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ORIGINAL RESEARCH article

Front. Psychiatry
Sec. Aging Psychiatry
Volume 15 - 2024 | doi: 10.3389/fpsyt.2024.1419701
This article is part of the Research Topic Ethical Conflicts Regarding the Care of Older Adults with Dementia View all 3 articles

Perspectives on Advance Research Directives from Individuals with Mild Cognitive Impairment and Family Members: A Qualitative Interview Study

Provisionally accepted
Astrid Gieselmann Astrid Gieselmann 1,2*Jakov Gather Jakov Gather 3Marina Schmidt Marina Schmidt 2,4Mishal Qubad Mishal Qubad 5Jochen Vollmann Jochen Vollmann 2Matthé Scholten Matthé Scholten 2*
  • 1 Department for Psychiatry and Psychotherapy, Charité University Medicine Berlin, Berlin, Baden-Wurttemberg, Germany
  • 2 Institute for Medical Ethics and History of Medicine, Ruhr University Bochum, Bochum, North Rhine-Westphalia, Germany
  • 3 Department of Psychiatry, Psychotherapy and Preventive Medicine, LWL University Hospital, Ruhr University Bochum, Bochum, North Rhine-Westphalia, Germany
  • 4 Frankfurter Forum for Interdisciplinary Ageing Research (FFIA), Goethe University Frankfurt, Frankfurt, Hesse, Germany
  • 5 Department of Psychiatry, Psychosomatic Medicine and Psychotherapy, Goethe University Frankfurt, Frankfurt, Hesse, Germany

The final, formatted version of the article will be published soon.

    Advance research directives (ARDs) provide a promising way to involve individuals with mild cognitive impairment (MCI) in research decisions before they lose the capacity to consent. At the same time, the views of people with MCI on ARDs are underexplored. This study assesses the perceptions of people with MCI and family members on the benefits and challenges associated with ARDs.The aim of this study was to investigate the perspectives of individuals with MCI and family members of individuals with MCI on ARDs. We focus specifically on willingness to participate in nontherapeutic research, understanding of ARDs and the ethical considerations involved.Thirteen open-ended, face-to-face interviews were conducted using a semi-structured format. Seven interviews were conducted with individuals with MCI, and six with family members of individuals with MCI. The narratives were transcribed verbatim and qualitative content analysis was carried out.Research participation and ARDs were viewed positively, largely based on altruistic motives and the desire to contribute to society. The participants recognized the potential advantages of ARDs in reducing the decision-making burden on family members and maintaining personal autonomy. They also highlighted challenges in comprehending ARDs and navigating the complexities surrounding potential conflicts between current preferences versus prior ARD conditions.ARDs were predominantly seen as valuable instruments that enable individuals with MCI to participate in research. This study provides insights into the reasons why affected individuals are interested in drafting ARDs. These insights can guide the development of supportive interventions that are tailored to assist individuals with MCI and their families in navigating ARD processes.

    Keywords: research ethics, Dementia, Vulnerability, mental capacity, substitute decisionmaking, Altruism, qualitative interviews

    Received: 18 Apr 2024; Accepted: 26 Aug 2024.

    Copyright: © 2024 Gieselmann, Gather, Schmidt, Qubad, Vollmann and Scholten. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence:
    Astrid Gieselmann, Department for Psychiatry and Psychotherapy, Charité University Medicine Berlin, Berlin, 10117, Baden-Wurttemberg, Germany
    Matthé Scholten, Institute for Medical Ethics and History of Medicine, Ruhr University Bochum, Bochum, 44801, North Rhine-Westphalia, Germany

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