Choice, Autonomy and Decision-Making in Irish Older People’s Care: Rights, Capacity and Supported Decision-Making

An older person may decide to remain at home despite a risk of falling. A nursing-home resident may refuse a shower, choose food that does not fit a recommended diet or insist on continuing a relationship that worries their family. Somebody living with dementia may be able to decide what clothes to wear and whether to attend an activity while needing substantial support to understand a complex property transaction. None of these situations can be resolved properly by asking whether the person simply “has capacity”.

Ireland’s approach to decision-making changed fundamentally when the Assisted Decision-Making (Capacity) Act 2015, as amended, came into operation in April 2023. Across the Ireland Ageing, Long-Term Care & Community Support Knowledge Hub, this reform matters because autonomy now sits more clearly at the centre of how care, treatment, accommodation, finances and future planning should be approached.

The Act replaced the old assumption that people could be treated globally as capable or incapable with a functional, decision-specific and time-specific approach. It also created formal mechanisms through which people can receive different levels of support and expanded opportunities to plan ahead through enduring powers of attorney and advance healthcare directives.

The practical significance is considerable. Professionals, providers and families increasingly need to distinguish support from substitution, advice from control and protection from unnecessary restriction. The strongest older-person services will therefore be those that embed decision-making rights into ordinary practice rather than treating capacity law as something activated only when disagreement occurs.

Irish law begins with a presumption of capacity

The Assisted Decision-Making framework starts from a powerful principle: every adult is presumed to have decision-making capacity unless the contrary is shown in relation to a particular decision.

Age does not remove that presumption.

Neither does a diagnosis of dementia, stroke, acquired brain injury, mental illness or intellectual disability. A person cannot be treated as unable to decide simply because they receive significant care or because their choices appear risky.

This changes the practical question professionals should ask.

Instead of beginning with “Can this person make decisions?”, the starting point becomes: “What is the decision, what support might help the person make it and is there a genuine reason to question their ability to decide this particular issue at this particular time?”

That approach aligns closely with mental capacity, consent and supported decision-making, although Irish practice should always be understood through Ireland’s own statutory framework rather than imported terminology from another jurisdiction.

Capacity is specific to a decision and a moment in time

The functional approach is one of the most important features of Ireland’s system.

Where a person’s capacity is genuinely in question, the assessment focuses on whether they can make the specific decision at the time it needs to be made.

The relevant person needs to be able, with appropriate support, to:

• understand information relevant to the decision;
• retain that information long enough to make a voluntary choice;
• use or weigh the information as part of the decision-making process; and
• communicate the decision by any means, including assistive technology.

This prevents blanket conclusions.

An older person with moderate dementia may be unable to understand a complicated mortgage arrangement while remaining perfectly capable of deciding who visits them, what they eat, whether they attend a day service or which clothes they wear.

Capacity can also fluctuate. Delirium, infection, medication effects, pain, fatigue or anxiety may temporarily reduce somebody’s ability to engage with a difficult decision. Where a decision can safely wait, postponing it may allow the person to participate more fully later.

The distinction matters because unnecessary substitution of decisions can quickly erode autonomy across everyday life.

Support must come before conclusions about incapacity

Irish law requires meaningful efforts to support a person before concluding that they cannot make a decision.

Support may be simple.

A conversation might be moved to a quieter room. Information may be divided into smaller parts. A person may need their glasses, hearing aid or communication device. A trusted relative may help explain unfamiliar information without taking over the decision. A person with fatigue may understand better earlier in the day.

Information itself may need to be redesigned.

Accessible language, photographs, diagrams, demonstrations or repeated conversations can significantly change whether somebody understands the choices before them. The requirement therefore connects directly with accessible information and communication.

Support is not an optional courtesy before a capacity assessment. It is part of respecting the person’s legal position as the primary decision-maker.

Scenario: discharge planning becomes a supported decision rather than a family decision

An 82-year-old woman in a Dublin hospital is medically ready for discharge after a fall. Her daughter believes she should move permanently into a nursing home because she lives alone and has fallen twice in the previous year.

The woman says she wants to return home.

During the first discharge conversation she appears overwhelmed and struggles to describe the risks. The family interprets this as evidence that she cannot decide.

The multidisciplinary team takes a different approach. The occupational therapist explains the practical home risks using photographs and discusses possible adaptations. Physiotherapy reviews mobility. Home-support options are explained in straightforward language and the discussion is repeated when the woman is rested.

She demonstrates that she understands the risk of another fall, the limitations of available home support and the alternative of residential care. She still chooses home.

The team therefore works with her on a discharge plan rather than allowing the daughter to substitute her own preference.

The decision involves risk, but it is the woman’s risk to consider.

The scenario illustrates an important distinction: professionals are responsible for making risks understandable and planning proportionate support. They are not automatically entitled to choose the safest possible living arrangement on somebody else’s behalf.

An unwise decision is not evidence of incapacity

People make decisions throughout life that others disagree with.

Older people retain the same right.

Choosing to continue smoking, refusing physiotherapy, spending money on something a family member considers unnecessary or returning to a relationship that carries some risk does not by itself demonstrate lack of capacity.

Confusing disagreement with incapacity creates a serious rights problem.

It also disproportionately affects older people because frailty or dependence can make professional and family opinions more influential.

The principle of choice and control therefore applies even where the eventual decision is not the one a professional would have made.

The role of care should be to improve the quality of the decision by providing information, support and alternatives, not to guarantee that the person chooses the option regarded as safest.

Consent is an ongoing process, not a signature

The HSE National Consent Policy reinforces that people have the right to decide whether they accept health and social care interventions.

Valid consent depends on voluntariness, understandable information and decision-making capacity in relation to the intervention.

Consent should therefore not be reduced to a form signed once on admission.

A nursing-home resident may consent to assistance with personal care in general but refuse a particular intervention on a particular morning. A person receiving home support may decide they no longer want a worker to assist with medication. Somebody attending hospital may withdraw previously given consent before a procedure.

Care teams need to treat consent as part of an ongoing relationship.

That includes noticing non-verbal communication. A person may communicate agreement or refusal through gestures, facial expression, behaviour or assistive technology rather than speech.

The practical standard is not whether paperwork exists. It is whether the person understood what was proposed, was able to choose voluntarily and had their decision respected.

Families are important, but “next of kin” is not a substitute decision-maker

One of the most persistent misconceptions in health and social care is that a spouse, adult child or person recorded as “next of kin” automatically has authority to consent on behalf of an adult who cannot decide.

That is not Ireland’s legal position.

Family members may know the person extremely well and their views can be invaluable in understanding the person’s history, preferences and communication. They may also hold formal authority under a decision-support arrangement.

But family relationship alone does not confer legal power to provide or refuse consent for another adult.

This distinction is especially important in older-person care because families often become heavily involved when somebody develops dementia or frailty.

Good practice therefore values family and advocate involvement without allowing participation to become automatic control.

Professionals need to establish what legal authority, if any, a relative actually holds and what decisions that authority covers.

Ireland now has graduated forms of formal decision support

The Assisted Decision-Making framework recognises that people require different levels of help.

It therefore provides three arrangements for people who currently need, or may shortly need, assistance with particular decisions.

A decision-making assistance agreement allows a person to appoint somebody they trust to help them obtain information, understand options and communicate decisions. The decision-making assistant supports the person but does not make the decision for them.

A co-decision-making agreement provides a higher level of support. The person and co-decision-maker make specified decisions jointly. The agreement must be registered with the Decision Support Service before it becomes operative.

Where a person lacks capacity for specific decisions and another arrangement is not sufficient or available, the Circuit Court can make a decision-making representation order and appoint a decision-making representative with authority limited to the decisions covered by that order.

The architecture matters because support should be proportionate.

A person who needs help understanding correspondence should not automatically be moved into a more restrictive arrangement that transfers wider authority.

Decision supporters have defined authority, not unlimited power

Providers and professionals need to understand the scope of formal arrangements rather than simply recording that somebody “has a decision supporter”.

Authority may relate to property, finances, accommodation, personal welfare or specified healthcare decisions depending on the arrangement.

It may also be limited by conditions.

This creates a practical verification requirement.

When a person presents as having a co-decision-maker, decision-making representative or attorney, the service should establish whether the arrangement is valid and whether the decision currently being made falls within its scope.

The Decision Support Service maintains records and oversight of relevant arrangements, although different arrangements have different registration and notification requirements.

Strong governance therefore avoids two opposite errors: ignoring a legally appointed supporter or granting somebody authority beyond what the arrangement actually provides.

Organisations examining similar accountability questions can use the Governance Maturity Assessment to consider whether decision-making authority, escalation and oversight are sufficiently clear. It does not replace Irish law, but it can help expose weaknesses in how organisational responsibility is understood.

Scenario: a daughter says she has authority over all decisions

An older man with early-stage dementia moves into a nursing home in Cork. His daughter tells staff that she holds an enduring power of attorney and should therefore approve his healthcare, finances, visitors and activities.

Staff initially begin routing most decisions through her.

A senior nurse reviews the arrangement and identifies two problems.

First, the father retains capacity for many everyday decisions and should continue making them himself.

Second, the enduring power of attorney does not create unlimited authority over healthcare treatment decisions.

The team therefore changes its approach.

Staff speak directly to the resident about daily life, care preferences and relationships. The daughter remains involved where her formal authority applies and where her father wants her support. Healthcare consent is managed according to the appropriate legal and clinical framework rather than assumed to sit with the attorney.

The change reduces tension rather than increasing it. The daughter receives a clearer explanation of her role and no longer feels she must carry responsibility for every decision.

The resident also regains control over choices that had gradually been transferred away from him without any formal capacity assessment.

The scenario demonstrates why autonomy depends on understanding the boundaries of authority, not merely recognising that an arrangement exists.

Enduring powers of attorney allow people to plan for future loss of capacity

An enduring power of attorney allows an adult with capacity to appoint a trusted person to exercise specified authority if the adult later loses capacity in relation to those decisions.

Under the post-2023 system, new enduring powers of attorney operate through the framework supervised by the Decision Support Service.

They can cover areas such as personal welfare and property and affairs, subject to the terms chosen by the person creating the arrangement.

The important principle is advance control.

The person decides while they have capacity who should act and what authority they should have.

This can be highly relevant to ageing because future cognitive impairment cannot always be predicted precisely. Planning ahead may reduce uncertainty and family conflict if capacity later changes.

Older people should nevertheless receive independent information before creating significant legal arrangements. An enduring power of attorney transfers potentially substantial authority and should never be treated as a routine administrative form completed simply because somebody has reached a particular age.

Advance healthcare directives protect treatment choices into the future

Advance healthcare directives serve a different function.

An adult with capacity can record healthcare treatment decisions intended to operate if they later lose capacity to make those decisions.

A directive can contain treatment refusals and can also state treatments the person would like clinicians to consider. A person may appoint a designated healthcare representative to interpret the directive and exercise healthcare decision-making authority within its scope.

A valid and applicable refusal of treatment can be legally binding when the statutory requirements are met.

A request for particular treatment does not create an entitlement to clinically inappropriate treatment, but it should inform the decision-making process.

This distinction matters because an advance healthcare directive is not the same as a general advance care plan.

People may record broader wishes about where they want to be cared for, who they want involved or what matters to them. Those wishes remain highly important even where they do not carry the same legal effect as a qualifying treatment refusal.

Advance care planning should be a conversation, not an admission requirement

Planning for future deterioration can be valuable, particularly for people living with progressive illness or dementia.

But advance planning loses its legitimacy if people feel pressured into making decisions because a service wants administrative certainty.

Conversations should allow time for reflection and should be revisited as circumstances change.

An older person may initially say they never want hospital treatment and later alter that view after experiencing a treatable illness. Another person may want hospital admission for reversible conditions but not burdensome treatment during advanced terminal illness.

These are nuanced preferences.

The strongest care planning and review processes distinguish between what the person wants now, what they may want in future circumstances and what legal authority attaches to particular documents.

They also ensure that relevant plans can actually be found when needed.

Dementia does not create a single point at which autonomy disappears

Dementia makes supported decision-making particularly important because capacity may change gradually and differently across different domains.

A person may retain extensive decision-making ability for years after diagnosis.

Even where more complex decisions become difficult, ordinary preferences remain highly significant.

What time somebody gets up, which clothes they wear, what music they listen to, whether they want visitors and how they spend their day should not automatically become staff or family decisions.

Good dementia practice therefore protects small decisions as seriously as major ones.

These choices sustain identity.

They also provide evidence about the person’s will and preferences if more difficult decisions later need to be considered.

This connection between autonomy and everyday life is central to person-centred dementia planning.

Scenario: a resident repeatedly refuses personal care

A woman living with dementia in a Galway nursing home begins refusing morning showers. Staff become concerned about hygiene and initially describe her as “non-compliant”.

Rather than treating the refusal as evidence that she cannot decide, the team investigates what the behaviour may be communicating.

They learn from her family that she has always preferred bathing in the evening. Staff also notice that she becomes distressed when unfamiliar workers approach quickly in the morning.

The care plan is changed. Personal care is offered later in the day by workers she knows, with clear explanation and more time for her to respond.

Her distress reduces markedly.

There was never a need to override her refusal.

The service had originally framed an organisational preference as a care requirement.

The scenario demonstrates why autonomy is often protected not by complex legal intervention but by curiosity, communication and flexibility. A refusal can be meaningful information about how care should change.

Risk enablement is part of autonomy

Older-person services often operate under pressure to eliminate risk.

Families may fear another fall. Providers may worry about liability. Professionals may feel uncomfortable when somebody rejects recommendations.

But eliminating all risk can eliminate ordinary life.

Walking independently, cooking, going outside alone, drinking alcohol or managing personal money may all involve some possibility of harm.

The appropriate response is proportionate support rather than automatic prohibition.

This aligns with positive risk-taking and risk enablement.

Organisations can also use the Positive Risk Taking Planner to structure comparable conversations about choice, benefit, risk and proportionate controls. It is not an Irish legal decision-making instrument, but it can help teams avoid reducing complex choices to simple risk avoidance.

Nursing homes need to distinguish care responsibility from control

Residential services have legitimate responsibilities for safety, staffing, infection prevention, medication management and the welfare of all residents.

Those duties do not create a general power to control residents’ lives.

This boundary can become blurred because institutional routines are efficient.

Fixed meal times, standard bedtimes, organised activity schedules and restrictions on leaving the building may simplify service delivery while gradually reducing individual choice.

HIQA regulation of designated centres places resident rights, dignity, consultation and participation within the quality framework for nursing homes.

The operational test is therefore whether systems adapt around people rather than expecting every person to adapt around the institution.

This does not mean every preference can always be delivered exactly as requested. Staffing, the rights of other residents and genuine safety constraints matter.

But where a choice cannot be accommodated, the service should be able to explain why and demonstrate that alternatives were explored.

Home support carries its own risks of paternalism

Home support is often described as inherently person-centred because care takes place in somebody’s own home.

That is not automatically true.

A worker may still take over tasks that the person could do independently, rearrange belongings without agreement or discourage somebody from activities regarded as unsafe.

Time pressure can intensify this.

Completing a task for somebody may be faster than supporting them to do part of it themselves.

But repeated substitution can accelerate loss of confidence and function.

Person-centred home support therefore needs to distinguish between doing things for a person and supporting them to do as much as possible themselves.

The future regulation of home-support services in Ireland should strengthen accountability around rights and person-centred practice as the new statutory framework develops.

Scenario: family concern conflicts with an older person’s wish to keep cooking

A 79-year-old man in Mayo receives home support following a hospital admission. His son asks workers to stop him using the cooker because he once left a saucepan unattended.

The man strongly objects. Cooking his evening meal is one of the few household activities he still manages independently.

The service does not treat the son’s request as an instruction.

Instead, staff explore the actual risk with the older man. Occupational therapy reviews the kitchen. The team considers whether the incident was isolated, whether cognition has changed and whether practical adaptations could reduce risk.

A safer routine is agreed, including simpler meals and an automatic shut-off device. The man understands that further incidents may prompt another review.

His son remains worried but accepts that his father has been involved directly in the decision.

The arrangement is then monitored rather than assumed to be permanently safe.

The outcome preserves a meaningful activity while addressing foreseeable risk.

The important point is not that cooking should always continue. It is that restriction should follow individual assessment and supported decision-making rather than family anxiety alone.

Professionals need clear records of how decisions were reached

Respecting autonomy does not remove the need for documentation.

In fact, complex decisions often require better records.

Where capacity is questioned, records should show what decision was being considered, what support was provided, what communication needs were addressed and why further assessment was necessary.

Where a formal decision supporter is involved, the relevant authority should be identified.

Where somebody makes a decision involving significant risk, the record should demonstrate that relevant information was explained rather than merely note that the person “chose against advice”.

This is not defensive paperwork.

Good records preserve the reasoning behind a rights-sensitive decision and allow future staff to understand why a particular approach was agreed.

They also reduce the risk of repeated capacity assessments simply because a new professional becomes uncomfortable with an earlier decision.

Digital records need to make decision-support information visible without over-labelling people

Digitalisation creates an opportunity to make important legal and communication information more accessible across services.

A care record could identify an active decision-support arrangement, communication requirements, an advance healthcare directive or the location of relevant documentation.

But digital design can also create risk.

A prominent label stating “lacks capacity” may encourage staff to apply an outdated blanket assumption across every decision.

Systems should therefore record decision-specific information carefully.

The stronger model captures what support the person needs, what authority exists and what decisions it covers.

Organisations considering similar digital changes can use the Digital Transformation Readiness Assessment to examine whether digital processes, workforce capability and governance are aligned. Technology should reinforce supported decision-making rather than hard-code paternalistic assumptions.

Workforce competence will determine whether legal reform changes practice

Legislation alone cannot create supported decision-making.

Frontline workers, nurses, doctors, therapists, managers and social care staff need confidence applying the principles in everyday situations.

They need to recognise the difference between supporting a choice and steering somebody towards the preferred answer.

They also need to know when a formal capacity assessment is actually required.

Over-assessment creates its own problem. If every disagreement generates a capacity assessment, the legal framework becomes a mechanism for challenging unpopular choices.

Training should therefore focus on judgement as much as legal terminology.

Supervision and reflective practice can help teams examine situations where safety, family expectations and individual rights pull in different directions.

Supported decision-making also needs protection from coercion

Promoting autonomy does not mean accepting every apparent decision at face value.

A person may be influenced by threats, financial dependence, family pressure or fear.

This is particularly important where somebody else stands to gain financially or controls access to the person.

Consent needs to be voluntary.

If professionals suspect undue influence, the issue may require safeguarding attention as well as decision-making support.

This is why safeguarding and human rights remain connected with autonomy.

Respect for choice should never become an excuse to ignore coercion.

Quality assurance should examine whether people actually exercise choice

Organisations can comply with policies on paper while everyday practice remains paternalistic.

Quality assurance therefore needs to look beyond whether consent forms have been signed or capacity policies exist.

Useful questions include:

• Do people make ordinary daily choices without unnecessary staff approval?
• Are communication supports actually available when decisions are discussed?
• Are family members being treated as advisers or incorrectly as automatic decision-makers?
• Are restrictions individually justified and reviewed?
• Are formal decision-support arrangements understood accurately?
• Can staff explain how a person’s will and preferences influenced a difficult decision?

That connects decision-making rights with evidencing person-centred care.

The relevant evidence is not simply documentation. It is whether people retain real influence over their own lives.

The transition away from wardship remains important

The commencement of the Assisted Decision-Making Acts also ended the old wardship system for new cases and created a pathway for existing adult wards to have their arrangements reviewed.

The original legislation envisaged reviews being completed within three years of commencement in April 2023.

By 2026, substantial work had been completed but not every case had concluded, leading Government to bring forward legislative amendments allowing courts greater flexibility where reviews remained outstanding.

This should be understood as a transitional implementation issue rather than a reversal of the reform.

The policy direction remains away from blanket wardship and towards decision-specific, proportionate supports.

For older people historically subject to broad substitute decision-making, that transition is significant because it creates an opportunity to restore decision-making authority wherever possible.

International learning lies in separating support from substitution

Many countries are grappling with how legal systems should respond when adults experience cognitive impairment or difficulty making complex decisions.

Ireland’s particular legal architecture is shaped by its Constitution, legislation and health and social care institutions and cannot simply be transplanted elsewhere.

But its reform highlights several internationally relevant principles.

Capacity should be decision-specific rather than attached permanently to a diagnosis. Support should precede substitution. Formal authority should be proportionate and clearly bounded. Advance planning should allow people to retain influence over future decisions. Families should remain important without acquiring automatic control.

Most importantly, autonomy must remain relevant even where care needs increase.

The transferable lesson is that dependence on support should not become dependence on somebody else’s preferences.

The next stage is cultural rather than legislative

Ireland now has the core legislative architecture for a substantially different approach to adult decision-making.

The more difficult task is making that approach normal.

Services need to move away from shorthand such as “the family has decided”, “the resident lacks capacity” or “it is safer if we do it this way”.

Those phrases may conceal complex assumptions.

The stronger questions are more specific: What decision needs to be made? What does the person want? What support could help? Is capacity genuinely in question? Does anybody hold formal authority? What is the least restrictive approach? How will the decision be reviewed if circumstances change?

When those questions become routine, supported decision-making moves from legal compliance into the culture of care.

Conclusion

Ireland’s Assisted Decision-Making framework represents a profound shift in how older people’s autonomy should be understood. The central principle is simple but demanding: needing care, developing dementia or requiring help with some decisions does not transfer ownership of a person’s life to professionals, providers or family members.

The practical implications extend far beyond formal capacity assessments. They affect consent to treatment, everyday nursing-home routines, home-support practice, discharge planning, financial decisions, relationships, risk enablement and advance planning. They also require services to understand formal decision-support arrangements accurately rather than treating every supporter or relative as having unlimited authority.

The strongest implementation will combine accessible communication, skilled staff, proportionate risk management, good records, reliable verification of legal authority and genuine respect for will and preferences. It will also recognise that supported decision-making sometimes means accepting choices that others would not make.

Ireland now has the statutory architecture to move decisively away from blanket incapacity and paternalistic substitution. The next test is operational: whether an older person receiving increasing levels of support still experiences themselves as the person directing their own life.

That is the real measure of autonomy. Rights are not protected simply because legislation exists. They are protected when everyday systems, relationships and decisions consistently leave the person with as much control as possible.