Cognitive impairment and the continuing exercise of human rights by older persons

The universality of human rights is affirmed not only by recognizing rights in principle, but also by ensuring that they can continue to be exercised meaningfully throughout the changing circumstances of life. International human rights law affirms the equal dignity and equal rights of every human being. A true challenge remains, however, in ensuring that those rights remain fully enjoyed when changes in health, functioning or personal circumstances affect the ways in which older people communicate, participate in decisions and exercise their rights. Human rights do not become less universal when their exercise becomes more difficult. Rather, it is precisely in such circumstances that their universality is most profoundly tested.

For older persons living with cognitive impairment, this challenge has become increasingly significant. As populations age, growing numbers of older persons experience changes in memory, communication, orientation, judgment and other cognitive abilities that may affect how they express their wishes, maintain relationships, participate in family and community life, and make decisions about matters that shape their everyday lives. Too often, these changes are interpreted primarily through assumptions of incapacity, dependence on support or diminished personhood. Older persons may find themselves spoken for rather than listened to, excluded from decisions affecting their lives, or gradually displaced from positions of social visibility, participation and recognition. Yet changes in cognition neither diminish personhood nor extinguish human agency. Nor do they erase identity, relationships, values or entitlement to the full enjoyment of human rights. The principal human rights challenge therefore lies not in cognitive impairment itself, but in the ways that individuals, institutions and societies respond to it.

The evolution of international human rights law invites a different understanding of the relationship between cognitive impairment, human agency and the exercise of the human rights of older persons. Over recent decades, international and regional human rights instruments, treaty bodies and other human rights mechanisms have increasingly affirmed equality, participation, accessibility, support and equal recognition before the law as essential conditions for the effective enjoyment of rights. These developments are particularly significant for older persons, whose experiences often lie at the intersection of ageing, disability, health and long-term care. At the same time, the relevant normative principles remain dispersed across multiple international instruments and have rarely been interpreted together through the specific experiences of older persons living with cognitive impairment. The extensive consultations undertaken for the present report revealed a remarkable convergence around this evolving understanding. Across the contributions received from States, United Nations entities, national human rights institutions, civil society organizations, academics, health and care professionals, caregivers and older persons themselves, a common theme emerged: cognitive impairment should not be understood as diminishing personhood or entitlement to human rights, but as requiring renewed attention to the conditions under which those rights can continue to be exercised.

Against this background, in the present report, the Independent Expert proposes an interpretative framework for understanding the relationship between cognitive impairment, human agency and the exercise of the human rights of older persons. He argues that cognitive impairment does not diminish personhood, human agency or entitlement to human rights. Rather, it changes the ways in which older persons exercise those rights and, consequently, the responsibilities of States and societies to create the conditions in which older persons can continue to exercise those rights meaningfully. Building upon existing international human rights law, in the report he examines how the principles of dignity, equality, autonomy, participation and non-discrimination should be interpreted and applied when older persons experience cognitive impairment and increasing needs for support.

In the report, the Independent Expert places the continuing human agency of older persons at the centre of the analysis. He argues that autonomy, participation and dignity are not qualities that disappear as cognition changes, but human rights principles whose practical realization increasingly depends upon communication, supportive relationships, inclusive environments and rights-realizing systems. Drawing upon international human rights law and the broad convergence emerging from the consultation process, he develops an interpretative framework through which law, policy, professional practice and community life can better recognize, support and enable the continuing exercise of the human rights of older persons living with cognitive impairment.

Ultimately, in the present report, the Independent Expert argues that the continuing exercise of the human rights of older persons living with cognitive impairment is not simply a question of health, ageing or care. It is a measure of the universality of human rights themselves. The protection of those rights therefore requires more than the recognition of rights in principle. It requires the creation of the legal, institutional and social conditions in which older persons can continue to exercise their rights meaningfully throughout the changing circumstances of life.

International human rights law provides a substantial normative framework governing autonomy, participation, legal agency, dignity and social inclusion in older age. This framework is particularly relevant to older persons with cognitive impairment, as it rejects assumptions that diminished or fluctuating cognitive functioning extinguishes personhood, equal legal status or entitlement to participate in decisions affecting one’s own life.

The principle that all human beings possess inherent dignity regardless of age, disability or cognitive status is a foundational norm of international human rights law. The Universal Declaration of Human Rights provides that “all human beings are born free and equal in dignity and rights” (art. 1). Similarly, both the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights affirm that the rights recognized in those treaties derive from “the inherent dignity of the human person” (preamble).

Age discrimination is prohibited under the framework of the twin Covenants. The Committee on Economic, Social and Cultural Rights, in its general comment No. 20 (2009), clarified that, while age is not expressly listed in article 2 (2) of the International Covenant on Economic, Social and Cultural Rights, it constitutes a prohibited ground of discrimination and States Parties must address barriers facing older persons (paras. 28 and 29). The Committee also stressed, in its general comment No. 6 (1995), that older persons should be able to lead lives characterized by dignity, independence and participation, and that discrimination against older persons is incompatible with Covenant obligations (paras. 5 and 32–35).

Where cognitive impairment falls within the scope of disability, the Convention on the Rights of Persons with Disabilities provides additional protections. Article 5 (1)–(3) guarantees equality before and under the law and equal protection against discrimination, while article 8 (1) (b) requires States Parties to combat stereotypes, prejudices and harmful practices relating to persons with disabilities.

Taken together, these standards affirm that neither age nor cognitive impairment can justify diminished recognition of personhood, legal status or equal human worth. Applied to older persons living with cognitive impairment, the principles of dignity, equality and non-discrimination require that changes in cognitive functioning never become a basis for diminishing the recognition, exercise or enjoyment of human rights.

When older persons experience treatment leading to social invisibility, assumptions of incompetence, exclusion from meaningful participation, and/or infantilization, legal rights and the responsibility of States are therefore engaged in these regards. Such practices are not merely inconsistent with good clinical or social care; they engage fundamental obligations under international human rights law to respect, protect and fulfil the equal rights of older persons without discrimination.

The right to be recognized as a person before the law is guaranteed in article 16 of the International Covenant on Civil and Political Rights and, pursuant to article 4 (2) of the Covenant, is non-derogable. The Human Rights Committee underscored, in its general comment No. 29 (2001), the non-derogable character of article 16, which therefore requires that States respect and ensure the legal personality of every individual under all circumstances, without exception (para. 7).

The Convention on the Rights of Persons with Disabilities develops this principle further. Article 12 (2) provides that States Parties must recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life, while article 12 (3) obliges States Parties to provide access to the support that persons with disabilities may require in exercising their legal capacity.

In its general comment No. 1 (2014), the Committee on the Rights of Persons with Disabilities expressly rejected the conflation of mental capacity and legal capacity, stating that “perceived or actual deficits in mental capacity must not be used as justification for denying legal capacity” (para. 13). The Committee further stated that substitute decision-making regimes are incompatible with article 12 where they remove legal capacity and replace a person’s own will and preferences with decisions based on what is believed to be in the person’s objective “best interests” (paras. 26–29). Instead, States should develop supported decision-making arrangements that respect the person’s rights, will and preferences (paras. 17–21).

These standards reflect a broader evolution in international human rights law. Rather than treating cognitive impairment as a justification for replacing the person’s own decision-making, they increasingly require support that enables individuals to continue exercising their rights to the greatest extent possible. The emphasis therefore shifts from determining whether a person retains sufficient capacity to exercise rights independently towards ensuring that those rights may be meaningfully exercised through appropriate support.

These standards are particularly relevant to older persons with dementia and other cognitive impairments, whose legal agency is frequently restricted through the imposition of guardianship, involuntary interventions or informal family decision-making practices. For older persons, this evolution has implications extending beyond legal capacity itself. It affirms a broader principle that support should enable, rather than replace, the continuing exercise of human agency and human rights.

International human rights law increasingly conceptualizes autonomy not as an all-or-nothing capacity, but rather as a right that may require support, accommodation and recognition of fluctuating forms of decision-making.

Article 3 (a) of the Convention on the Rights of Persons with Disabilities identifies respect for individual autonomy, including the freedom to make one’s own choices, as a general principle of the Convention. Article 12 requires State Parties to provide access by persons with disabilities to the support they may require in exercising their legal capacity, while article 21 obliges States Parties to facilitate communication through all forms chosen by persons with disabilities.

The Committee on the Rights of Persons with Disabilities has repeatedly emphasized, including in its general comment No. 1 (2014), that support measures should enable persons to communicate and realize their will and preferences, including through trusted support persons, advance planning, communication assistance and other forms of support (paras. 17, 18 and 29).

Importantly, the Committee explained in the same general comment that where, after significant efforts have been made, it is not practicable to determine a person’s will and preferences, decision-making processes should be guided by the “best interpretation of will and preferences” rather than assessments of presumed “best interests” (para. 21).

Together, these developments represent a significant shift in the interpretation of international human rights law. Rather than focusing primarily on deficits in decision-making capacity, they place increasing emphasis on understanding, supporting and giving effect to the person’s own will, preferences and values. Support is therefore understood not as an exception to autonomy, but as one of the principal means through which autonomy and other human rights may continue to be exercised.

Participation is separately protected by broader human rights guarantees. Article 25 of the International Covenant on Civil and Political Rights protects participation in public affairs; article 15 of the International Covenant on Economic, Social and Cultural Rights protects participation in cultural life; and article 19 of the Convention on the Rights of Persons with Disabilities guarantees the opportunity to choose one’s place of residence and with whom one lives, on an equal basis with others.

Together, these standards support the proposition that older persons with cognitive impairment retain the right to participate in decisions affecting everyday life, relationships, care arrangements and community engagement, even where support is required. Applied to older persons living with cognitive impairment, participation should therefore be understood not merely as an outcome of good care or social inclusion, but also as an essential component of the continuing exercise of human rights.

The aforementioned human rights protections of supported autonomy and participation are important underpinnings of social inclusion, relationships, recognition of personhood and affirmation of one’s identity.

Additionally, article 17 (1) of the International Covenant on Civil and Political Rights protects individuals against arbitrary or unlawful interference with their privacy, family and home, while article 23 (1) recognizes the family as the natural and fundamental group unit of society. In its general comment No. 16 (1998), the Human Rights Committee interpreted article 17 broadly to protect personal identity and aspects of individual autonomy (paras. 3 and 4).

Similarly, article 22 of the Convention on the Rights of Persons with Disabilities protects privacy, article 23 safeguards family life and personal relationships, and article 30 guarantees the right to participate in cultural life, recreation, leisure and sport.

In its general comment No. 5 (2017), the Committee on the Rights of Persons with Disabilities stressed that institutionalization and segregation frequently undermine social inclusion and participation in family and community life (paras. 16–23). The Committee explained that inclusion requires not only physical presence in the community, but also opportunities to develop and maintain relationships, exercise choice and participate meaningfully in everyday life (paras. 11 and 16).

Taken together, these standards recognize that human rights protect not only the individual in isolation, but also the relationships, social roles and sense of belonging through which personhood is lived and expressed. For older persons living with cognitive impairment, identity and personhood are therefore sustained both through individual decision-making and through continuing relationships, participation in community life and recognition by others.

These standards are directly relevant to the experiences of social erasure, loss of social roles and diminished expectations frequently reported by older persons with cognitive impairment. They also reinforce a central proposition of the present report: cognitive impairment may change the ways in which personhood and human agency are expressed, but it does not nullify human rights or the corresponding obligations of States.

Article 12 of the International Covenant on Economic, Social and Cultural Rights recognizes the right to the highest attainable standard of physical and mental health. The Committee on Economic, Social and Cultural Rights, in its general comment No. 14 (2000), clarified that health services must be accessible, acceptable and respectful of medical ethics, including respect for autonomy and informed consent (paras. 8, 12 (c), 34 and 50).

For persons with disabilities, article 25 (d) of the Convention on the Rights of Persons with Disabilities expressly requires health professionals to provide care on the basis of free and informed consent. The Committee on the Rights of Persons with Disabilities, in its general comment No. 1 (2014), interpreted this provision in conjunction with article 12 and emphasized that denial of legal capacity should never be used to justify the withdrawal of decision-making authority from the individual concerned (paras. 41 and 42).

In its guidelines on article 14 of the Convention,¹ the Committee also expressed concern regarding practices that rely on substituted consent and involuntary interventions in the context of psychosocial and cognitive disabilities, emphasizing the need to respect the individual’s will and preferences (paras. 8, 10, 11, 15, 22 and 23).

1. A/72/55, annex. ↩

Together, these standards recognize that health and care are not solely matters of clinical practice, but also settings in which fundamental human rights must be respected, protected and fulfilled. They require health and care systems to support, rather than replace, the continuing exercise of autonomy, participation and human agency, including where cognitive impairment affects communication or decision-making.

These standards support an approach to care for persons living with dementia and other forms of cognitive impairment that prioritizes communication support, advance planning, supported decision-making and respect for remaining decision-making abilities. They also establish the normative foundations for rights-realizing health and long-term care systems capable of supporting the continuing exercise of human rights by older persons living with cognitive impairment.

In the United Nations Principles for Older Persons, the General Assembly affirmed that older persons should remain integrated in society, participate actively in the formulation and implementation of policies that directly affect their well-being, take part in decisions concerning their care, and be able to live in dignity and be treated fairly regardless of age, disability or their needs for care and support (principles 7, 11, 12, 14, 17 and 18).

Legal and social systems frequently deprive older persons of autonomy owing to paternalistic approaches that presume incapacity, necessitating States’ greater recognition of and support for supported decision-making and self-determination in older age.²

2. A/HRC/51/27, paras. 33–37 and 62–68. ↩

The cumulative effect of these standards is clear: older persons with cognitive impairment remain rights holders entitled to equal recognition before the law, respect for dignity and personhood, support in expressing their will and preferences, participation in decisions affecting their lives, and protection from ageist or disability-based assumptions that equate cognitive impairment with loss of autonomy or human worth.

The sections that follow build upon this growing body of international human rights law. They examine how personhood, human agency, autonomy, communication, participation and rights-realizing systems together provide a coherent framework for understanding and protecting the human rights of older persons living with cognitive impairment. 1 A/72/55, annex. 2 A/HRC/51/27, paras. 33–37 and 62–68. GE.26-10991

Cognitive impairment may involve significant changes in memory, orientation, language, judgment, executive functioning and other cognitive abilities. As these changes progress, many older persons may require increasing support in managing aspects of everyday life, including the support of family members, professionals or the wider community. Such changes are part of the lived reality of many older persons and often have profound consequences for individuals, families and communities. Recognizing cognitive decline and the increasing need for care and support that many older persons experience is neither incompatible with a human rights-based approach nor inherently discriminatory. On the contrary, acknowledging these realities is often the first step towards ensuring that older persons continue to exercise their human rights throughout changing circumstances.

The human rights challenge does not arise from the existence of cognitive impairment, dependency or vulnerability themselves. These are human conditions that may accompany ageing, illness or disability and should neither be denied nor regarded as incompatible with dignity or equal rights. Rather, the human rights challenge arises from the social, legal and institutional meanings attached to these conditions and from the responses they may provoke. Recognition is the condition that enables human rights to be exercised in practice. When older persons are no longer recognized as persons whose voices, values and relationships continue to matter, the exercise of human rights is progressively undermined, regardless of whether those rights remain formally guaranteed.

Difficulties arise when cognitive impairment is interpreted as implying diminished personhood or reduced social value, or when it is used to justify the premature replacement of the older person’s own agency by the decisions of others. Human rights therefore require not the denial of impairment and needs for care and support, but the transformation of the responses to them, so that older persons can continue to be recognized as persons, supported in exercising their agency, and enabled to enjoy all human rights on an equal basis with others.

There is growing international recognition that cognitive impairment should not be understood as a progressive loss of personhood or as sufficient justification for excluding older persons from decisions affecting their own lives. Older persons with cognitive impairment remain persons with equal dignity and equal rights, whose human agency continues to find expression, even though the ways in which they communicate, participate, express preferences and influence decisions may change over time. Personhood does not depend upon memory, productivity, independence or cognitive performance. Likewise, human agency should not be understood solely as the capacity to make complex, independent decisions. It is also expressed through relationships, emotions, values, long-standing preferences, behaviour, everyday choices and many other forms of communication. This understanding emerged consistently across the contributions received from States, national human rights institutions, United Nations entities, civil society organizations, academics, healthcare professionals, caregivers and persons with lived experience.

Recognizing continuing personhood and human agency does not require denying the reality of cognitive impairment or the increasing need for support that many older persons experience. Rather, it requires ensuring that older persons continue to exercise their rights freely through appropriate recognition, support and participation. Whether in societies, institutions or relationships, older persons must be allowed and enabled to exercise their rights as cognition changes. This requires moving beyond approaches that respond primarily by replacing the person’s own voice with decisions made by others, towards approaches that seek first to recognize, interpret and support the person’s own will, preferences, values and forms of expression.

The full exercise of human rights should therefore be understood not as dependent upon unchanged cognitive abilities, but as supported through relationships, communication, participation and rights-enabling environments that enable older persons to remain active subjects of their own lives.

Autonomy occupies a central place in contemporary human rights law, bioethics and healthcare. It is often understood as the capacity of individuals to make independent choices, free from coercion or undue influence, and to determine the course of their own lives. This understanding has made an essential contribution to the protection of human dignity by rejecting paternalism and affirming the right of every person to participate in decisions affecting their lives.

However, autonomy has frequently been conflated with independence, thereby overlooking the ways in which autonomy continues to be exercised through relationships, communication and appropriate support. Yet increasing needs for support do not represent a progressive loss of autonomy.

Across diverse legal systems and care settings, a common theme has emerged: autonomy should not be understood primarily as the absence of dependence or support, but as the continuing ability of the person to shape their own life, express their will and preferences, and participate in decisions affecting them, with whatever support may be necessary. The purpose of support is not to substitute the person’s autonomy, but to create the conditions in which autonomy can continue to be exercised.

The understanding of autonomy developed in the present report is grounded in a broader understanding of the human condition. Human beings do not experience autonomy only in situations of complete independence. Throughout the life course, autonomy is exercised within relationships of mutual support, care and interdependence. Childhood, illness, disability, recovery, frailty and older age all illustrate that the need for support is neither exceptional nor incompatible with living a self-directed life. Dependence and vulnerability are therefore not conditions that place a person outside the protection of human rights; they are part of the ordinary human experience to which human rights must continually respond. Human rights are universal precisely because they respond to the changing realities of the human condition throughout the life course and the changing realities of the human condition.

This perspective has particular significance in the context of cognitive impairment. As cognition changes, older persons may increasingly rely on others to communicate, interpret information, organize daily life or participate in decisions. Such support should not be understood as evidence that autonomy has disappeared. Rather, it reflects the responsibility of families, professionals, communities and public institutions to create the conditions in which the person’s own will, preferences, values and relationships continue to shape the course of their life. Human rights do not require freedom from dependence. They require that dependence never becomes a justification for diminished recognition, reduced participation or unequal enjoyment of human rights.

This understanding of autonomy is increasingly reflected in contemporary human rights scholarship, disability studies and ethics through the concept of relational autonomy. Rather than viewing autonomy as the achievement of a wholly independent individual, relational autonomy recognizes that people exercise choice, develop identities and pursue their lives within relationships of mutual support and responsibility. Human agency is shaped not only by individual capacities, but also by the quality of relationships, communication, social environments and the opportunities available for participation. Although the term “relational autonomy” is not itself used in international human rights instruments, it provides a useful conceptual framework for understanding the evolving interpretation of autonomy reflected in contemporary international human rights law.

For older persons with cognitive impairment, relational autonomy recognizes that support need not diminish self-determination. On the contrary, supportive relationships can enable the person to understand information, express preferences, communicate values and participate in decisions that would otherwise become inaccessible. The role of family members, trusted supporters, professionals and communities is therefore not to replace autonomy, but to create the conditions in which autonomy can continue to be exercised in ways that remain faithful to the person’s own life, values and aspirations.

The contributions received from all stakeholder groups converged on this understanding. Across different legal systems, cultural traditions and care settings, contributors emphasized that autonomy is sustained not by isolation from others, but by relationships that recognize, interpret and support the person’s own agency while respecting their dignity, rights and individuality.

Support should not be understood as an alternative to autonomy but as one of the principal means through which autonomy may continue to be realized and exercised when cognition changes. The purpose of support is neither to take decisions on behalf of the person nor to shield them from all risks, but to enable them to continue shaping their own life to the greatest extent possible. Appropriate support seeks to understand the person’s will, preferences, values and aspirations, to facilitate their expression, and to create opportunities for their continued participation in decisions affecting everyday life.

Supported autonomy therefore requires more than assistance with isolated decisions. It requires relationships, practices and environments that enable older persons to remain active participants in the ordinary course of their lives. This may include adapting communication, allowing sufficient time for decision-making, identifying the circumstances in which the person expresses themselves most effectively, drawing upon long-standing values and life experience, and involving trusted supporters where appropriate. The objective is not to compensate for an assumed absence of autonomy, but to enable the person to continue exercising autonomy in forms that remain meaningful within the reality of cognitive change.

Autonomy should also be understood as dynamic rather than static, meaning that the exercise of rights should correspond to the realities of people’s lives rather than to fixed assumptions about their abilities.

The ways in which older persons exercise autonomy may change over time, vary according to the nature of a particular decision, and be influenced by health, emotional well-being, communication, relationships and the surrounding environment. Cognitive impairment should therefore not be understood as a fixed state that inevitably determines a person’s ability to participate in decisions affecting their life. Nor should autonomy be regarded as something that is either wholly present or wholly absent.

Recognizing the dynamic nature of autonomy has important implications for the protection of human rights. Rather than relying on fixed assumptions about what a person can or cannot do, families, professionals and institutions should seek to create the conditions in which autonomy can be exercised to the greatest extent possible at each stage of the person’s life. This requires flexible approaches that adapt to changing circumstances, support communication, respect established values and preferences and recognize that the forms through which autonomy is expressed may change without diminishing the person’s equal dignity, rights or human agency. The task is therefore not to determine once and for all whether a person possesses autonomy, but continually to enable its exercise as circumstances evolve.

The evolution from substitute to supported decision-making should be understood as one of the practical consequences of this broader understanding of autonomy. International human rights law increasingly recognizes that the need for support should not, in itself, justify the removal of a person’s agency or the automatic transfer of decision-making to others. Instead, the objective should be to provide the assistance necessary for older persons to understand information, communicate their wishes, consider available options and participate, to the greatest extent possible, in decisions affecting their own lives.

Supported decision-making is therefore not simply a legal mechanism but a human rights practice. Its purpose is not merely to protect legal capacity, but also to enable the continuing exercise of human agency and the practical enjoyment of human rights. Its effectiveness depends both on legislation and on the quality of relationships, communication, professional skills and institutional culture. Across the contributions received, numerous examples illustrated that support may involve adapting communication, allowing sufficient time, involving trusted persons chosen by the older person, respecting previously expressed values and preferences and creating environments in which the person’s own voice can continue to guide decisions. The purpose of support is not to replace judgment but to maximize the person’s continuing participation in decisions affecting their life.

Recognizing autonomy through support does not imply that every person will always be able to make every decision independently or without assistance. Cognitive impairment may progressively affect the ability to understand, retain, use or communicate information relating to particular decisions, and situations may arise in which additional safeguards become necessary to protect the person’s rights and well-being. A human rights-based approach neither denies these realities nor accepts them as justification for the automatic substitution of the person’s own agency.

The exercise of autonomy should therefore be understood as a continuing process rather than a single assessment or legal determination. Whenever additional support or protective measures become necessary, every reasonable effort should first be made to ascertain and give effect to the person’s own will, preferences, values and life history. Any limitation upon the exercise of autonomy should remain exceptional, lawful, proportionate, individualized and subject to regular review. The objective is not to determine the moment at which autonomy is lost, but to preserve and enable its exercise for as long as possible and to the greatest extent possible.

The analysis presented in this section points to a clear conclusion: autonomy is not an attribute that individuals either possess or lose once and for all. It is exercised through relationships, communication, participation and support that evolve throughout the life course. Cognitive impairment does not create this reality; it makes visible a fundamental feature of the human condition – that autonomy has always been relational, dynamic and, at times, dependent upon the support of others. States and those supporting older persons must therefore shift from asking whether older persons remain autonomous to asking how autonomy can continue to be exercised throughout the course of cognitive change.

This shift represents more than a change in legal doctrine or care practice. It represents a broader evolution in the interpretation of autonomy within international human rights law, placing the continuing exercise of human rights at its centre. It calls for a broader transformation in the way societies understand autonomy itself. The measure of a rights-based approach is not the absence of dependency or support, but the extent to which older persons remain able to influence the course of their own lives, express what matters to them and participate meaningfully in decisions affecting them. Such participation depends fundamentally upon communication. The following section therefore examines communication not merely as the exchange of information, but as the principal means through which human agency continues to be expressed, recognized and translated into the practical exercise of human rights.

Human agency is expressed in many ways and cannot be reduced to the ability to make formal decisions or communicate through conventional language. Respecting, protecting and ensuring older persons’ human rights requires the recognition of these diverse forms of human agency. Older persons with cognitive impairment may continue to express what matters to them through words, gestures, emotions, behaviour, routines, relationships, refusals, silence, creativity and responses to familiar people, places and activities. These forms of expression may become less direct or require greater time and attention to understand, but they should not be treated as meaningless or as evidence that the person no longer has preferences, intentions or a sense of self.

A human rights-based approach therefore requires attention not only to whether a person can communicate in expected ways, but also to how human agency is expressed under changing circumstances. The responsibilities of families, professionals and institutions are not merely to receive information, but to recognize, interpret and support the person’s expressions without replacing them with assumptions about what others consider to be in their best interests. This requires respect for the person’s history, relationships, cultural and linguistic background, established values and patterns of everyday life. Cognitive impairment may change the forms through which human agency becomes visible, yet it does not diminish the person’s equal dignity, rights or human agency.

Recognizing human agency requires more than hearing words. It requires the willingness and ability to understand the diverse ways in which older persons continue to express themselves despite cognitive change. When cognitive impairment alters speech, memory or comprehension, the challenge is not only to overcome communication difficulties, but also to ensure that the person’s wishes, emotions, values and intentions continue to be recognized and taken seriously. A human rights-based approach therefore requires communication to be understood as a reciprocal process of listening, interpreting and responding, rather than as a test of cognitive ability. Communication is therefore not merely the exchange of information. It is the principal means through which human agency becomes visible and through which the continuing exercise of human rights is made possible.

This places corresponding responsibilities on families, professionals, caregivers and institutions. Effective communication requires patience, appropriate support, adaptation of language and pace, familiarity with the person’s life history, and sensitivity to cultural and linguistic diversity. It also requires avoiding assumptions that communication difficulties necessarily reflect an absence of understanding or preference. The evidence gathered in the contributions received shows that communication often fails not only because cognition changes, but also because others fail to listen, adapt or recognize the diverse ways in which older persons continue to express themselves. Supporting communication is therefore not simply good clinical or social practice; it is a prerequisite for the effective enjoyment of autonomy, participation, expression of agency and other human rights.

Participation is one of the principal ways in which human agency is translated into the everyday exercise of human rights. Participation is therefore not simply an outcome of inclusion, but one of the ways in which equal recognition as a rights holder is realized in everyday life. For older persons living with cognitive impairment, participation should not be understood only in relation to major legal, financial or medical decisions, but also through the ordinary choices, relationships and activities that give meaning to everyday life. Deciding what to wear, what to eat, whom to spend time with, whether to take part in cultural, religious or recreational activities or how to organize daily routines are not merely personal preferences; they are everyday expressions of autonomy, identity and equal citizenship.

A human rights-based approach therefore requires that opportunities for meaningful participation be preserved and supported throughout the course of cognitive change. Participation should be enabled in ways that reflect the person’s own values, life history, interests and aspirations, rather than being limited by assumptions about age, diagnosis or perceived incapacity. Numerous contributions received highlighted that exclusion often arises not because older persons are unable to participate, but because environments, routines and professional or social attitudes fail to create opportunities for their continued involvement. Protecting the right to participate therefore means enabling older persons to remain active contributors to family, community and social life through the ordinary experiences that sustain purpose, identity and human agency.

Meaningful participation enables older persons not only to remain active in everyday life, but also to continue belonging to the families, communities and societies of which they are part. Belonging reflects the experience of continuing to be recognized, valued and included as a person whose life, relationships and contributions retain meaning despite cognitive change. It affirms that identity is not defined solely by cognitive abilities, productivity or independence, but also is shaped by enduring relationships, shared histories, cultural traditions and the continued recognition of the person by others.

A common theme emerging from the contributions received was that cognitive impairment often leads to social withdrawal, isolation and the gradual erosion of established social roles, not only because cognition changes but because families, communities and institutions lower their expectations or fail to create opportunities for continued inclusion. Human rights therefore require more than protection from discrimination or neglect. They require positive efforts to ensure that older persons continue to belong – to their families, neighbourhoods, workplaces where appropriate, faith communities, cultural life and wider society. Belonging is not merely a social aspiration; it is a condition that enables older persons to maintain their identity, exercise their human agency and continue enjoying their rights as equal members of society.

The recognition of human agency is ultimately realized through everyday practice. It is reflected in the ways families, professionals, caregivers, institutions and communities respond to older persons living with cognitive impairment: whether they listen before deciding, allow sufficient time for communication, adapt support to individual circumstances, respect established values and preferences, and continue to involve the person in decisions and relationships that shape everyday life. These practices do not simply improve the quality of care; they determine whether older persons continue to experience themselves, and are treated by others, as active subjects of rights rather than passive recipients of care.

A human rights-based approach therefore requires a transformation not only of laws and policies, but also of everyday attitudes and professional cultures. Recognition is expressed through ordinary acts of respect, inclusion and responsiveness that affirm the person’s continuing place in family and community life. Taken together, the contributions received suggest that the greatest barriers to the enjoyment of rights are often not the consequences of cognitive impairment itself, but the assumptions, routines and institutional practices that overlook or replace the person’s own voice. Human rights are therefore realized not only through legal guarantees, but also through everyday relationships that recognize, support and enable the continuing exercise of human agency.

The analysis presented in this section underscores that the continuing exercise of human rights by older persons living with cognitive impairment depends not only on legal recognition, but also on the conditions through which human agency is expressed, recognized and supported in everyday life. The expression of human agency is therefore not simply an individual characteristic. It is the point at which recognition, communication, participation and human rights converge in everyday life. Communication, participation and belonging are not simply desirable features of good care or social inclusion; they are essential conditions for the effective enjoyment of autonomy, dignity and equal rights.

Creating these conditions cannot depend solely upon the commitment of individual families, caregivers or professionals. It requires rights-realizing systems that translate these principles into laws, policies, institutions, services and communities, enabling older persons to continue exercising their human rights throughout changing circumstances.

The analysis developed in the preceding sections has affirmed that older persons living with cognitive impairment remain holders of equal rights whose human agency continues to be expressed, recognized and exercised despite changing cognitive abilities. The question for States is therefore not whether these rights continue to exist, but how they can be effectively realized in practice. International human rights law imposes both negative obligations to refrain from unjustified interference and positive obligations to create the conditions in which those rights can be effectively exercised. This requires more than the protection of individual rights in isolated situations. It requires rights-realizing systems that consistently support the continuing exercise of human rights throughout changing circumstances.

The thematic report that the Independent Expert submitted to the General Assembly at its eighty-first session highlights the importance of rights-realizing systems in situations of dependency in older age.³ The present report builds upon that analysis by examining how such systems should respond when cognitive change affects the ways in which older persons exercise their rights. Rights-realizing systems give institutional expression to universal human rights principles through laws, policies, institutions, professional practice and community environments that enable older persons to continue exercising their rights as equal members of society.

3. A/81/177. ↩

Rights-realizing systems are characterized not by the existence of specialized programmes or institutions, but by their capacity to embed human rights across all policies and services affecting older persons. By doing so, such systems recognize that autonomy, participation and dignity cannot be realized by isolated interventions or by a single sector acting alone. Instead, they require coordinated legal, health, social and community responses that recognize the person as a rights holder and place the continuing exercise of human rights at the centre of policy, professional practice and service delivery.

Such systems are person-centred, integrated and responsive to changing circumstances. They promote continuity rather than fragmentation, support rather than substitution, and participation rather than passive care. They are grounded in equality and non-discrimination, recognize the diversity of older persons’ experiences and identities, and seek to remove the structural, institutional and attitudinal barriers that prevent older persons living with cognitive impairment from exercising their rights on an equal basis with others. Their success should therefore be measured not only by the services they provide, but also by the extent to which older persons remain able to shape their own lives, maintain meaningful relationships and participate as equal members of society.

Rights-realizing systems should be guided by a number of interrelated human rights principles. They should recognize older persons living with cognitive impairment as holders of equal rights, respect their autonomy through appropriate support, promote meaningful participation in decisions affecting their lives, and ensure equality and non-discrimination in access to services and opportunities. They should also recognize the diversity of older persons’ experiences, identities, cultures and living arrangements, responding flexibly to changing circumstances rather than applying uniform or paternalistic approaches.

These principles require a shift in the way that institutions understand their role. The objective is not simply to deliver services efficiently or to manage cognitive impairment as a clinical condition; it is also to create the conditions in which older persons can continue exercising their human rights throughout the course of cognitive change. Rights-realizing systems should therefore be evaluated not only by health or social outcomes, but also by their ability to preserve autonomy, facilitate communication, enable participation, sustain belonging and uphold the person’s equal dignity and human agency.

Health and long-term care services are often the principal institutions through which older persons living with cognitive impairment encounter the State. As such, they should function not merely as providers of diagnosis, treatment and care, but also as integral components of rights-realizing systems. Their purpose extends beyond responding to disease to enabling the continuing exercise of human rights by supporting autonomy, facilitating communication, promoting meaningful participation and working in partnership with families, caregivers and communities. Clinical care and human rights protection should therefore be understood as complementary rather than competing objectives. Health and long-term care services fulfil not only clinical responsibilities, but also human rights responsibilities.

A rights-based approach requires that health and long-term care services be organized around the person rather than the disease. This includes timely access to assessment and treatment, continuity of care, rehabilitation, palliative care where appropriate, supported decision-making, accessible information, culturally appropriate communication and coordinated multidisciplinary support. It also requires that services move beyond institutional and crisis-oriented models towards community-based approaches that enable older persons to remain connected to their families, neighbourhoods and social networks for as long as possible. The effectiveness of health and long-term care systems should therefore be measured not only by clinical outcomes, but also by their ability to preserve autonomy, sustain relationships, promote participation and support the continuing exercise of human rights throughout the course of cognitive change. In this sense, health and long-term care are simultaneously systems of clinical support and institutions through which States give practical effect to their human rights obligations.

Rights-realizing systems extend beyond health and long-term care to encompass the wider social, legal and community environments in which older persons live. Housing, social protection, transport, justice, banking, digital technologies, public administration, education, cultural life and opportunities for social participation all influence whether older persons living with cognitive impairment are able to continue exercising their rights on an equal basis with others. A human rights-based approach therefore requires coordinated action across sectors to remove barriers, promote accessibility and ensure that public institutions respond to cognitive change without excluding the person from everyday life.

Communities play a particularly important role within rights-realizing systems. Dementia-inclusive and age-inclusive communities recognize that cognitive impairment should not lead to isolation or exclusion, but call for environments that support continued participation, familiar relationships and meaningful social roles. This includes accessible public spaces and services, opportunities for cultural, recreational and civic engagement, support for community organizations, and measures that reduce stigma and discrimination. Rights-realizing systems should therefore strengthen not only formal services, but also the social conditions that enable older persons to remain visible, valued and connected as equal members of their communities.

Rights-realizing systems require more than appropriate legislation or well-designed services. They depend upon effective governance, sustained political commitment and mechanisms that ensure accountability for the protection and fulfilment of human rights. States should therefore establish coordinated policies, allocate adequate resources, promote intersectoral cooperation and develop systems for monitoring implementation and evaluating outcomes. Such efforts should be informed by reliable data, research and evidence while respecting human rights, privacy and the dignity of older persons.

Implementation should also be participatory. Older persons, including those living with cognitive impairment, together with their families, representative organizations and caregivers, should be meaningfully involved in the development, implementation and evaluation of laws, policies and services that affect their lives. Professional education and continuing training across health, social care, justice and other public sectors should promote a human rights-based understanding of cognitive impairment, equipping professionals not only with technical knowledge, but also with the skills required to support autonomy, communication, participation and inclusion.

Rights-realizing systems ultimately depend upon institutions that recognize older persons not as passive recipients of services, but as equal holders of rights whose human agency continues throughout the course of cognitive change.

Rights-realizing systems provide the institutional framework through which this objective can be achieved. By recognizing human agency, supporting autonomy, enabling communication, promoting meaningful participation and fostering inclusion, they give practical effect to universal human rights and enable their continued exercise throughout the changing circumstances of life.

The analysis the Independent Expert has presented in this report demonstrates that cognitive impairment does not diminish personhood, human agency or entitlement to human rights. Rather, it changes the ways in which those rights are exercised and, consequently, the responsibilities of States and societies to create the conditions in which they can continue to be exercised meaningfully throughout changing circumstances. The central challenge is not to determine whether older persons living with cognitive impairment remain rights holders, but to create the conditions in which those rights can continue to be fully exercised throughout changing circumstances.

In the report, the Independent Expert also highlights a shift in the way cognitive impairment is understood within international human rights law. Rather than viewing cognitive impairment primarily through the lens of diminished capacity or increasing dependency, it places human agency at the centre of the analysis. Human agency persists throughout the course of cognitive change, although the ways in which it is expressed, recognized and exercised may evolve over time. This perspective does not diminish the importance of care, protection or support. Rather, it situates them within a human rights framework in which support serves to enable, rather than replace, the continuing exercise of autonomy and other human rights.

Accordingly, in the report the Independent Expert proposes that the central question for States, professionals and societies should no longer be whether older persons living with cognitive impairment remain capable of exercising their rights, but how legal, institutional and social conditions can be created in which those rights will continue to be exercised to the greatest extent possible. This shift – from determining capacity to enabling the continued exercise of human agency – provides a coherent framework for interpreting existing human rights norms in the context of cognitive impairment while remaining firmly grounded in the principles of dignity, equality, participation and non-discrimination.

The analysis presented in this report also underscores that the protection of the human rights of older persons living with cognitive impairment requires both respect for universal human rights principles and positive action by States. Ensuring the continued exercise of human rights cannot depend solely upon the commitment of families, caregivers or individual professionals. It requires States to develop and sustain rights-realizing systems and protection frameworks that translate human rights principles into laws, policies, institutions, services and communities capable of responding to cognitive change while respecting the person’s dignity, autonomy and human agency.

Such systems should not be assessed solely by the availability of health or social care services, but also by the extent to which they enable older persons to remain active rights holders throughout changing circumstances. This requires coordinated action across sectors, the meaningful participation of older persons in decisions affecting their lives, support for families and caregivers, professional education, accessible environments and effective mechanisms of accountability. The realization of human rights is therefore not the responsibility of a single institution or sector, but of society as a whole with the State’s full support.

Although this report focuses on older persons living with cognitive impairment, its implications extend more broadly to the interpretation of international human rights law wherever people experience increasing needs for care and support in exercising their rights. It affirms that the universality of human rights does not depend upon unchanged cognitive abilities, complete independence or unrestricted decision-making capacity. Rather, it depends upon the continuing recognition of every person’s equal dignity, human agency and entitlement to participate in shaping their own life with whatever support may be required.

This perspective invites a broader transformation in the ways societies understand ageing, disability and dependency. Instead of viewing increasing support needs as marking the progressive loss of autonomy and social value, a human rights-based approach recognizes those needs as circumstances that require corresponding adaptations in law, policy, professional practice and community life. In doing so, it reaffirms that the purpose of human rights is not only to protect individuals from discrimination or abuse, but also to create the conditions in which every person can continue to live with dignity, exercise agency and participate as an equal member of society throughout the life course.

The protection of the human rights of older persons living with cognitive impairment ultimately tests not the limits of human rights, but respect for their universality. Human rights do not cease to apply when cognition changes, when support becomes necessary, or when communication requires new forms of recognition. Rather, these circumstances challenge States and societies to ensure that existing rights continue to be recognized, exercised and realized throughout changing circumstances. The task is therefore not to redefine human rights for older persons living with cognitive impairment, but to reaffirm their universality by creating the conditions in which every person can continue to exercise human agency, participate meaningfully in decisions affecting their lives and remain a full member of society. The universality of human rights is ultimately measured not by how societies treat those who remain independent, but by whether people continue to enjoy and exercise those rights when support becomes part of everyday life.

In the light of the foregoing analysis, the Independent Expert recommends that States adopt legislative, administrative, judicial and other measures necessary to ensure the continuing exercise of the human rights of older persons living with cognitive impairment. The implementation of these recommendations should be guided by the recognition that cognitive impairment does not diminish personhood, human agency or entitlement to human rights. Their purpose is to ensure that older persons living with cognitive impairment continue to exercise those rights meaningfully throughout the changing circumstances of life. In doing so, States reaffirm not only the rights of older persons, but also the universality of human rights themselves.

The Independent Expert recommends that States recognize explicitly, in law, in policy and in practice, that cognitive impairment does not diminish personhood, human agency or entitlement to the full enjoyment and continuing exercise of human rights on an equal basis with others, including equal recognition before the law. States should ensure that age, diagnosis and cognitive impairment are never treated as sufficient justification for diminished recognition, exclusion, discrimination or the premature replacement of the person’s will with the decisions of others.

The Independent Expert recommends that States ensure that laws, policies and professional practices recognize older persons living with cognitive impairment as active holders of rights whose human agency continues throughout the course of cognitive change. States should promote approaches that seek first to recognize, interpret and support the person’s will, preferences, values and forms of expression, rather than replacing them with assumptions about incapacity or predetermined notions of best interests. States should also ensure, in all decisions affecting older persons living with cognitive impairment, that every reasonable effort is made to ascertain and give effect to the person’s will and preferences.

The Independent Expert recommends that States review and reform legislation, policies and practices that automatically restrict the autonomy, participation or exercise of the rights of older persons on the basis of age, diagnosis or assessments of cognitive functioning. States should ensure that older persons have access to the support necessary to understand information, communicate their wishes, participate meaningfully in decisions and exercise their rights to the greatest extent possible, including through supported decision-making, communication support, advance planning and trusted persons of their choosing. States should also ensure that any limitation on the exercise of rights remains lawful, necessary, proportionate, individualized, subject to regular review and consistent with international human rights law.

The Independent Expert recommends that States develop and implement laws, policies, professional standards and practices that recognize accessible and supported communication as an essential condition for the continuing exercise of human rights. States should ensure that older persons living with cognitive impairment have access to communication support, appropriate accommodations and sufficient time and other measures necessary to express their will, preferences, values and intentions. States should also promote education and training for professionals, caregivers and others to recognize, interpret and respond appropriately to diverse forms of communication, ensuring that communication is understood as a process of listening, interpretation and dialogue rather than as a test of cognitive ability.

The Independent Expert recommends that States promote the meaningful participation, social inclusion and belonging of older persons living with cognitive impairment in all areas of family, community and public life. States should remove legal, institutional, environmental and attitudinal barriers that limit participation on the basis of age or cognitive impairment, and create opportunities for older persons to remain connected to their families, neighbourhoods, workplaces where appropriate, and cultural, recreational, civic and religious life as equal members of their communities. States should also ensure that opportunities for participation extend not only to major decisions, but also to the ordinary choices, relationships and activities through which older persons continue to express their identity, human agency and equal citizenship.

The Independent Expert recommends that States establish, strengthen and sustain rights-realizing systems that place the continuing exercise of the human rights of older persons living with cognitive impairment at the centre of legislation, public policy, service delivery and professional practice. States should recognize that the development of such systems forms part of States’ positive obligations to respect, protect and fulfil the human rights of older persons. States should also ensure that health, long-term care, social protection, housing, justice, financial services, transport, digital technologies and other relevant sectors work in a coordinated manner to support autonomy, communication, participation, inclusion and the continuing exercise of human rights throughout the course of cognitive change.

The Independent Expert recommends that States ensure that health and long-term care services are organized around the person rather than the disease, respecting autonomy, informed consent, communication and meaningful participation throughout the course of cognitive change. States should ensure timely and equitable access to assessment, treatment, rehabilitation, palliative care where appropriate, supported decision-making, accessible information and coordinated multidisciplinary support. States should also evaluate health and long-term care services not only by clinical outcomes, but also by the extent to which they enable older persons to continue exercising their human rights, maintain relationships, participate in everyday life and remain active subjects of rights.

The Independent Expert recommends that States promote dementia-inclusive and age-inclusive communities that enable older persons living with cognitive impairment to remain visible, valued, connected and actively engaged as equal members of society. States should support accessible public spaces, housing, transport, cultural, recreational, civic and religious opportunities, and community organizations and other initiatives that strengthen belonging and enable the continuing exercise of human rights in everyday life. States should also combat ageism, stigma and discriminatory assumptions associated with cognitive impairment through legislation, public education and awareness-raising initiatives, professional training and other measures that promote recognition, inclusion and respect for the personhood, human agency and equal rights of older persons.

The Independent Expert recommends that States establish coherent legislative, policy and institutional frameworks that ensure the effective implementation of the human rights of older persons living with cognitive impairment across all relevant sectors. States should allocate adequate human, financial and technical resources, promote intersectoral cooperation and establish mechanisms for coordination, monitoring and accountability that assess not only health and social outcomes, but also the extent to which older persons continue to exercise their human rights, participate in decisions affecting their lives and remain active members of society. States should also ensure that the implementation of these measures is subject to regular review and informed by reliable data, research and evidence, while respecting human dignity, privacy and informed participation.

The Independent Expert recommends that States ensure the meaningful participation of older persons living with cognitive impairment, together with their representative organizations, families and caregivers, in the development, implementation, monitoring and evaluation of laws, policies and services that affect their lives. States should promote education, professional training, research and the systematic collection of reliable data on the human rights situation and lived experiences of older persons living with cognitive impairment, while respecting human dignity, privacy, autonomy and informed participation. States should use this knowledge to strengthen laws, policies and professional practice and to promote the continuing recognition of personhood, human agency and the exercise of human rights throughout changing circumstances.