Dementia, Sexual Autonomy, and Gatekeeper Responsibility

1. Dementia, Sexual Autonomy, and Gatekeeper Responsibility Elizabeth Victor, Ph.D. Visiting Assistant professor, philosophy Grand Valley State University Laura Guidry-Grimes, M.A., A.B.D. Doctoral Candidate, philosophy Georgetown University International Conference for Clinical Ethics Consultation

2. Introduction & Outline International Conference for Clinical Ethics Consultation

3. Outline • Presentation of cases to frame discussion • Capacity modeling for sexual decision-making • Sexuality and well-being in the twilight of identity • Recap of case findings • Recommendations: Institutional measures • Establishing a policy to guide caregiver practice • Determining a baseline • Geriatric ethics consultation International Conference for Clinical Ethics Consultation

4. Introduction: The Challenges • Stylized Case 1: Janie • Stylized Case 2: Earl • Questions arising from cases: • Which residents have sufficient capacity for sexual activity? • Do these relationships support or threaten well-being? • What are the responsibilities of caregivers, who act as gatekeepers? International Conference for Clinical Ethics Consultation

5. Capacity modeling for sexual decision-making International Conference for Clinical Ethics Consultation

6. More risk to individual: Higher standard for capacity More certainty req’d Risk and Autonomy in Context • Concern: Over-idealized interpretations of capacity • Exclusionary, neglect relational features of agency • Should seek to identify reasonable standards • Sliding-Scale models • Risks/benefits – as judged by patient’s minimally consistent aims, values – set threshold • Decision-specific, choice-specific Less risk to individual: Lower standard for capacity Less certainty req’d International Conference for Clinical Ethics Consultation

7. Risk and Autonomy in Context • How to evaluate risk in sexual activity • Similar to choosing ice cream? • The ice cream analogy misses the ways in which consenting to sex involves intimacy, identity, and vulnerability • All of these are bound up with who the sexual partner is and how gatekeepers control available options • Application to cases International Conference for Clinical Ethics Consultation

8. Sexuality & Well-Being International Conference for Clinical Ethics Consultation

9. In the Twilight of Identity • Supporting sexuality for people whose sense of self is fading • How do we resolve tensions when sexual behavior does not cohere with long-standing values? • Narrative arc and empathic access as a way to know when and how to support resident’s actions • Recognize the power of caregivers and family • Involving family members carries heavy moral costs • Application to cases International Conference for Clinical Ethics Consultation

10. Recommendations International Conference for Clinical Ethics Consultation

11. Institutional & Interactive Policies • Establishing a policy to guide caregiver practice • Many caregivers report seeking guidance from policies, but few institutions have explicit policies about how to handle residents’ sexual activities. • Determining a baseline • At intake, establish and periodically track sexual decision-making capacity • May include observational measures over time • Help caregivers tailor differences in need for individuals • Geriatric ethics consultation • Help alleviate moral distress • Track exclusionary systems and practices International Conference for Clinical Ethics Consultation

12. Thank You! Elizabeth Victor evictor@mail.usf.edu Laura Guidry-Grimes lkg8@georgetown.edu

13. Questions? International Conference for Clinical Ethics Consultation