Key summary points
This study was to evaluate changes in attitude over a 20-year period.AbstractSection 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.AbstractSection Message
Regarding AD disclosure, Irish family members historically valued paternalism and now place an increased value on patient autonomy.
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).
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.
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.
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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Ms. Rachel Farley (secretary), Ms. Irene Bruce (nurse) and Dr. Robert Coen (neuropsychologist).
This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.
Conflict of interest
There are no known interferences with objectivity in this study.
Ethics approval was obtained from the hospital’s ethics board.
Consent to participate
Each respondent completed consent form including consent to participate.
Consent for publication
Each respondent completed consent form including consent to publication.
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O’Brien, M.M.C., Hannigan, O., Power, C. et al. Family members’ attitudes towards telling the patient with Alzheimer’s disease their diagnosis: a 20-year repeat study . Eur Geriatr Med (2021). https://doi.org/10.1007/s41999-021-00464-w
- Alzheimer’s disease