Negotiations for a new international treaty on the rights of older persons are underway. Following decades of multi-stakeholder deliberations, the United Nations Human Rights Council last year established an open-ended Intergovernmental Working Group on Older Persons to draft a new “international legally binding instrument” aimed at “promoting, protecting and ensuring the full enjoyment of human rights by older persons.” As this group prepares for its first meeting Feb. 18-20 in Geneva, it will have to consider both traditional and contemporary human rights challenges.
Invariably, treaty negotiators will need to tackle the longstanding conundrum of effectively protecting older persons’ right to exercise legal capacity. Governments across the globe have struggled to balance respect for the autonomy of older people with effective safeguards for their well-being. On the one hand, too many older individuals with cognitive impairments have been subjected to overly broad court-ordered protection measures (i.e., guardianships) that have enabled rather than thwarted abuse and exploitation. On the other hand, many older persons who fail to plan adequately for the effects of their cognitive impairments are also abused and exploited. Thus, a top priority for treaty negotiators should be to deliver clear and practical normative guidance for States to use when crafting laws, polices, and programs that will affect the ability of older individuals to exercise legal capacity.
This treaty will play a pivotal role in the world’s race to meet the far-reaching challenges posed by its rapidly aging population. By 2030, for example, 1 in 6 people in the world will be at least 60 years old, according to the World Health Organization. As with the Convention on the Rights of Persons with Disabilities (CRPD), this treaty could help to close critical gaps in international human rights protections for a population that disproportionately experiences discrimination, marginalization, and exclusion. Treaty negotiators will benefit from provisions already adopted in non-binding global precursors, including the 1991 U.N. Principles for Older Persons and the 2002 Madrid International Plan of Action on Ageing, as well as binding regional instruments in the Americas and Africa, and the extensive needs assessment undertaken by the U.N. Open-Ended Working Group on Ageing. Though striking the correct balance between autonomy and protection has long bedeviled governments, treaty negotiators are better positioned than ever to signal the kinds of laws, policies, and programs that can help address the human rights implications of age-related cognitive impairments.
Aging and Decision-Making
Age-related cognitive impairments can affect older persons’ decision-making capacity and expose them to abuse and exploitation. Dementias are major neurocognitive disorders that typically involve significant decline from a previous baseline in one or more cognitive domains — attention, memory, executive function, language, perceptual abilities, or social cognition. Although many adults with dementia retain the ability to express values and make decisions, especially with support, they may struggle with complex planning, continuity over time, resisting undue influence, or fluctuations in capacity. Environmental factors such as whether someone lives alone, relies on a spouse or adult child, or resides in a facility also can exacerbate or ameliorate functional cognitive impairments, as can sudden life events such as the loss of a spouse.
Legal regimes should be responsive to these realities. They must likewise scrutinize whether protective measures — most notably, guardianship — that were designed to safeguard older persons experiencing cognitive impairments might nevertheless abet certain human rights harms. Balancing the competing interests of protecting older persons’ well-being while also enabling their autonomy requires carefully calibrated tools and processes that are responsive to both diverse cultural contexts and individual circumstances.
To strike this balance, governments need reliable guidance, especially as the international legal landscape surrounding this right show signs of fragmentation. The Protocol on the Rights of Older Persons in Africa recognizes an older person’s right to make decisions about their own well-being, while framing protection measures as a form of legal “assistance.” The European Social Charter recognizes the right of older individuals to make certain lifestyle choices, while Council of Europe guidance endorses protection measures for older people who lack decision-making capacity. By contrast, the Inter-American Convention on Protecting the Human Rights of Older Persons replicates the more expansive legal capacity protections grounded in the CRPD, which endorses supported decision-making and challenges the continued use of protection measures.
Fragmentation is evident even within single countries, with sub-national jurisdictions adopting varied and at times conflicting approaches to preserving and restricting older people from exercising their legal capacity. The United States is a prime example, where approaches to regulating older persons’ legal capacity often are misaligned with other mechanisms within the same state. In some places, for example, individuals are allowed to enter into various legal arrangements to address present or future decision-making challenges to their legal capacity, using tools such as powers of attorney or advance directives for health care, as well as supported decision-making agreements, even if these various instruments contradict one another. Exacerbating these potential conflicts, no U.S. state has created a single instrument that would allow for different arrangements to take effect at times according to an individual’s wishes and needs, or in the case of dementia, based on an individual’s prognosis and disease trajectory.
To aid treaty negotiators confronting the twin realities of age-related cognitive decline and fragmented legal systems, they should be mindful of two potential pitfalls. The first is creating self-limiting dichotomies. Much of the controversy surrounding the CRPD’s approach to legal capacity stems from binary interpretations that seek to sort varied legal arrangements into one of two categories: either permissible forms of supported decision-making or prohibited forms of substitute decision-making. While high-level binary theoretical frameworks may illuminate the downsides of disfavored measures, they may also stymie innovation and pragmatism. Thus, treaty negotiators should be mindful of recognizing the rights of older people to exercise legal capacity in ways that encourage countries to craft solutions based on context rather than obey rigid dogmas.
The second pitfall in dealing with issues of cognitive decline in fragmented legal systems is the failure to connect different legal arrangements recognized in different statutes. Thoughtfully designed systems that allow individuals to choose among various legal arrangements with relative ease are more likely to advance older persons’ decision-making rights generally, while also honoring the varying preferences of diverse individuals. However, an excessive proliferation of possibilities adopted through incremental reforms can cause not only decision fatigue but also confusion among individuals, their supporters, and third parties. Thus, treaty negotiators should also be cognizant of the need for national governments to establish and maintain clear, comprehensive, and internally consistent regimes that alleviate rather than add to the inherent challenges posed by age-related changes in decision-making ability.
Disavowing Dichotomies
The CRPD will inevitably influence the nascent negotiations on the treaty for older people, particularly the interpretation of CRPD Article 12 advanced by the Committee on the Rights of Persons with Disabilities (CRPD Committee) since the CRPD’s adoption in 2006. In its first general comment, issued in 2014, the committee drew a sharp distinction between supported decision-making, which promises persons with disabilities decision-making assistance without rights restrictions, and substitute decision-making, which removes decision-making rights in the name of protections against harm to oneself or others. The CRPD Committee has used this distinction to urge CRPD States Parties to “abolish” plenary guardianship, which restricts all or nearly all an adult’s decision-making authority, and replace it with non-restrictive measures that respect individual will and preferences at all times.
The committee deserves praise for its sensitivity to the lurid history of human rights violations that have been facilitated by draconian capacity restrictions in law. However, the rigid dichotomy adopted in its first general comment throws doubt on the continued use of many “advance planning mechanisms.” Tools such as “springing” powers of attorney or advance directives for health care allow individuals to voluntarily and anticipatorily transfer, or “delegate,” decision-making authority to trusted agents should they no longer be able to make or communicate certain decisions independently. As such, they can empower people to shape future decisions about their lives for when they might face extreme difficulty doing so themselves. At the same time, depending on the scope of individually chosen or legally mandated guardrails, in many cases duly appointed agents wield broad authority to make impactful decisions on behalf of their principals in ways that may approximate or resemble substitute decision-making.
Because delegation tools can be used to voluntarily appoint substitute decision-makers, it is unclear how they should be categorized within the CRPD Committee’s dichotomous scheme. On the one hand, the tools differ from supported decision-making because the agent is empowered, at least in certain circumstances, to decide on the principal’s behalf, not merely to assist them to decide. But they also differ in important respects from plenary guardianship regimes that most concern the CRPD Committee. They are generally voluntary: adults choose whether to execute them, which agent to appoint, the scope and duration of the authority granted, and sometimes the trigger for its activation. They also may reserve to the person the power to revoke or modify the delegation, even after some authority has shifted. Moreover, many individuals — particularly older persons anticipating dementia or other age-related cognitive changes — may experience these instruments as an expression of autonomy and foresight, not as an externally imposed loss of rights.
If these forms of delegated decision-making were swept into the same category as coercive substitute decision-making and abolished, the consequences would be significant. Older adults (with or without disabilities) would lose familiar, less restrictive alternatives to guardianship that allow them to project current values and preferences into an anticipated future in which they may struggle to understand complex information, remember prior choices, or communicate reliably. For many, the ability to choose in advance who will act for them, and under what conditions, is central to how they would prefer to express their personal autonomy and uphold their dignity later in life.
Rather than treating all transfers of decision-making authority as inherently suspect, a new treaty on the rights of older persons can add nuance to the international framework by greenlighting not just supported decision-making but also forms of “delegated decision-making.” For example, treaty text could affirm that eventual States Parties must ensure access to the “support” older persons require to exercise legal capacity, “including, where consistent with their will and preferences, by means of delegation.” Alternatively, negotiators may seek to clarify that delegation is distinct from supported decision-making but nevertheless permissible, while also proscribing harmful forms of substitute decision-making. Accompanying commentary could clarify that delegation instruments are permissible when they adhere to specific criteria, such as being voluntary, grounded in respect for the person’s current and past will and preferences, framed to maximize the person’s ongoing participation, and accompanied by safeguards against abuse.
Carefully framed recognition of delegated decision-making could help harmonize practice advanced by the CRPD. By addressing delegation directly, a treaty on the rights of older persons would help fill a gap left by the CRPD Committee’s first general comment, which unconvincingly styles all “advance planning mechanisms” as forms of decision-making supports even if they resemble prohibited forms of substitute decision-making. Treaty recognition of delegation may also serve to reduce fragmentation among regional human rights systems, given the already-evident divergent approaches to decision-making risks during cognitive decline. Thus, treaty negotiators could strengthen international law by creating space for a more complete vision of autonomy for older and younger persons alike — one that includes the freedom to plan for, and thoughtfully delegate in light of, foreseeable decline.
Crafting Cohesion and Coherence
In addition to promoting access to forms of delegated decision-making, negotiators should be mindful of the perils of proliferating legal arrangements. Specifically, incremental or piecemeal reforms that introduce or revise legal decision-making arrangements may generate inconsistencies, confusion, and conflicts. Different arrangements — ranging from restrictive guardianship orders and default surrogate designations to less restrictive alternatives such as advance directives for health care, powers of attorney, and supported decision-making agreements — serve different purposes, and their differences may not be readily apparent to non-specialists. For older adults with dementia, negotiators should be mindful of a need for greater coherence and cohesion among the varied arrangements available to address decision-making challenges.
The rules governing different decision-making arrangements typically are not designed to correspond to the known trajectories of dementia-related impairments. But many of the decision-making challenges that older adults with dementia encounter are increasingly predictable through greater societal awareness and advances in medical science. Capacity may fluctuate; domain-specific cognitive deficits may not trigger legal thresholds; family members may disagree about when a power of attorney should take effect or whether a supporter is overstepping; resources may dwindle; new risks of abuse or neglect may emerge. Yet, many regimes treat decisional capacity as a binary, static property, divorced from diagnosis, prognosis, and social environment. Such frameworks are ill-suited to the realities of aging-related dementias, which may cause cognitive capacities to change gradually, unevenly, or unpredictably. Instead, statutes generally lack mechanisms to prompt periodic reassessment, to structure transitions from less to more restrictive arrangements, or to require third-party monitoring for high-stakes changes such as selling a home or changing the identity of a decision-maker.
Further, rules governing different decision-making arrangements have been developed in isolation and at different times. As a result, statutory forms for various tools are typically separate and do not reference another. Individuals might inadvertently enter into conflicting arrangements if different tools are used at different stages of an individual’s life. By contrast, systematic attention to how different tools interact could promote greater cohesion among various available arrangements. In the United States, for example, the Uniform Law Commission has sought to promote greater cohesion across the patchwork of 50 sets of state statutes through model legislation that offers detailed rules about relationships between certain instruments, such as powers of attorney for health care generally versus mental health specifically. However, even this model is incomplete, as it offers little guidance on how certain other instruments, such as supported decision-making agreements, should be integrated with those tools or prioritized relative to default surrogates.
By contrast, no U.S. state offers a single, integrated instrument that allows an older person with a dementia diagnosis to map out a more comprehensive set of arrangements and contingencies: when and for what kinds of decisions they want to rely on support; when they wish authority to shift to an agent; how these arrangements relate to default surrogates; and how those allocations should evolve as the disease progresses. Moreover, standard fillable forms generally do not prompt individuals to specify that they are planning for specific dementia-related diagnoses with known trajectories, to identify particular domains where they expect to need help, or to signal how gradual decline or fluctuating capacity should affect the timing of a specific arrangement. This omission creates room for confusion and exploitation. For example, a broadly worded power of attorney executed after a diagnosis may raise concerns about undue influence. On the other hand, a pre-diagnosis instrument triggered by “inability to make decisions” may not map cleanly onto emerging impairments.
Negotiators should seek to craft the treaty text to encourage eventual States Parties to adopt more age-responsive and holistic approaches to addressing impairments that affect decision-making. For example, treaty text may expressly oblige States to develop holistic tools that enable individuals to combine or anticipate various kinds of legal arrangements that currently are set forth in separate supported decision-making agreements, powers of attorney, or advance directives. The text might also expressly oblige States to ensure advance planning mechanisms are responsive to age-related cognitive impairments, thereby incorporating advances in medical science about the likely trajectories of major neurocognitive disorders. Finally, the text could expressly call on States both to facilitate the ease with which older people combine and transition between mechanisms, and also to inform them of their options in appropriate, age-accessible formats. Although developed with dementia in mind, such structures could also inform decision-making regimes for other conditions in which capacity varies over time and content, aligning domestic law more closely with the nuanced, varied, and contextualized lived experiences of people young and old who undergo changes in their decision-making abilities.
Conclusion
The considerations we have discussed may complicate rather than simplify the inherent challenges that treaty negotiators will face, but it is imperative that negotiators shore up gaps in international laws in order to signal how States can adapt domestic legal systems to meet the human rights challenges posed by age-related cognitive impairments among rapidly aging populations. The task for treaty negotiators is twofold: to articulate clear, practical expectations that address age-related cognitive decline without abandoning hard-won disability rights protections, and to encourage States to re-examine how well their domestic laws respond to the everyday realities of older persons with dementia.
Resisting adherence to dogmatic, though well-intentioned, dichotomies will be essential for States to devise practical measures that recognize that autonomy in later life is often exercised relationally, over time, and through carefully chosen delegations. At the same time, we caution against layering new instruments onto already fragmented systems without more holistic reforms. If the promise of new international standards on older persons’ right to enjoy and exercise legal capacity is to be realized in practice, then negotiators should seek to agree upon treaty text that encourages States to develop practical, integrated processes that are sensitive to diagnosis and context and that better assist older persons and their loved ones to effectively make decisions as their capacities and circumstances change.
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(Authors’ note: This article draws from arguments more fully presented in our respective chapters of a forthcoming edited volume entitled “Law, Health Care, and the Aging Brain and Body,” to be published by Cambridge University Press in 2027.)
