Disclosing a diagnosis of dementia: Is age a factor?

Increasing public awareness, coupled with the wider availability of drug therapies for some dementing conditions, means that carers are often informed of the diagnosis of dementia. However it is unclear how much sufferers themselves are told about their diagnoses. There are a number of fears about the possibly harmful effects of giving sufferers this information, but these may be balanced by potential benefits. The aims of this study were to investigate how many sufferers of dementia were given diagnostic information, whether their age was a factor in whether they learned this information, who told them the diagnosis, and whether carers would wish to know themselves if they had dementia (and if this related to whether the sufferer learned their diagnosis). The study also aimed to elicit carers' reasons for giving or withholding diagnostic information. A self-report questionnaire was completed by 71 carers recruited through old age psychiatry services in East Anglia. Half of the sufferers had learned their diagnosis, more from their carers than their doctors. The age of the sufferer was found to be related to whether or not doctors told them their diagnosis. This was independent of the type of dementia (Alzheimer's or Pick's disease) or the specialism of the diagnosing doctor. This study did not elucidate reasons for this age effect, which could be the result of 'agist' attitudes by doctors, younger sufferers for information. Carers' wishes regarding themselves were related to whether they gave diagnostic information to the sufferer. Only 21% of carers were given an opportunity to discuss the issues involved. Younger carers were significantly more likely to feel that such an opportunity would have been useful. Most of the carers who had informed the sufferer said that the sufferer had wanted to know, or needed a meaningful explanation for their difficulties, rather than giving more practical legal or financial reasons. Carers who had not disclosed feared that diagnostic information would cause too much distress, or that the sufferers' cognitive impairments were too great an obstacle.