Cognitive Impairment: How States Quietly Strip Elderly of Dignity -By Fransiscus Nanga Roka

Using cognitive impairment as a handy justification, the States, health systems and families have gradually stripped millions of older persons of their decisional autonomy, participation and dignity while pretending to be compliant with various human rights frameworks.

The modern machineries of rights, too, still rotate around an imaginary citizen: a person who articulates eloquently, reliably recalls their past and affirms autonomy in mannerisms that align with legal paradigms and courtroom tropes. That ideal collapses when cognition becomes unstable or impaired, taking with it our practical exercise of rights. Older persons with cognitive impairment might forget names or dates, but they do not lose emotional life, subjective experience, moral values and the need to be recognised as a person. But in the very architecture of rights, their absence from discussion is already assumed as soon as speech falters or eyes confuse memories.

The various forms of regimes of “protection” across jurisdictions become the velvet glove over the iron fist. Guardianship laws, substitute decision-making, inflexible institutional routines and paternalistic clinical guidelines enable professionals and relatives to hijack decisions while claiming they are doing it in the best interests of the person. Micro practices that is, everyday and automatic processes such as third parties automatically signing consent forms, older persons being excluded from care conferences or pre set treatment plans are not things that leave black-and-blue bruises on the body but nevertheless silence older persons with cognitive impairment. What begins as excessive protection soon solidifies into an institutional assumption of lack, wherein the perpetually elder becomes a risk in need of management rather than a being whose variable autonomy can be supported.

When cognition changes autonomy is mostly not recalibrated, it is simply switched off. Rather than support decision making, context sensitive assessments, shared autonomy and relational forms of choice, many systems reach for a binary judgement capable today, incapable tomorrow and triggering cascading exclusions from quotidian decisions. Which amounts to a soft headed bureaucratic coup against the older mind: rights are theoretically upheld, but in fact cancelled.

It does not start off with violence but with the inability to bend an ear. Older, cognitively impaired persons are routinely talked down to, dismissed, infantilized or treated as basically props in their own lives. They are excluded in discussions about hospitals and care homes, shut out of family discussions and sidelined in community life. They process their comebacks as non verbal, emotional and partly constructive preferences, reducing the descriptive value of them to “symptoms”.

They are the symptom of silence, and this mundane silencing erodes symbolic adulthood. The social roles disappear; obligations are eliminated; participation is lessened until the older person becomes a ghost in the community. States do not officially revoke legal status and cannot cancel citizenship, but in allowing institutions and practices that erase voice they collude with a slow social incorporating of personhood. It is not just the spectacular atrocity that violates human dignity; it is also a routine of care which reduces a living subject to the object of our care rather than her being one who co authors her own story.

State actors reinforce or legitimize the many stigmas, fears and cultural myths that envelope cognitive impairment. Dementia in this narrative is an awful tumble into the abyss of functional not-person-ness where any and every last bit of legal and moral agency disappears. Older persons living with cognitive impairment are excluded from public, political and cultural life by such stereotypes as frightening in the name of order and safety: They are denied access to community spaces or deliberative forums, even religious gatherings.

In the absence of action to counter this stigma through law, policy and public debate, States weaponize stigma as an unofficial tool of governance. Dementia fear becomes a justification for segregation, while assumptions of incompetence excuse infantilisation and social distancing is seen as natural rather than challenged as discrimination. As seen in our work, when governments determine their budgets without allocating to anti stigma initiatives or other training which endorses inclusive environments and suggests cognitive vulnerability can coexist with dignity respecting rights, they communicate the idea that diminished dignity is an appropriate collateral cost of ageing.

There is a political economy of silence; behind the rhetoric of ‘care’ lies an invisible older person with cognitive impairment. Passive, unquestioning residents devoid of recognized autonomy make for easy prey by understaffed institutions, unregulated private facilities and profit driven care models. Someone who expects to be consulted in daily decisions, what to eat, where to live, how to spend their times, makes a one size and fits all approach and cost-savings harder.

The absence of participation, autonomy and dignity data for older persons who are cognitively impaired from the State level effectively removes this group from human rights monitoring at the macro level. Budgets indicators and policies are played out without their voices, accordingly, violations taking place in care homes hospitals and community settings are statistically muted. This is not bureaucratic mismanagement, this is a political choice to treat cognitive impairment as a clinical matter rather than the fault line of twenty first century human rights.

If cognitive impairment does not erase personhood, then it cannot erode rights. It is the move away from this binary model of autonomy, that either you are or you are not autonomous, towards non autonomous acts, supported decisions but without this being a dichotomous choice and relational (and perhaps context dependent) forms of decision making. Legal frameworks should shift from substitute decision making towards models centered around the older person’s wishes and preferences, even when they must be understood through either non verbal communication, trusted relationships or prior expressions.

This, in practice, means redesigning care environments as places where participation is a default assumption: not an extravagance. Conversations and relationships and everyday choices what to wear or eat; where to sleep or work; who to befriend, serve with or vote for and must be designed so they involve cognitively disabled old people as subjects. Communication support, person centred practices and shared autonomy should be seen as core competencies rather than optional ethics modules in professional training. The initiatives against stigma will target the myth of cognitive handicap being identical to moral or legal disappearance.

The call for input to the Human Rights Council by the Independent Expert implicitly puts States on trial: what have laws, policies and practices done to both sustain or undermine autonomy, participation and dignity of older persons with cognitive impairment? All the while presiding over systems that infantilize, silence and socially erase those whose cognition is vulnerable, it is no longer a viable hiding place for governments to huddle behind the rhetoric of protection.

The onus has now shifted to States to demonstrate that they will reshape the very grammar of rights; that older persons with intermittent or impaired cognition are seen by others as rights holders not objects to be managed. Anything lower will acknowledge an ugly reckoning: cognitive impairment is the twenty first century’s Last Frontier, where we unceremoniously vanquish human rights at the threshold of age.

Fransiscus Nanga Roka

Faculty of Law University 17 August 1945 Surabaya and Managing Partner Law Firm Victorious Indonesia