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

Key summary points

AbstractSection Aim

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.

Abstract

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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Data availability

Data may be obtained via the corresponding author.

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Acknowledgements

Ms. Rachel Farley (secretary), Ms. Irene Bruce (nurse) and Dr. Robert Coen (neuropsychologist).

Funding

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

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Corresponding author

Correspondence to M. M. C. O’Brien.

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Conflict of interest

There are no known interferences with objectivity in this study.

Ethical approval

Ethics approval was obtained from the hospital’s ethics board.

Consent to participate

Each respondent completed consent form including consent to participate.

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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

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Keywords

  • Alzheimer’s disease
  • Disclosure
  • Attitude
  • Autonomy