Senior citizen woman in wheelchair in a nursing home.

Seniors’ Perspectives on Dementia and Decision-Making

By James Toomey

In order to make a decision recognized in law — to enter into or enforce a contract, buy or sell property, or get married or divorced — an individual must have the mental capacity the law requires for the decision. As people, especially older adults, develop dementia, their decision-making abilities are increasingly compromised, and the law begins to find that they lack capacity for particular decisions.

The standards governing capacity determinations, however, are notorious for being vague, inconsistently applied, and excessively curtailing the rights of those with dementia. Part of the problem, I think, is the lack of an agreed-upon normative theory for when in the course of dementia the law ought to intervene in individual decision-making. That is why, here on Bill of Health, I’ve previously called for understanding the perspectives of seniors — the population affected by the doctrine of capacity most closely and most often — on this normative question.

In my recent publication “Understanding the Perspectives of Seniors on Dementia and Decision-Making” in AJOB Empirical Bioethics, I’ve begun to do so, reporting the results of an empirical study that I conducted with the Petrie-Flom Student Fellowship in the 2018-19 academic year. The study, which involved an online survey of and interviews with older adults, revealed a heterogeneity of ways of thinking about the problem, supporting a flexible legal doctrine that would assist people in making their own choices. Notwithstanding the diversity, however, the data reveal several conclusions and tensions of interest to academics and healthcare and legal practitioners.

First, there was widespread support in the study cohort for the model of supported decision-making, which has become popular in scholarship and some legislative reforms, as opposed to the traditional model of surrogate decision-making. Under the former model, appointed supporters help an individual with dementia reach and communicate a decision without stripping them of ultimate legal authority, while the latter appoints a surrogate decision-maker to make decisions on behalf of the individual, subject to judicial review.

My survey participants soundly rejected the surrogate decision-making model — indeed, with respect to each kind of decision asked about, more respondents expressed that they would rather lose the ability to make that decision entirely than have a surrogate decision-maker choose for them. And with respect to each kind of decision, at least a plurality of respondents expressed that they would want to make the decision with the help of family and friends.

Next, the results suggest that seniors want to retain the right to make more personal decisions — those intimately connected with a sense of self and family relationships — on their own longer into the course of dementia than less personal decisions. For example, while 22% and 16% of respondents wanted to retain the authority to make decisions about end-of-life care and marriage, respectively, through the course of dementia, only 8% felt the same way about the decision to make a large donation.

If further substantiated, this finding suggests that the current doctrine of capacity, which requires greater cognitive functioning for more complex rather than less personal decisions, is out of step with the perspectives of seniors.

Third, the cognitive and personal features respondents felt were most essential to their continued right to make decisions had more to do with long term memory and relationships than mechanical cognitive functioning or values.

For example, while 64.4% of respondents expressed that they would not want to be permitted to change their will after the loss of the ability to recognize family and friends, and 59.7% said the same for long-term memory, only 27.5% said that short-term memories mattered to them in that way, and moral values, 23.7%. This suggests that capacity doctrine’s focus on contemporaneous cognitive functioning may be misplaced — about which I’ll have more to say in a paper forthcoming in the spring issue of the Elder Law Journal.

Finally, analysis of the qualitative data revealed two tensions worth keeping in mind in practice.

The first is that, while participants expressed a widespread concern for abuse, they appeared to misunderstand where it was most likely to come from by also expressing absolute trust in family members. Because there is substantial evidence that most elder abuse — particularly financial abuse — is committed by family members, practitioners working with elders should be aware that elders’ trust of family members can serve as a vector for abuse.

Perhaps most challengingly, the data revealed that while many participants hoped that medical and other professionals could simply tell them when they should no longer make decisions independently, participants thought of the normative question of when intervention is permissible in terms of the philosophical construct of personal identity. In other words, participants expressed that they would want to lose the right to make decisions independently after they felt that were no longer the same person they had been their whole life.

But personal identity is not something that can be measured by medical science. Indeed, it is a metaphysical question intimately tied up with ethical questions about what matters to who we are and why. As we move forward in reforming this doctrine then, we must be cognizant of the fact that what seniors really want us to measure may not be medical.

James Toomey

James Toomey is a Climenko Fellow and Lecturer on Law at Harvard Law School. His research focuses on bioethics, health law, and elder law. His scholarship has been published or is forthcoming in the Journal of Law and the Biosciences, the Elder Law Journal, and AJOB Empirical Bioethics.

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