Family members' attitudes towards telling the patient with Alzheimer's disease their diagnosis: a 20-year repeat
M M C O'Brien1, O Hannigan2, C Power2
1Memory Clinic, Mercer's Institute for Research on Ageing, St. James's Hospital, James's Street, Dublin 8., Dublin, Ireland. drmichelleobrien@gmail.com.
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.
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