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

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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.

References

  1. Maguire CP, Kirby M, Coen R, Coakley D, Lawlor BA, O’Neill D (1996) Family members’ attitudes toward telling the patient with Alzheimer’s disease their diagnosis. BMJ 313(7056):529–530

    Article  CAS  Google Scholar 

  2. Robinson SM, Canavan M, O’Keeffe ST (2014) Preferences of older people for early diagnosis and disclosure of Alzheimer’s disease (AD) before and after considering potential risks and benefits. Arch Gerontol Geriatr 59(3):607–612

    Article  Google Scholar 

  3. Clayman ML, Roter D, Wissow LS, Bandeen-Roche K (2005) Autonomy-related behaviors of patient companions and their effect on decision-making activity in geriatric primary care visits. Soc Sci Med 60(7):1583–1591

    Article  Google Scholar 

  4. Caselli RJ, Langbaum J, Marchant GE, Lindor RA, Hunt KS, Henslin BR, Dueck AC, Robert JS (2014) Public perceptions of presymptomatic testing for Alzheimer disease. Mayo Clin Proc 89(10):1389–1396

    Article  Google Scholar 

  5. Adelman RD, Greene MG, Ory MG (2000) Communication between older patients and their physicians. Clin Geriatr Med 16(1):1–24, vii

    Article  CAS  Google Scholar 

  6. Daniels v. Heskin (1954) IR 73

  7. Campbell M (2015) Montgomery v Lanarkshire health board. Common Law World Rev 44(3):222–228

    Article  Google Scholar 

  8. Pinner G, Bouman WP (2002) To tell or not to tell: on disclosing the diagnosis of dementia. Int Psychogeriatr 14(2):127–137

    Article  Google Scholar 

  9. Dail Eireann (1937) Bunreacht na hÉireann. Dublin

  10. Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101

    Article  Google Scholar 

  11. Herring J (2016) Medical law and ethics. Oxford University Press, Oxford

    Book  Google Scholar 

  12. Werner P, Karnieli-Miller O, Eidelman S (2013) Current knowledge and future directions about the disclosure of dementia: a systematic review of the first decade of the 21st century. Alzheimers Dement 9(2):e74-88

    Article  Google Scholar 

  13. Council of Europe (1997) Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine: convention on human rights and biomedicine CETS No. 164, Oviedo, 4.4.

  14. Irish Medical Council (2016) Guide to professional conduct and ethics for registered medical practitioners, 8th Ed

  15. European Convention on Human Rights Act (2003) Irish Human Rights Equality Commission

  16. O’Shea E, Keogh F, Cooney A (2019) The continuum of care for people with dementia in Ireland. National Dementia Office, Tullamore

    Google Scholar 

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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.

Author information

Authors and Affiliations

  1. Memory Clinic, Mercer’s Institute for Research on Ageing, St. James’s Hospital, James’s Street, Dublin 8., Dublin, Ireland

    M. M. C. O’Brien, O. Hannigan & C. Power

  2. Mercer’s Institute for Research on Ageing, St. James’s Hospital, James’s Street, Dublin 8., Dublin, Ireland

    B. Lawlor & D. Robinson

Authors
  1. M. M. C. O’Brien
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  2. O. Hannigan
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  3. C. Power
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  4. B. Lawlor
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  5. D. Robinson
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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.

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 12, 881–885 (2021). https://doi.org/10.1007/s41999-021-00464-w

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  • DOI: https://doi.org/10.1007/s41999-021-00464-w

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