Rights of the person despite disorders: Freedom vs security

This article does not decide for you, because no general rule can do so. It sheds light. It explains what rights a person retains when their abilities decline, what the French legal framework says, how decisions are made when consent becomes uncertain, and above all how, on a daily basis, one can protect without dispossessing. It is neither legal advice nor medical advice: it is about better understanding the opinions you will receive and asking the right questions to the right people.

A person's rights do not disappear with disorders

This is the starting point for everything else, and it deserves to be stated unequivocally: a diagnosis is not a loss of rights. A person with Alzheimer's disease retains, until the end, their status as a rights holder. They continue to hold the same fundamental freedoms as any citizen. The disease may impair their ability to exercise these rights independently; it does not eliminate them.

This principle is not a mere expression of goodwill. It is enshrined in legal texts. The Declaration of Human Rights, the European Convention on Human Rights, and several major laws in France organize the protection of vulnerable individuals around a constant idea: we protect the person, not just their assets, and we protect them while respecting who they are.

Four rights that the disease does not suspend

This foundation has a very concrete practical consequence for families: helping a sick loved one does not mean deciding for them by principle, but precisely filling in what they can no longer do alone, while leaving everything else to them. It is exactly the opposite of the spontaneous protective reflex, which tends to take over everything at once "to simplify".

Why these rights are so often forgotten

If these principles are clear on paper, they easily fade in real life, and for understandable reasons. The caregiver's fatigue pushes to act quickly: deciding for oneself is faster than explaining, waiting, or dealing with a refusal. Worry then prioritizes safety above all else; one prefers to restrict rather than risk an accident for which one would feel guilty. Finally, habit sets in: by constantly doing things for the person, one ends up not offering them the chance to do anything, and one interprets their silence as consent, or even as absence.

Recognizing these mechanisms is not a trial; it is a way to remain clear-headed. Respecting rights is not an extra soul reserved for easy moments; it is precisely played out in constraint, fatigue, and urgency. Regularly reminding oneself that the person remains the subject of their choices, even when diminished, helps to correct the natural slope towards dispossession — and to distinguish between supportive help and suffocating help.

Freedom or safety: moving beyond a false opposition

The question is often presented as a dilemma: either prioritize freedom and accept a risk, or prioritize safety and restrict. This way of framing the problem is misleading because it suggests that one must choose a side once and for all. In reality, it is almost never all or nothing, but rather a balancing act, situation by situation, that readjusts with the progression of the illness.

Absolute safety does not exist, and its pursuit comes at a cost. A person who is prevented from moving "to avoid falling" loses muscle mass, balance, and confidence — and ends up falling more, or deteriorating faster. A person who is deprived of all initiative to protect them fades away, withdraws, and becomes depressed. The zero-risk approach comes at the expense of autonomy, morale, and sometimes life expectancy. Conversely, freedom without any safeguards exposes one to real dangers: getting lost, forgetting the gas, being financially abused.

The right reflex: reason in terms of acceptable risk, not zero risk

Geriatric professionals often speak of "the dignity of risk": the right for a person to continue taking certain measured risks because they are part of a life worth living. The useful question is therefore not "how to eliminate all danger?" but "what risk does this restriction actually avoid, and what does it cost in return?".

This table does not have a universal correct answer. Its interest is to shift the question : before restricting, we systematically look for arrangements that preserve freedom while reducing danger. Restriction becomes the solution of last resort, not the first.

Consent when the disease progresses

In France, no care can be provided without the free and informed consent of the person : this is a principle established notably by the law of March 4, 2002, relating to the rights of patients. This principle does not fade when cognitive disorders appear. It simply becomes more delicate to implement, because consent implies understanding the information, retaining it for a moment, weighing it, and expressing a choice — all steps that the disease can weaken.

The great mistake would be to conclude : “ she has Alzheimer's disease, so she can no longer consent to anything. ” Consent is not evaluated globally, once and for all. It is assessed decision by decision, and at a given moment. The same person may be unable to understand the stakes of a major operation, and perfectly capable of saying that she does not want this dessert, that she prefers a certain color of clothing, or that she refuses to let a certain person enter her room.

Seeking consent, even if altered

• Inform differently. Short sentences, one idea at a time, visual aids, calm moments : adapting information is not distorting it, it is making it accessible.
• Distinguishe refusal from opposition. A “ no ” is not always a thoughtful refusal ; it may express fear, pain, or misunderstanding. We seek to understand what it means before responding.
• Gather assent. When fully informed consent is no longer possible, we seek at least the assent : that the person accepts, without pressure, what we propose, in the moment.
• Document and communicate. What the person expresses — their preferences, their repeated refusals — is noted and shared with the care team, which takes it into account.

Legal protection measures in France

When a person is no longer able to manage their interests alone, the law organizes their protection. The reform brought by the law of March 5, 2007 established three principles that govern the entire system, and it is useful to keep in mind : protection must be necessary (justified by a medically established impairment), subsidiary (it is only used if no other arrangement is sufficient), and proportionate (the least restrictive measure possible is chosen). In other words : we protect to the minimum necessary, never to the maximum possible.

These measures are not decided by the family : they fall under the jurisdiction of the protection litigation judge (the former guardianship judge), who is seized based on a detailed medical certificate written by a doctor listed on a specific list. Here are the main ones, from the least restrictive to the most controlling.

Three essential ideas about these measures

1. They are tailored. Guardianship is not a blank check that removes all rights. The judge can decide that a person under guardianship continues to vote, choose their place of residence, or make certain personal decisions. The measure lists what is regulated ; the rest remains.

2. Personal rights endure. Even under guardianship, certain decisions remain strictly personal and cannot be made by the protector : getting married or entering a civil partnership (with, depending on the case, information or authorization), acknowledging a child, drafting or revoking advance directives. The estate is managed ; the person remains in control of their intimate life to a large extent.

3. Protection is reassessed. A measure is pronounced for a determined duration and can be eased, strengthened, or lifted according to developments. It is not a definitive condemnation: if the condition improves — after a Stroke for example — it must be revised.

Family authorization or classic measure: understanding the difference

Recently introduced into the legal landscape, family authorization addresses a common situation: a united family, around a loved one who can no longer manage their interests alone, and who wishes to organize without the formalism of guardianship. Once the authorization is granted by the judge, the designated person acts without having to report continuously, unlike the guardian who is subject to regular oversight. This flexibility requires, in return, a family consensus: in case of disagreement among relatives, or when interests oppose, a classic measure — curatorship or guardianship — offers more safeguards.

The choice between these arrangements is not obvious and depends on a set of factors: nature of the assets, family agreement, degree of impairment, existence or not of a pre-prepared mandate. Again, support from a professional avoids mistakes: a poorly calibrated measure can prove either too heavy and humiliating, or too light and insufficiently protective. The objective remains constant: to closely match the real need, neither more nor less.

Anticipate while there is still time

This is undoubtedly the most useful message of this entire article, and the most difficult to convey, because it involves talking about dependency before it arrives. Yet it is precisely this moment — when the person still understands, still decides, still expresses — that offers the greatest freedom. Anticipation tools allow choices to remain those of the person, and not those made in urgency and doubt by their surroundings.

Three tools to know and prepare early

These devices complement each other: advance directives concern care, the trusted person concerns support and speech, the future protection mandate concerns overall management. Preparing them together, while the person is fully capable, offers the most faithful protection of their wishes.

1. Start the conversation early. Ideally after a diagnosis, as long as reflection is possible. Approach the subject calmly, without dramatizing, explaining that it is a way to keep control.
2. Clarify the wishes. What matters to the person: where they want to live, what they accept or refuse as care, who they want involved in the decisions.
3. Put it in writing. Advance directives and designation of the trusted person can be drafted on plain paper; official templates exist. The future protection mandate is drafted privately or, for more impact, before a notary.
4. Keep and make known. These documents are only useful if they can be found. Indicate where they are, inform the treating physician and the relevant relatives.
5. Review. Wishes evolve; documents do too. Periodically reread them and update them as long as possible.

Balancing freedom and security in daily life

The fundamental principles clash every day with very concrete, often tense situations, where quick decisions must be made. This is where the respect for rights truly plays out: not in the texts, but in the way one responds, on a Tuesday evening, to a disoriented person who wants to leave. Here are some common situations and suggestions for responding while preserving both freedom and safety.

“ She wants to go home” while she is already there

This phrase, very common in dementia, is almost never a geographical request. The “home” often refers to a place from the past, to a lost sense of security. Contradicting (“but you are at home!”) increases anxiety. Instead, one can acknowledge the emotion and gently redirect attention.

The risk of wandering and leaving

The fear that a loved one will get lost is one of the most intense. It sometimes leads to locking doors — which poses, as we will see, a real problem. Before reaching that point, several adjustments exist: wrist-worn geolocation devices, identity and phone number in pockets and clothing, securing access without confinement, presence of a notified neighborhood, ritualized accompanied outings so that the need to walk finds a structured outlet.

Driving

This is one of the most painful subjects because the car symbolizes independence. Cognitive disorders can make driving dangerous for the person and for others. The issue cannot be resolved through a power struggle. One can rely on the doctor, who has the authority to discuss driving ability, consider a specialized evaluation, and present the cessation as a medical decision rather than as a family punishment. Anticipating alternatives (accompanied transport, delivered shopping) makes the renunciation less abrupt.

Money and financial vulnerability

People with cognitive disorders are particularly vulnerable to aggressive marketing, telephone scams, and exploitation. Protecting without humiliating requires a graduated approach: leaving money for daily needs and small pleasures while securing large transactions (limits, co-ownership, protective measures for significant actions). Removing all financial autonomy at once is experienced as dispossession and fosters distrust and conflict.

Refusal of help and the feeling of intrusion

Many people experience the arrival of helpers, caregivers, or monitoring devices as an intrusion into their privacy, and this feeling deserves to be taken seriously rather than dismissed. A camera in the living room, a motion detector, a notebook where strangers write observations: these tools reassure those around, but they can also give the person the feeling of being watched in their own home. The right balance is to explain, to seek consent whenever possible, to favor the least intrusive devices, and to reserve the most advanced monitoring means for situations where the danger truly justifies it. A silently imposed aid is better tolerated when it has first been proposed, named, and, as much as possible, chosen.

Restraint and restrictions: what the framework says

Restraint — physical (bed rails, straps, blocking chairs), or medication (sedatives given to "calm") — and confinement are the most delicate subjects, because they directly affect the freedom to move about. The general principle, reiterated by the High Authority of Health, is clear: these measures must remain exceptional, decided as a last resort, for the shortest duration possible, and never to compensate for a lack of staff or for mere convenience.

The guidelines that frame any restriction

• Necessity. There must be a real, serious, and immediate danger that no other solution can eliminate. Restraint is not a comfort prevention.
• Proportionality. The measure must be the least restrictive possible and adapted to the specific identified danger.
• Decision and prescription. A restraint is a documented medical decision, justified, and not an isolated initiative.
• Monitoring and reevaluation. A person under restraint must be closely monitored, and the measure reexamined very regularly, to be lifted as soon as possible.
• Searching for causes. Before restraining, one seeks to understand why the person is agitated, wandering, trying to leave: pain, need to eliminate, boredom, fear, effect of a medication. Addressing the cause often avoids the need for restraint.

For families, the role is not to decide alone on a restraint — it is not their responsibility — but to remain vigilant: question what is being put in place, ask on what basis and for how long, report what they observe. A bed rail put in place "by habit" or a chair from which one can no longer get up deserves a question, not resignation.

At home as in an institution: rights that do not fade away

The living environment changes practical constraints, but not fundamental rights. Whether the person lives at home, with a relative, or in an institution (Nursing home, residence), they retain their dignity, privacy, freedom, and right to participate in decisions. However, the framework differs depending on the location.

At home

This is often the place that respects freedom the most, but also the most exposed to caregiver burnout and material risks. The person's rights are fully expressed here: they remain at home, master of their habits. The challenge is to maintain safety without turning the home into a space of constant surveillance. Housing adaptations, home care, nursing visits, day care: respectful home care relies on external support, not just family vigilance.

The home also puts two rights in tension that sometimes contradict each other: the right of the person to live at home as they see fit, and the right of the caregiver not to sacrifice themselves. A relative who refuses any external help, out of distrust or denial of disorders, can place their surroundings in an exhausting deadlock. There is no miracle recipe, but a few levers help: introducing help gradually and under an acceptable pretext (a "help with cleaning" rather than "help with dependency"), relying on the attending physician whose word often carries more weight than that of the family, and accepting that home care has its limits. Recognizing these limits in time is not a failure: it is to protect both the person and those who support them.

In an institution

Entering an institution does not strip away one's rights. The law of January 2, 2002, renovating social and medico-social action, established precise guarantees for the people welcomed, formalized notably by a charter of rights and freedoms of the resident. Among the recognized rights:

In case of persistent difficulty — a restriction that seems abusive, an infringement on dignity — several recourses exist: dialogue with management and the team, a qualified person designated in the department, and institutions like the Defender of Rights, which ensures respect for the rights of elderly people and people with disabilities.

Common misconceptions about rights and protection

“As soon as there is a diagnosis, the person loses all their rights”

False. A medical diagnosis does not automatically result in a loss of rights. Only a judge can decide on a protective measure, and this measure is graduated, limited to what is necessary, and subject to review. Outside of such a decision, the person retains their full legal capacity.

“Under guardianship, one can no longer decide anything”

False. Guardianship organizes representation for the acts listed by the judge, but many personal decisions remain with the person, and the judge can expressly leave others to them. The measure aims to protect, not to erase will.

“It is up to the family to decide for their well-being”

Nuanced. The family plays a central role in support, but it does not replace the person without limits. For care, it is the person's will — sought and expressed if necessary through advance directives and the trusted person — that prevails, under the responsibility of the doctor.

“Locking the door is for their safety, so it is allowed”

False as a general principle. The freedom to come and go is a fundamental right; confinement and restraint are strictly regulated and must remain exceptional, justified, and reassessed. Good intentions are not enough to make them legitimate.

“Anticipating one's wishes is morbid and unnecessary”

False. Advance directives, trusted persons, and future protection mandates are tools of freedom: they allow choices to remain those of the person, even when they can no longer express them. Preparing them is to protect their will, not to hasten their end.

“A person who no longer speaks does not understand anymore”

False, very often. The loss of speech or memory does not equate to an absence of inner life, feelings, or preferences. One continues to address the person, to respect them, and to seek their consent, until the end.

Accompanying without dispossessing: the right posture

All of the above boils down to a single requirement, difficult but feasible: accompany without dispossessing. Respecting the rights of the person despite the disorders does not mean acting as if nothing is wrong, nor leaving them alone in the face of dangers they can no longer gauge. It involves constantly adjusting the balance between support that enables and restriction that protects, always keeping the person at the center rather than on the periphery of their own life.

This posture relies on a few simple reflexes, which do not require legal expertise but constant attention. They can be summed up in one sentence: do with as often as possible, do for only when necessary, and never do against without a serious and discussed reason.

One must also accept a part of imperfection. We will sometimes misjudge the measure: too much freedom one day, too much restriction the next. The important thing is not to achieve a perfect and impossible accuracy, but to stay the course: to constantly return to the question “am I deciding for their real good, or for my peace of mind?”, and correct when we have strayed. The rights of the person despite the disorders are not defended once and for all; they are protected step by step, choice by choice, until the end of the support.

To go further

This article opens a set of guidelines on supporting elderly people and respecting their rights. Other contents in this series delve into each aspect of the subject:

On the side of practical resources: the DYNSEO tools catalog gathers useful materials to observe, note, and convey what is noticed over time, while the cognitive tests allow for an initial orientation point — without diagnostic value, but useful for opening a dialogue with a healthcare professional.

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