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Respect for Autonomy in the Face of Dementia: The Case of Deception

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Living with Dementia

Part of the book series: Advances in Neuroethics ((AIN))

Abstract

This chapter concerns the ethics of using various forms of deception for the sake of dementia patients’ overall comfort, practices commonly adopted by caregivers and nursing homes. Although it may be argued that the benefits of such practices outweigh their harms, it still seems that patients are being treated disrespectfully by being deceived, casting doubt on whether doing so is morally acceptable. However, analyzing the disrespect of deception as consisting in a type of violation of autonomy, this chapter argues that the disrespect typical of deception does not apply to many of these practices, as they actually partially restore the patient’s autonomy rather than undermine it. In reaching this conclusion, the agential capacities of Alzheimer’s patients are considered in light of the requirements for autonomy and this disease’s neuropathology, in order to bring out the role of the deceptive practices in question in compensating for impairments of autonomy.

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Notes

  1. 1.

    My analysis is influenced by Hill [2] and Korsgaard [3].

  2. 2.

    Here I am using the term ‘person’ in a metaphysical sense, delineating a type of agent. This is not to be confused with a moral sense, which construes a ‘person’ as a bearer of special rights, leaving it open which beings qualify for those rights. It is also not to be confused with the current legal sense of ‘person’ which bestows legal rights on all (born) human beings, regardless of their capacities.

  3. 3.

    I am not taking a stand here on when this capacity is acquired in human development or on whether certain animals (e.g., the great apes) may also possess it.

  4. 4.

    Of course, a person does not come up with this design (Component 1 of autonomy) on their own, but rather in the context of interpersonal relationships. Still, the person makes the design their own in virtue of the attitudes the person holds (values, etc.).

  5. 5.

    Badhwar et al. [18] is a meta-analysis of available studies that supports this claim. However, Brier et al. [20] found an increase in the salience network connectivity only in pre-Alzheimer’s mild cognitive impairment (MCI), with a decrease in mild Alzheimer’s disease, and Thomas et al. [21] found unchanged connectivity in MCI compared to cognitively normal controls, but, again, decreased connectivity in mild Alzheimer’s disease.

  6. 6.

    Both this case and the above case of a grandmother are inspired by the story of Mrs. Rogoff discussed in Jaworska [4].

  7. 7.

    In a yet different type of case, the person with dementia would be learning about the death of a loved one for the first time, but they may be unable to process this news in the standard way. For example, they are likely to quickly forget who has died, but the emotional impact of the news would likely linger on, leaving the person with a general sense of grief that they are not in a position to understand and gradually work through. If a caregiver deceives the person in order to spare them from this sort of experience, this is more akin to the case from the previous paragraph – an attempt to compensate for an impairment of autonomy and therefore not disrespectful. (Thanks to Paula Wolfson for emphasizing this scenario.)

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Acknowledgement

An invitation to the “Should You Lie to a Person with Dementia?” panel at the McCoy Family Center for Ethics in Society at Stanford University inspired my work on this chapter. I am grateful to the participants in this event, as well as to the editors of this volume, for helpful comments, and to Shmuel Gomes for editorial assistance. Special thanks to Winston Chiong, Katherine Rankin, and William Seeley for sharing their knowledge of the neuroscience of Alzheimer’s disease, and to Winston Chiong for prompting several key corrections.

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Authors and Affiliations

  1. Department of Philosophy, University of California, Riverside, Riverside, CA, USA

    Agnieszka Jaworska

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  1. Agnieszka Jaworska
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Correspondence to Agnieszka Jaworska .

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Editors and Affiliations

  1. Department of Philosophy and Religious Studies, and Science Technology and Society (STS) Program, North Carolina State University, Raleigh, NC, USA

    Veljko Dubljević

  2. Department of Philosophy, University of North Carolina, Greensboro, NC, USA

    Frances Bottenberg

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Jaworska, A. (2021). Respect for Autonomy in the Face of Dementia: The Case of Deception. In: Dubljević, V., Bottenberg, F. (eds) Living with Dementia. Advances in Neuroethics. Springer, Cham. https://doi.org/10.1007/978-3-030-62073-8_4

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  • DOI: https://doi.org/10.1007/978-3-030-62073-8_4

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