient and what they would wish for themselves.
In determining the attitudes of older adults on being told the diagnosis of dementia, 156 community-dwelling healthy older persons were presented with vignettes of two patients, one with AD and one with terminal cancer, and then questioned about their attitudes towards these illnesses (Holroyd et al., 1996). Most participants (79.5%) responded that they would prefer to know if they had AD, but the number was significantly fewer than those who would want to know if they had terminal cancer (91.7%). Among married subjects, 80.2% would want their spouse to know if they had cancer but only 65.7% would want their spouse to know if the spouse had AD. Paternalism is common in situations where one individual feels overprotective towards a more vulnerable second individual. In a condition such as dementia where there may be an erosion in insight and reduction in control of emotion, paternalism is frequent in carers and this is an understandable and predictable psychological response.
In a study by Erde et al., 224 healthy adult patients aged over 21 years were asked if they would like to be told that they have a diagnosis of AD (Erde et al., 1988). Ninety percent expressed a wish to be told of the diagnosis, citing such benefits as being able to plan for the future and being able to obtain a second opinion. However, few people within this group knew someone with dementia-like symptoms (30.5%) and the majority was young (43.7% aged <50 years) so the scenario was largely hypothetical. Interestingly, the survey raised the question of confidentiality: almost one-third (31.9%) reported that they would want no one told if they were not told themselves, 12.1% indicated that they would not want their spouse told, and 18.2% indicated that they would not want adult children told.
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