Meaning from tragedy: exploring attitudes toward dementia patient participation in research

Abstract

Background: Several prominent bioethics committees currently restrict dementia patient participation in research to projects that are low risk or offer potential benefit to the participant (Bernat). While these barriers were crafted to protect persons living with dementia, they may prevent them from contributing to non-therapeutic research, a meaningful and rewarding effort that might not improve their own illness but could help future patients. One avenue toward preserving patient autonomy would be a dementia-specific advance directive which would outline wishes for research participation in the event of cognitive impairment. However, there remains the question of whether it should include options for specific procedures (e.g., MRI, blood tests, lumbar puncture) or merely list broad categories of study risk (e.g., low, moderate, high) to which patients could consent. Before implementing novel legal measures, it is critical to examine attitudes of older individuals toward advance planning for research participation. Methods:The current project will rely on semi-structured telephone interviews with cognitively intact seniors to investigate attitudes toward dementia patient participation in research. Broadly, subjects will be prompted to reflect upon (i) their willingness to participate in therapeutic and/or non-therapeutic research should they develop dementia, (ii) the role of an advance directive and surrogate-decision maker in the context of research participation, and (iii) the preferred format for a research addendum to a dementia-specific supplement. Notes will be taken during interviews and analyzed quantitatively and qualitatively for salient themes. Results: This study has been approved by the Dartmouth Committee for the Protection of Human Subjects. Interviews will begin in the Fall of 2021. Conclusion: Scientific research is the strongest weapon in the ongoing fight against dementia. Cognitively impaired individuals could be vital members of this effort. By exploring attitudes of older individuals toward advance planning for research participation, this project frames lived experiences within neuroethics and law. Such realworld opinions will ultimately inform the creation of policy and legal measures to best serve this unique population.