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

Key summary points: Aim: This study was to evaluate changes in attitude over a 20-year period. Findings: Alzheimer diagnosis disclosure has evolved from being viewed as evoking a negative emotional response to being information that can positively facilitate proactive future life planning. Message: Regarding AD disclosure, Irish family members historically valued paternalism and now place an increased value on patient autonomy. 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. [ABSTRACT FROM AUTHOR]