Family members' attitudes towards telling the patient with Alzheimer's disease their diagnosis: a 20-year repeat study.

PURPOSE

Exploring family members' attitudes to an Alzheimer's disease diagnosis compared to that of a study 20 years prior by Maguire et al. (BMJ 313:529-530, 1996).

METHODS

The survey was a replica of that completed 20 years prior in the same department by Maguire et al. (BMJ 313:529-530, 1996). With ethics approval and consent, family members were surveyed regarding their attitudes towards a dementia diagnosis. Completed by doctors with 100 consecutive respondents accompanying patients to scheduled memory clinic appointments. Themes were generated, results compiled and compared to the previous study.

RESULTS

Respondents are now over four times more likely to favour disclosure over non-disclosure to a patient (chi-squared 68.142, p < 0.0001). A substantial decrease is evident in those listing fear of evoking a negative reaction. Accordingly, there is an increase in those referring to the benefits of disclosure.

CONCLUSION

The emerged theme was that of autonomy versus paternalism, with attitude shift reflecting that patient privacy is an established patient right, taking precedence over paternalistic preferences.