Background: Current practice guidelines recommend against Apolipoprotein E (APOE) testing. However, advances in Alzheimer’s disease (AD) research may soon change this. Objective: To examine longitudinally the experience of learning an APOE result and, if an ɛ4 carrier, taking a disease-specific treatment to reduce one’s risk of AD. Methods: Fifty ɛ4 carriers and 20 non-carriers completed semi-structured interviews 3 months and 15 months after APOE disclosure. Results: Individuals generally understand their APOE results. While non-carriers felt relief, ɛ4 carriers often described themselves as disappointed by their result but nevertheless glad to know. Carriers expressed concerns about stigma and discrimination, including in the workplace. Carriers adopted new health behaviors at higher rates than non-carriers and revised their future plans to account for their increased risk of AD. Individuals participating in research were hopeful that their participation would help them or others; individuals who learned they were at increased risk for AD but who could not participate in research were disappointed. Conclusion: Providers disclosing APOE results should be sensitive to how APOE results shape emotions, self-perceptions, and attitudes about memory; raise concerns about stigma and discrimination in personal and professional relationships; influence health behaviors and decision-making; and can have follow-on effects on family members.

Background: Participants in Alzheimer’s disease (AD) prevention studies are generally required to enroll with a study partner; this requirement constitutes a barrier to enrollment for some otherwise interested individuals. Analysis of dyads enrolled in actual AD trials suggests that the study partner requirement shapes the population under study. Objective: To understand if individuals can identify someone to serve as their study partner and whether they would be willing to ask that individual. Methods: We conducted semi-structured interviews with cognitively unimpaired, English-speaking older adults who had previously expressed interest in AD research by signing up for a research registry. We also interviewed their likely study partners. Audio-recorded interviews were transcribed and coded in an iterative, team-based process guided by a content analysis approach. Results: We interviewed 60 potential research participants and 17 likely study partners. Most potential participants identified one or two individuals they would be willing to ask to serve as their study partner. Interviewees saw value in the study partner role but also understood it to entail burdens that could make participation as a study partner more difficult. The role was seen as relatively more burdensome for individuals in the workforce or with family responsibilities. Calls from the researcher to discuss the importance of the role and the possibility of virtual visits were identified as potential strategies for increasing study partner availability. Conclusion: Efforts to increase recruitment, particularly representative recruitment, of participants for AD prevention studies should reduce barriers to participation by thoughtfully designing the study partner role.

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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.