Tina Aitken, who lives with multiple system atrophy, put the issue plainly: “I didn’t choose to be disabled. My husband needs respite from me, and I need respite from him.”

A few weeks ago, in Ludlow, Shropshire, the adult day service she attended closed because the numbers no longer made sense. Helena Lane Older People’s Day Service had five participants, operated three half-days a week, and had a forecast net annual cost of nearly £170,000. On paper, the decision was defensible. The service was underused, expensive to sustain, and located in a council facing severe financial pressure.

The figure sounds large until you ask what it was supporting: five people with complex needs, five carers who had some regular respite, and five households with a small but steady point of support in the week.

The council’s accounting was not wrong. It counted what the day service cost and never asked what it was preventing.

What We Miss When We Call It Day Care

The term “day care” does more than describe a service. It shapes how that service is valued.

Historically, the phrase meant care provided during the day, as distinct from overnight or residential care. But applied to a person with a disability it suggests supervision rather than support, occupation rather than participation, a place people are sent rather than a service that helps households continue. It can be treated as discretionary, peripheral, nice to have, rather than as part of the fragile infrastructure that helps people remain at home, gives carers predictable respite, and reduces pressure elsewhere in the system.

The language is not cosmetic. If Helena Lane is understood as “day care,” its closure looks like the loss of a small, underused service. If it is understood as community-based support, the question becomes larger. What happens when the regular supports that hold people and carers in place are quietly removed?

The Models Are Already Changing

There is evidence of a different starting question, and the question shapes everything built afterward.

Of the models worth watching, Japan’s goes furthest, because it doesn’t just rethink the day centre it rethinks the person inside it. Aoi Care in Fujisawa sits within Japan’s broader movement toward community-based integrated care, where support is organised around housing, medical care, long-term care, prevention, and daily living. Its importance lies in the question it asks of people: not only what they need, but what they like, what they can still do, and what role they can still play.

The distinction is need versus capability, recipient versus contributor. It is the hinge this piece turns on. A person only ever assessed for deficits will only ever be offered compensation for them. A person also asked what they can still do, and still want to do, is being treated as someone with a future, not just a condition.

The Inter-American Development Bank has made a similar case at the systems level across Latin America and the Caribbean. Day centres built around the wellbeing of older people and caregivers, with person-centred care, ageing at home, and relief for families at the centre.

Neither model transfers wholesale, a system built around Shropshire’s geography won’t look like one built around Fujisawa’s. But both start from the same place. The day isn’t empty time to be managed, but part of a life that still needs rhythm, choice, relationship, and rest.

Neither has yet had to defend that philosophy to a council facing a forecast shortfall and a service running at five participants. Good language and good design don’t, by themselves, survive a finance committee. Something has to change in how the cost is counted, not only in how the service is described.

The Future Has to Protect the Ordinary Day

The future is not “day care” by another name, nor one model copied across countries. It is care that is local, relational, skilled, and serious enough to protect the ordinary shape of a day.

That means seeing adult day services not as attendance, but as support not a place to pass time, but part of the structure that helps people remain at home, carers keep going, and households survive pressure without collapsing into crisis.

It also means building the accounting to match. The Shropshire report does acknowledge the risk of “escalation to higher-cost care” elsewhere in the system but that risk is never priced. Only the £169,738 gets a number; the hospital admissions and residential placements it might forestall get a sentence. A ledger that quantifies one side of a tradeoff and gestures at the other will keep closing services that are quietly load-bearing. The language matters. So does the ledger.

The question is not what replaces day care.

The question is who gets to have a day with choice, purpose, relationship, privacy, relief, and continuity in it.

A day is not a unit of care. It is the shape of a life. The test of an ageing society is whether that remains true when a person needs help to live it.

Elder abuse is often recognised by its evidence. The missing money, the unexplained signature, the hidden document, the neglected need, the change in an older person’s voice when one particular family member enters the room.

But family-perpetrated elder abuse also has an inside. It has a private story. Until we understand that story, we will continue to miss how easily harm can be made to look like care, and how easily taking can begin to feel, to the person doing it, like something close to justice.

The Good Person

Most family perpetrators do not begin by thinking of themselves as perpetrators. They see themselves as the dutiful one, the reliable one, the one who stayed. The adult child who makes the appointments, fills the prescriptions, answers the calls, pays the bills, sits in waiting rooms, and absorbs the judgement of siblings who appear only long enough to have opinions.

Some of that may be true.

Care can be exhausting. Responsibility is often unfairly distributed. One person may carry far more than others. Resentment can grow in the silence between what is given and what is acknowledged.

But resentment is not abuse. Exhaustion is not abuse. Sacrifice is not abuse.

The danger begins when sacrifice becomes a ledger

The Ledger

The ledger is rarely written down, but it is kept.

I have done more than anyone. I have given up weekends, work, sleep, privacy. I have turned up when others did not. I have carried what others refused to carry. And because I have given so much, I am owed.

That is the moral arithmetic of entitlement.

It is rarely stated so bluntly. It is softened, rationalised, made ordinary. The money is not stolen, it is used. The account is not controlled, it is managed. The older person is not silenced, they are protected. The will is not manipulated, it is corrected. The house is not claimed before death, it is preserved for the family.

The danger is not that the story is wholly false. It may contain enough truth to feel morally convincing.

A person may have sacrificed and still have no right to take. They may have cared and still be capable of control. The older person is not repayment for a difficult childhood, an absent sibling, a fractured family, or a failed care system.

Yet inside the perpetrator’s story, the older person slowly changes status. They are no longer fully a person with money, preferences, privacy, rights, and authority over their own life. They become a burden, a debt, an obstacle, an estate in waiting.

The older person is still alive, but the family has begun to think beyond them.

How Taking Becomes Fairness

Criminology also gives us useful language. Sykes and Matza described “neutralisation” as the process by which people justify wrongdoing while preserving a moral self-image.

In family elder abuse, the pattern is painfully familiar.

I had no choice. Someone had to take control. No one was really harmed. She does not need the money now. He would have wasted it. My siblings have no right to question me. I am protecting the family home. I am doing what is best.

These are not random excuses. They are the architecture that allows the behaviour to continue. The person causing harm may not experience themselves as stealing, coercing, isolating, or exploiting. They may experience themselves as correcting an imbalance no one else can see.

That is why the story matters. It is not just a mask. It is the mechanism

The Story We Must Interrupt

Family entitlement does not grow in isolation. It is made easier by ageism.

Once an older person is seen as less capable, less future-bearing, less entitled to risk, pleasure, privacy, anger, desire, or refusal, it becomes easier for others to step in and claim authority. The language may sound protective.

She does not understand money anymore. He should not be making those decisions. We are only trying to protect her.

Sometimes these concerns are real. Capacity can change. Families do face difficult decisions. But vulnerability should increase the duty to protect autonomy, not lower the threshold for taking it away.

Support should keep a person in their own life for as long as possible. Abuse begins when support becomes substitution, and substitution becomes control.

This is why we need to ask better questions. Not simply, “Is there family involved?” but, “What kind of power is being exercised here, and in whose interests?”

Who speaks in the room? Who answers before the older person can respond? Who controls access to money, documents, phones, visitors, and appointments? Who benefits from decisions made in the name of protection? Who describes the older person as confused only when they disagree?

These questions are uncomfortable because they ask us to look at the responsible child, the helpful relative, the person who shows up, and ask whether showing up has become a way of taking over.

Most family perpetrators do not need to believe they are cruel.

They only need to believe they are justified.

That is where the harm begins.

Not always with hatred. Not always with greed. Sometimes with a story persuasive enough to make taking feel like fairness.

And that is the story we must learn to interrupt before the older person disappears inside it.

I sit on aged care boards in Australia and Canada. Inside the boardroom, the conversation is about standards, staff conditions, recruitment, regulation, and the daily challenge of keeping services safe and sustainable in an increasingly demanding social and political environment.

What is often not understood is how little room there is to manoeuvre. Every decision touches a resident, a worker, a family, or the quality of a person’s final years.

Care is human

One story we hear often is that aged care is expensive because someone, somewhere, is being inefficient. Tighten the management, cut the waste, and the numbers will come good. It lets us believe the cost is an accident rather than a feature.

Care is expensive because care is human. It is people, time, and the hours spent doing things that cannot be sped up. It is buildings maintained, meals prepared, rooms cleaned, medications supervised, clinical needs met, and a thousand small continuities that hold a resident’s day together.

You cannot automate dignity.
You cannot batch-process someone’s life.

And before any of this reaches a balance sheet, an enormous amount of care has already been given for “free.” But nothing is free. A daughter is managing medications after work. A husband is lifting his wife in the night. The real cost of aged care does not appear in a budget because families have already absorbed it, in their evenings, their savings.

The uncomfortable truth is that good care costs money.
The more uncomfortable truth is that poor care costs even more.

We do not always see that invoice because it is paid elsewhere: by residents whose needs go unmet, by families carrying grief and guilt, and by workers stretched beyond what is reasonable. Many people inside the system are trying hard. But even with that effort, the system still fails too many of those it was built to serve.

Regulation in aged care exists for good reasons. Safety and oversight are paramount. But regulation is often built in response to failure. Something terrible happens, public outrage follows, and a new layer of rules arrives. Each layer may make sense on its own. The problem is that the layers accumulate, and rarely simplify what came before.

The sector is too often regulated in the shadow of its worst failures. Good providers carry compliance burdens designed for poor providers.

This is where reform has to be smarter. Scrutiny should follow risk. Trust should follow evidence. Providers that demonstrate sustained quality should earn a regulatory dividend: more proportionate oversight, stronger public recognition, and more freedom to invest time back into residents and staff.

That is not deregulation. It is intelligent regulation.

Aged care reform cannot only be about preventing the worst. It must also make the best easier to sustain.

Complexity

The complexity has changed, not just the count. The people entering aged care are living longer, often with dementia, disability, frailty, and several serious conditions at once. Aged care is also absorbing the overflow from everything around it: hospitals that need beds, disability systems under pressure, housing that is insecure, and family support systems already at their limits.

Many people arrive because the family member, partner, friend, or neighbour who cared for them for years has reached the limit of what they can carry.

This is why aged care cannot be understood as a simple question of beds, budgets, or efficiency. It has become the place where multiple system pressures arrive at once.

When everyone carries the strain

Providers carry financial and regulatory risk. Workers carry moral and physical risk, the kind that follows them home. Families carry it too: the years of caregiving before, the guilt of handing over, and the grief that never quite resolves.

Governments carry political risk, which is real but usually recoverable. Older people carry the greatest risk of all because they live inside the consequences of every decision the rest of us make.

It would be easy to end by pointing a finger. That would not be honest. I have sat in enough rooms with people trying hard to do the right thing, and met enough families who gave years of themselves before we ever met them, to know that blame is too simple.

The harder question is what the system makes easier, and what it makes harder.

At present, aged care asks providers to absorb growing complexity, carry rising expectations, withstand public suspicion, meet expanding compliance demands, and still deliver care that feels human. For good providers, the incentive is often moral rather than structural: do the right thing because it is the right thing.

That is not enough.

Aged care is not straining because one group failed. It is straining because we have placed too much of society’s unfinished work onto one sector, and onto the families behind it, and then acted surprised when the model began to buckle.

The question is not only who should pay, who should regulate, or who should be blamed when things go wrong. The question is whether we are willing to build a system where good care is not just expected, but made possible to sustain.

Mother’s Day is complicated for a lot of us.

For me it carries the particular weight of someone who is no longer here. My mum, Billy, died three years ago. Ours was a relationship that spanned oceans and had its own specific tenderness. She was in Australia. I was in Canada. I called her twice a day, sometimes more. That was just how it was.

In the last three years of her life, she lived in residential care. She didn’t end up there. She chose it in many ways. She didn’t want to be a burden on her children. She was tired and lonely, and the house she and my father had shared for decades had become something she couldn’t quite live in anymore. Still full of him and empty of him at the same time. His clothes, his toothbrush, his office full of books and bits and pieces.

She walked into the facility on her own two feet and felt, I think, something like relief.

The fear underneath

Ask a room full of people who want to spend their final years in a residential care facility to raise their hand. Nobody really moves. It doesn’t matter the age of the room, the country, whether the people in it have parents in care or parents long gone. The hands usually stay down.

When I ask why not, the answers come quickly. Loss of independence. Poor care. The cost, which in most countries falls on families in ways people don’t anticipate. The fear of becoming a burden. These are real concerns. They are not irrational.

But there may be other reasons.

When I listen more carefully, something else is there. A fear that doesn’t have a clean name. Something closer to: I don’t want to disappear. I don’t want to walk through that door and become someone whose story is essentially over. A resident. A bed number. Someone who used to be a person and is now a set of needs.

That’s not a fear of a place. That’s a fear of erasure.

What the numbers actually say

And yet the reality is less catastrophic than most people imagine. About 56% of people turning 65 will develop a condition requiring some assistance. But when you look specifically at paid formal care, only around 4-5% will need it for longer than five years. It is not the overwhelming fate most people picture. Most people will need some help. Very few will need years of intensive care.

The real risk isn’t the scale of need. It’s arriving at that need without having ever talked about what you actually want.

Many of us assume the government or health system will cover most if not all costs. This is not the case even in countries such as Japan and Germany that have a system of insurance. Many families arrive at these decisions in crisis, a fall, a diagnosis, unprepared making choices that will shape the rest of a person’s life.

That’s not just a failure of planning. It’s a failure of imagination. Schools teach financial literacy. Workplaces offer retirement planning. Almost nowhere do we sit with people and ask what it would mean for them to remain themselves if they needed help.

The conversation we’re not having

Because that’s the real question underneath the fear of erasure. Not home versus facility. Not this care setting or that one. What conditions allow me to still be me.

The best care environments know who someone was before they needed help. They hold that. The worst ones, in my view, reduce a person to their diagnosis and forget the rest. Independence isn’t just about where you live. It’s about whether you still feel like yourself.

Almost everything written about residential care frames it as a last resort. A defeat. The place you end up when everything else has failed. My mother’s experience didn’t fit that frame. She knew who she was. She knew what she needed. And I think, I hope, it gave her something in those last years she wouldn’t have had otherwise. Because sometimes the loneliness of staying home is its own kind of loss.

These are the questions worth sitting with, alone or with someone you trust.

What makes you feel like yourself, the routines, objects, relationships that are non-negotiable to your sense of who you are.

What are you most afraid of, and is that fear about a place, or something deeper. Losing control. Being forgotten. Becoming a burden.

What role do you want your family to play, and in what way. This one is harder than it sounds.

What would you want people to know about you if you couldn’t tell them yourself, your history, your preferences, what makes an ordinary day feel good.

Not everyone will make the same choice my mother with support from her children made. That’s exactly the point.

The goal isn’t a particular answer. It’s that the answer belongs to the person whose life it is, made from clarity, not crisis; from values, not fear; from an honest reckoning with what it means to live well, all the way to the end.

We are not just struggling to fund long-term care.
We are deciding who gets it and who does not.

Across countries, the cost of long-term care has reached a point where many people who need complex care simply cannot afford it. In Australia, for example, the basic daily care fee alone absorbs most of a single Age Pension, before accommodation costs are added, making entry into residential care financially impossible for many.

Those who miss out are often just above eligibility thresholds and far below affordability. Too “wealthy” to qualify for public support. Too poor to pay privately. When faced with the cost of care, they cope alone, rely on family, or wait until crisis makes care unavoidable.

Two Paths Into Care

Reflecting on experiences of my family and those around me, there now seem to be two paths into later-life care.

The first path: care that arrives early
The path is open to those who can afford it.

They access care earlier
They supplement gaps
They buy continuity.

Support arrives before collapse.
Choice remains possible.

The second path: care that arrives late
The second path narrows quickly.

For those who cannot afford care, entry is delayed until a catastrophic incident such as a fall, a hospital admission, or caregiver exhaustion. Care arrives late, often in its most intensive and expensive form. Decisions are rushed. Options are limited.

Many never make it onto this second path at all, remaining at home without adequate support and relying on unpaid care that stretches thin.

Governments increasingly promote living in the community with support. But when early and adequate supports are not available or cannot be put in place, care is carried by families and unpaid carers until crisis forces system entry.

Long-term care systems tend to intervene late. Eligibility rules and long waiting lists delay access to support that could otherwise be provided earlier. As needs escalate, care becomes more intensive and more expensive. This is not a failure of individual planning, but of system design.

Residential care is not the right pathway for everyone, and it should never be the default. Many people can and should be supported at home with the right mix of housing adaptation, community services, and clinical care. This can only happen in some countries and within certain systems.

But for some, residential care is not optional. It is the only setting capable of providing continuous supervision, safety, and complex support. When that care is unaffordable, people are not exercising choice at all.

Why Some Systems Leave Fewer People Behind

Countries often described as having the “best” long-term care systems are not cheaper; they are designed so affordability does not decide access.

• In the Netherlands, long-term care is a universal social insurance entitlement under the Long-term Care Act (WLZ). Access is based on assessed need rather than income or assets. Support often begins earlier, frequently at home, and increases gradually as needs change. Cost is pooled across the population and across time, rather than concentrated at the moment people are least able to absorb it. Care is expensive at a system level, but rarely catastrophic for individuals. That alone prevents care-based class formation.

• A similar logic operates in the Nordic countries, including Sweden and Norway. Long-term care is treated as a municipal public service rather than a residual welfare program. Home and community care are the default, out-of-pocket costs are capped and predictable, and paid care workers are central to delivery. Inequality persists, but it does not determine whether care arrives at all. People do not need to be wealthy to access support before needs become overwhelming.

• In Germany, mandatory long-term care insurance covers the entire population. People are entitled to either services or cash benefits, with coverage beginning well before severe dependency. Risk is pooled across working life rather than loaded onto individuals late in life, reducing the familiar trap of being “too rich to qualify and too poor to pay.”

• In Japan, universal long-term care insurance applies to everyone over 65, and to some under 65 with age-related conditions. Care is separated from medical treatment and emphasises home- and community-based support. Entry is early and incremental, spreading cost over time and reducing the need for crisis-driven care. Despite intense demographic pressure, people are not priced out of basic support.

Across these systems, the pattern is consistent. The strongest long-term care systems are not cheaper. They are better designed. They pool risk early, invest before crisis, spread cost across society rather than onto families, and treat care as infrastructure rather than a last resort. Most importantly, they refuse to let affordability decide who gets care. That is why they do not quietly generate a class system in later life.

What This Reveals

When people miss out on care because they cannot afford it, we are not witnessing demographic inevitability. We are witnessing a choice about who is worth supporting, and when.

Long-term care makes this visible because it sits late in life, where unmet need is easier to ignore. People go without quietly. Families absorb the strain privately. The absence of care rarely generates headlines.

But absence is not neutrality.
It is a decision.

The question is no longer whether long-term care is expensive.
It is how many people we are prepared to leave without it, and what that says about how we value ageing lives.

I was about ten when my brother Paul became very ill with three brain tumours.

I can still see us in that room at the house called Drambuie in Flinders Bay, Augusta — the soft light filtering through the venetian blinds, the stillness inside, and the distant sound of my siblings laughing on the beach. I remember sitting beside Paul as he lay on the bed, feeling scared because I knew, he was really sick.

The four-hour trip home with five children and a dog must have been torturous for my parents (Billy and John). Then came the many journeys to hospital, the surgeries, the long recoveries. Overnight, I assumed the role of protector at school, and of the ice-cream supplier when Paul lost some of the 180 pills he had to take each month. He was my little brother, and I loved him dearly.

The images of that time are crystal clear.

Looking back, I realise that moment held the essence of care and a relationship I would hold dear to me for the rest of our lives — the quiet reciprocity we had as siblings which would endure throughout his life. One person vulnerable, another holding space; both changed by the exchange. Paul taught me that caring is not a one-way act of giving, but a relationship of becoming. There were many times when the situation was reversed, I lean into him.

The Reciprocity We Rarely Name

Most caregiving policies and campaigns focus on the giver: the hours worked, the economic cost, the burnout. These are real and urgent, but they tell only half the story.

The other half is what happens between people — the mutual shaping of a relationship that care brings. When someone allows you to care for them, they offer trust, vulnerability, intimacy, and meaning. They reveal a truth we rarely name: that care is co-existence.

It is never perfect and never easy. My brother lifting my father off the floor after he fell out of bed. Me feeding Dad in the last days of his life — an omelette my mother had made at the hospice, her way of bringing home to him. Sitting with her and talking about nothing, which was everything.

These moments are ordinary and sacred — the quiet choreography of family care that rarely finds its way into policy papers.

Policy still divides the dyad: one person assessed, the other supported; one documented, the other almost invisible.

Funding follows categories — formal, informal, paid, unpaid — rather than the relationship itself. And so caregiving is treated as labour to be managed, rather than human connection to be sustained.

The Economy of Love and Loss

Often in times of diminishing life, there is an unmeasured, human side of caregiving — a trade in emotion and attention that holds people together when everything else falls away. It is often not beautiful. It can be messy and exhausting — stubborn kin and equally stubborn family, each trying to hold on to some sense of control. It was painful for me.

But that kind of presence carries a cost in today’s world. Few policies make space for it. Families are asked to care while keeping jobs, raising children, and managing household expenses that never account for lost income or time. Many leave work altogether, taking on full-time care — not because they have to, but because they want to do the best they can for someone they love.

Most economic frameworks still treat care as non-productive contributing very little to the nation’s wellbeing. Yes, there are numerous studies that measure the cost of caring and the contribution to health systems, but they rarely shift the status quo.

If policy is to mean anything, it must begin by recognising that care is productive. It sustains people, communities, and entire systems of health and welfare. In countries that have legislated caregiver leave, pension credits, or flexible work arrangements, the message is clear: care is not a private act of endurance — it is a shared public good.

When Relationships Change Shape

Decades later, I would see care through another lens — watching my family adapt as a loved one’s memory faded, or personality shifts under the weight of cognitive decline.

These are not stories of loss alone; they are stories of transformation.

When the person you love no longer remembers your name, the relationship doesn’t end. It changes language. It becomes touch, tone, ritual. Love learns to adapt, but it is difficult to see it at the time.

You search — we searched — for ways to help Nina (my mother in law) remember happy times from her life, surrounded by those who loved her.

She was such a character.

Beyond the binary of giver and receiver

In times of economic restraint and political fatigue, caregiving risks being reduced to budget lines — respite hours, subsidies, caregiver credits. These are necessary, but insufficient. They treat the symptom, not the structure. The deeper question is whether policy can create an environment where relationships endure:

Designing care systems that respect the bond, not just the body.

Providing joint assessments and relational respite — where both people are seen and supported together.

Building income and social protections that recognise caregiving as civic contribution.

Embedding flexibility into work, housing, and community design so that care can be woven through ordinary life.

When we care for the relationship, we strengthen both sides of the equation — and by extension, the society that depends on them.

The truth about care

Caregiving is often described as selfless. I don’t think that’s true. It’s profoundly mutual. The person cared for gives something irreplaceable — the invitation to stay close when life grows fragile. The caregiver, in turn, learns to see beyond utility — to measure value in presence rather than progress.

That reciprocity is what policy must learn to honour. Not with thank-you messages or token grants, but by embedding care as a public value — as vital as education or infrastructure.

Care is not what we do for others.
It’s what we learn with them — about love, loss, and what remains.

Let’s move beyond recognition toward redesign — not of caregivers themselves, but of the systems that fail to see the relationship. Policy should finally reflect what every caregiver already knows: that care is not a burden to be managed, but a relationship that makes us human, even in the hardest times.

The caring relationship is perfectly imperfect — real and raw, sad and sometimes tragic. Yet I would never trade those times of being a sister to Paul, and daughter to John and Billie.

“I don’t lie awake worrying about my own death. I lie awake worrying about what will happen to my son when I’m gone.”

I heard these words from a mother whose son, now in his fifties, has lived with significant disability since birth. Although he has a regular program of activities in the community, he requires substantial assistance in activities of daily living. She is 82. He is 54. Their relationship is not only mother and child—she is also his primary carer. She is tired in a way that sleep cannot fix. And since her husband’s death the question she carries has grown heavier:

This is a question rarely spoken aloud, yet it sits in the marrow of many older parents who have spent a lifetime caring for their now an adult child with a disability. Their worry is not only about continuity of care but about continuity of love, dignity, and safety. Systems may provide services. They may even provide housing or income support. But they cannot replicate the vigilance, the fierce advocacy, or the intimate knowledge that comes from decades of being the one constant presence.

When Ageing Parents Begin to Falter

The fear is twofold.

• First, the unspoken dread of absence. Parents live with the certainty of their own mortality. What they cannot know is whether their child will be seen, valued, and protected when they are no longer here.

  Will someone fight for them in the hospital? Will someone ensure their meals are nourishing, their routines respected, their vulnerabilities safeguarded? Will anyone stand by them with love—not pity?

• Second, the fragile interdependence. If an older parent begins to need care themselves, the whole structure begins to unravel. Services are not designed to support the pair together. Instead, they are separated — an older adult into aged care, the son or daughter into a disability service if one exists, or perhaps into the care of extended family if it does not. But what if neither is available?

In many cases, the adult child remains at home not by choice, but because no adequate alternatives exist to support them in the community. This separation is not the result of neglect by families, but of systems unprepared for lifelong reliance. What was once a fragile arrangement of necessity fractures into two isolated lives, each poorly supported.

The Fault Line Between Disability and Aged Care

When I worked in the disability sector in Western Australia in the 1990s, these questions and fears were voiced often. Thirty years on we are still having the same conversations. Parents spoke with both fierce pride and quiet exhaustion. Even then, it was clear that community living could be a fragile arrangement for many, sustained only by family devotion and constant advocacy. There has been progress since those years, but the fundamentals remain unchanged: funding is insufficient, long-term planning is precarious, and the future for many families feels uncertain at best.

In Australia today, adults with severe disability find themselves at the intersection of two systems that rarely connect. The National Disability Insurance Scheme (NDIS) was never designed to be lifelong—eligibility effectively ends at 65. After that, aged care becomes the default pathway. But aged care services are often built decline, not on sustaining autonomy, inclusion, or lifelong supports.

This transition is not merely bureaucratic; it is profoundly destabilising. Families describe it as the ground vanishing beneath them. Decades of tailored supports can disappear overnight, replaced by a patchwork of services that fail to meet complex needs. Parents’ worst fear—that their child will be left vulnerable—is too often realised.

Glimpses of a Different Way

There are, however, glimpses of what better could look like.

• In Australia, Youngcare has fought to keep younger people with high support needs out of residential aged care, developing specialist housing projects in Brisbane and Sydney that combine accessible design with 24/7 care. Families can be assured their adult children will not be placed in facilities built for frailty, but in homes designed for independence and dignity. Alongside this, integrated care pilots in rural Queensland and New South Wales are testing new ways of linking health, disability, and aged care — small in scale, but important signals that continuity matters.

• In the Netherlands, cooperatives like DeSeizoenen operate intentional communities where adults with intellectual and physical disabilities live, work, and age together. Staff, families, and volunteers form a shared network of support, so as residents grow older their environment adapts with them — additional nursing, therapies, or daily living supports are added without forcing relocation. Parents know their adult child will remain in a familiar home, surrounded by trusted relationships.

• In Germany, initiatives like WOHN:SINN – Bündnis für inklusives Wohnen are showing what it means to build ordinary lives, not institutions. In Berlin and other cities, adults with and without disabilities share apartments in purpose-built housing, supported by professional teams when needed. The model is simple but powerful: people cook together, manage households together, and live as neighbours, not clients. Care adapts as needs change, but the anchor is belonging — a home where disability does not mean exclusion. These projects are small in scale, but they carry a big lesson:

These models differ, but all share one principle: continuity of care across the life course, instead of abrupt disruption.

A Question We Cannot Leave to Chance

The truth is stark. Longevity may be humanity’s great achievement, but it is only meaningful if it brings a quality of life worth living. For ageing parents of adult children with disabilities, the harder question is this: who will advocate for their child when they are no longer here?

If longer lives are to mean better lives, then this must be part of the story we face together. Ageing is not only about our own independence, but about the ties of care and responsibility that stretch across generations and abilities.

How do we build systems of care that endure long after a parent’s last breath?

The instant a name becomes a role. When the system calls you ‘the caregiver,’ the person behind it quietly begins to vanish

We often recall when caregiving begins — but rarely do we speak about when it ends, and what that ending takes with it.

It’s about the silence that follows, the identity you never chose, and the question no one asks when the role is over.

The Moment the System Renames You

One day you are their daughter, son, spouse, friend or some other significant other person in their life.

The next, you are “the caregiver” or in some countries ‘the carer’.

Has that happened to you?

And when it ends… who are you then?

It rarely happens in a single moment.

There is no announcement, no formal change of title.

In the clinic or the hospital corridor, a nurse says, “The caregiver will need to sign here.”

It’s said so casually, you almost do not notice.

But over time, that label may replace your name.

To the health system, you are no longer “John’s daughter” or “John’s wife.”

You have a role — and a function in a process that you have little or no control over— carrying the invisible weight of keeping someone alive, comfortable, or safe.

Often, you do not choose this role. The decision may have been made by circumstance, by lack of other options, or by a system that quietly assumes – or outright expects – that family will step in (Organisation for Economic Co-operation and Development [OECD], 2023). Sometimes the pressure is unimaginable.

Your own life — the shape of your days, your sense of self, the plans you once held for the future — shifts around it. And while many embrace caregiving as one of the most important acts they will ever perform, there is often tension between that deep commitment and the cost it exacts.

And while the title ‘caregiver’ can carry pride, it can also flatten you. It may reshape the life you once envisioned — your work, your friendships, your own needs — into a single identity defined only by someone else’s care. That identity may last a day, a week, a month, or years… and at times, it feels as though there will never be an end.

Inside the Care Machine

Health and social care systems are built on the quiet assumption – and at times, the very vocal expectation-that family will step in (and the definition of ‘step in is ‘broad’). This isn’t said as criticism — it’s simply how the model is built.

The “care model” often depends on an unpaid army of daughters, sons, spouses, siblings, and friends who do everything from managing complex medications to providing intimate personal care (Rocard and Llena-Nozal, 2022).

Once you are labelled “the caregiver,” the system slots you into its workflow.

Your name appears on the discharge instructions.

It is your phone that rings at midnight.

Your time, energy, and health are treated as resources to be drawn on — without a budget, without a contract, without the protections of an actual job.

In this framing, you are part of the care infrastructure, and often (not always, but often) without the rights, support, or recognition that other essential workers are afforded.

And when that chapter closes, the system steps away. There is no offboarding. No transition. No plan for the person left behind.

When the Role Ends — and the Loss Multiplies

The end often comes suddenly - even when you’ve been expecting it.

One day you are managing medications, answering calls from the home care nurse, and chasing down specialist appointments. The next, the equipment is collected, the care team has moved on to other patients, and the phone falls silent.

The absence is both physical and emotional. You have lost someone you love. But you have also lost the role that defined your days, your purpose, and — in the eyes of the system — your value.

And unlike the start of caregiving, there is no preparation, no ceremony, no official acknowledgment that the role has ended.

Just silence, and the question: Now who am I?

It’s a loss felt not twice but many times over — yet in most policies and programs, only one of those losses is ever seen, leaving the others unacknowledged and unsupported.

The Gap No One Plans For

There is some preparation - however imperfect - for starting caregiving.

You might receive a home safety assessment, some basic training in lifting or feeding, a handout on managing medications. And in some countries there is formal training and support for caregivers.

But there is almost nothing to prepare you for the end.

• No guidance on how to fill the hours that suddenly open up.

• No debrief with professionals you have been working alongside for months or even years.

• No conversation about your own health — which, after years of disrupted sleep, stress, and physical strain, is likely worse than when you started.

And for many, this was never a role they sought. The disruption to work, relationships, and personal aspirations can be profound — even when the role is embraced out of love or duty. The end brings not only grief, but also the reckoning with how much life was put on hold. This is not about age either and our aspirations for the future.

Bereavement leave, if it exists, might give you a few days off. But it does not address the slow unravelling of identity or the challenge of re-entering the workforce when your skills - though sharpened by caregiving - don’t match the job titles on offer. Or the undeniable exhaustion and fatigue that weighs on you like a heavy grey cloud.

In public health, we talk about caregiver burden while the role is active.

We rarely talk about caregiver fallout — the period after the role ends, when the system is finished with you, but you are far from finished with what caregiving has done to your life.

Some caregivers become advocates-as did Freda Draper when I was involved in Carers Western Australia (WA) in the 1980s. Freda built much of the early carers’ movement and all of her five feet of determination would challenge any government to take on the role of a carer. She started carers support groups where we would gather over a cup of tea to share stories and problems. Freda didn’t recognise policies or protocols; she simply volunteered driving carers around into her eighties. Never mind the insurance or occupational health and safety issues!

Rights, Recognition, and Why Legislation Isn’t Enough

Formal recognition of caregivers’ rights gained momentum in the 1990s in the UK, with smaller but notable steps in other countries. In the UK, this recognition has been shaped by several key laws.

The Carers (Recognition and Services) Act 1995 gave carers the right to request an assessment of their ability to provide care, requiring local authorities to consider whether they could continue caring and what support they might need. This was strengthened by the Carers (Equal Opportunities) Act 2004, which ensured that a carer’s right to work, undertake education, and have leisure time were considered during an assessment, and placed a stronger duty on local authorities to inform carers of these rights. The Carer’s Leave Act 2023, requires UK employers to provide up to one week of unpaid leave per year for employees caring for a dependent with long-term care needs.

If caregivers are part of the essential workforce — and they are — then their rights, health, and future should matter as much as the person receiving care.

That means recognising both active caregivers and post-caregivers in policy:

• Guarantee access to mental health and grief support.

• Create flexible pathways back into paid work.

• Ensure ongoing healthcare for the caregiver’s own needs, not just those of the person they looked after.

• Build in formal closure conversations that acknowledge the role’s end and its impact.

Some countries are beginning to show what is possible with legislation. But legislation alone is only the framework — it must be matched with funded programs and practical support.

In Scotland, the Carers (Scotland) Act 2016 gives carers a legal right to an Adult Carer Support Plan that can extend beyond the caring role, including respite and help with re-entering work.

In Australia, the Carer Recognition Act 2010 formally acknowledges carers, and national programs such as the Carer Gateway provide bereavement counselling, financial advice, and peer support after the caring role ends.

In Finland, municipalities recognise and support informal caregivers through agreements under the Act on Support for Informal Care (2006). After an individual needs assessment, caregivers can receive a care allowance and services such as respite and health checks. Around 47,500 people benefit from this support — a shift from invisibility to formal recognition (Mikkola, 2022).

In Thailand, community-based Long-Term Care Funds — jointly financed by local governments and the National Health Security Office — support volunteer and family caregivers, and in some regions link former carers to paid community health work or peer support groups (Khongboon et al., 2021).

These examples prove it can be done — but they remain the exception, not the rule. And while legislation has led to progress, its aims have not been realised because of a lack of funding.

Because here’s the truth: caregiving is not just a role - it’s a relationship between two human beings, sometimes forged in love, other times out of necessity.

When it ends, the loss is not just personal, it’s structural. And the silence around that is a failure of policy, of practice, and of imagination.

Closing Without Erasing

One day you are simply her daughter, son, spouse, friend.

The next, you are “the caregiver.”

And when it ends… who are you then?

Health systems may never ask that question.

But we should.

Because the answer isn’t just about personal healing — it’s about how we value people beyond the role they play, how we carry forward the skills and resilience forged in care, and how we close a chapter without erasing the person who lived it.

For every caregiver, past and present, the ending deserves more than silence. It deserves recognition, support, and the space to become someone new — while carrying forward who you have always been.

References

Mikkola, T. (2022). Act on support for informal care of Finland [English summary]. Eurocarers. https://eurocarers.org/wp-content/uploads/2022/09/II.1-Act-on-Support-for-Informal-Care-of-Finland-T.-Mikkola.pdf

OECD (2023), Health at a Glance 2023: OECD Indicators, OECD Publishing, Paris, https://doi.org/10.1787/7a7afb35-en.

Rocard, E. and A. Llena-Nozal (2022), “Supporting informal carers of older people: Policies to leave no carer behind”, OECD Health Working Papers, No. 140, OECD Publishing, Paris, https://doi.org/10.1787/0f0c0d52-en.

Susan Steels, MSW, RSW—former LTC essential family caregiver—shared this with me after reading When No One Sees the Whole Person:
“I learned during the worst days of the pandemic that nobody is immune to bad policy. I can’t change what happened to my mom in long term care, but by telling our stories, maybe it can help others and lead to something good.”

That comment stayed with me—not just for its truth, but for its quiet refusal to be silent. And it echoed again and again in the responses to that piece.

Health systems can no longer be navigated without assistance. That’s not hyperbole—it’s what families are telling us. It’s what clinicians are admitting. It’s what policymakers can no longer deny. When no one holds the full picture of care, patients and their loved ones fall through the cracks. Routinely.

So this week’s question is not just rhetorical.

In a system that doesn’t see the whole person—
Who holds the story?
Who steps in?

The Rise—and Reality—of the Patient Advocate

“Patient advocate” is a term that carries more weight than ever. But what do we really mean by it? That answer depends on where you sit—and whether someone is sitting beside you.

We’ve made advocacy essential, yet invisible. Necessary, yet optional.

For some, it’s a professional role: a case manager post-discharge, a community link worker, or a care coordinator in a cancer program. These roles are designed to help people navigate the maze—connecting appointments, clarifying treatments, catching what falls through.

But more often, advocacy falls to those never trained for it. An adult child deciphering discharge papers at midnight. A friend chasing test results. A nurse making extra calls because “no one else will.” Or someone who knows someone who knows someone—as I did with my mum. Thank you, Jen (Jennifer G.)

So we must ask: Is this the best we can do?

Should something so vital to person-centred care be left to luck or love?
Or should advocacy be a standard feature of every care system—especially for older adults with complex needs?

Complexity, Moral Failure, and Systemic Dependency

No one should need an advocate just to survive a healthcare system—yet increasingly, they do. And not because the individual is failing.

In fact, the very existence of patient advocacy is often used to mask system failure. If someone has an advocate, the system appears to function. If they don’t, the cracks are exposed—but often only after damage is done.

When health systems become so fragmented, bureaucratised, and opaque that only an insider (or a relentless, exhausted loved one) can make sense of them, we are no longer talking about complexity. We are talking about failure.

These are systems that ask too much of people in crisis—demanding clarity and coordination precisely when patients are most overwhelmed. They bounce between appointments, referrals, and unreturned calls, while vital details are lost and preventable harm compounds.

Health systems that rely on unpaid, untrained advocates to function do not just risk inequity. They guarantee it.

Who Becomes the Advocate—and at What Cost?

In the absence of formal supports, the role of patient advocate often defaults to those least equipped—and most emotionally invested.

This is not a story of heroic caregiving.

It’s a story of systems outsourcing responsibility to those with the least power and most to lose. Children stepping in as surrogate case managers. Spouses juggling their own health needs while coordinating care. Ageing parents interpreting clinical jargon for adult children with disabilities.

This invisible army takes time off work, burns through savings, and risks their own well-being to ensure someone—anyone—is paying attention.

The emotional cost is immense: life-altering decisions made without clear information or reliable support. The financial toll includes lost wages, travel, medications, and private consults. The physical burden—sleepless nights, hospital visits, burnout—goes largely unmeasured.

So the question becomes: If informal advocates are doing the work of the system, why are they invisible in its design?

But informal advocacy, however courageous, is not enough. Nor is it sustainable.

One Voice, Thirty-Nine Stories: Suresh Rajan

My colleague and friend Suresh Rajan has stepped into this role countless times—showing up when the system fails.

With lived experience spanning heart failure, cancer, diabetes, and systemic racism—and a relentless commitment to those failed by services—he speaks with the moral authority of someone who has lived, and fought, through it all.

A former economist and current disability rights leader, Suresh reminds us that policy is never abstract. It’s deeply personal. When he speaks, he speaks for the 39 people he’s advocated for in the past two years—people who, like Tim, would otherwise be lost in bureaucratic silence.

A common thread in these cases is this: patients and families are dismissed or ignored—even in crisis.

Suresh has long called for a cultural shift in healthcare, where listening is foundational. He draws urgent attention to those most often silenced: non-verbal people with disabilities, non-English-speaking patients, Aboriginal and Torres Strait Islander communities, and older adults.

One of his boldest proposals is to assign a patient advocate to every person who enters an emergency department—an advocate who is not employed by the health provider. As he writes:

“The advocate would need to be available 24/7, with access to the highest level of each hospital to escalate issues. And they must understand government policy across the full spectrum of services.”

This model is now being scoped in Perth, Western Australia—my home city. It is bold. It will face resistance. But, as Suresh says, “it is designed to give voice to those who do not have one.”

And it depends not only on resourcing, but on whether health systems are willing to treat advocates as partners—not threats.

Suresh’s call is not isolated. It reflects a growing global understanding: that advocacy is not an afterthought. It is foundational to care.

What Are We Actually Navigating?

The fact that we need patient navigators at all should give us pause. What kind of system is so fractured that people need guides just to survive it?

“Navigation” has become shorthand for everything the system fails to do well—coordination, communication, compassion.

But if we take the term seriously, what exactly are people being asked to navigate?

A tangle of disconnected pathways. Handoffs with no shared plan. Public and private systems that don’t talk to each other. Walls of forms, waitlists, and silence.

This isn’t support work—it’s survival work. The human scaffolding that keeps people from falling through.

And yet rarely is anyone accountable for the whole journey. No one holds the arc of care from hospital to home, from diagnosis to daily life.

When systems can’t even locate the patient within their own logic, is it any wonder that families turn to people like Suresh—to make the invisible visible again?

The solution isn’t more navigators. It’s a system that doesn’t need so many.

That begins with a shared record. A single point of accountability. A care plan that follows the person—not the provider. And a cultural shift: from treating navigation as charity to recognizing it as design failure.

Until then, the burden will stay on families to stitch together the very system meant to support them.

Despite growing recognition of the problem, most navigation programs remain tied to narrow disease categories—offering help for cancer, not complexity. They’re not built for people like Tim. Or for the ageing parent with diabetes and early cognitive decline. Or for the immigrant caregiver coordinating rehab, home care, and mental health across three systems.

What we need is not more disease-specific navigation. We need independent, embedded, accountable advocacy—especially for those with multiple chronic conditions who are most likely to be forgotten, delayed, or denied.

The System’s Memory—and Its Mirror

Advocates are the system’s memory.

They remember the missed diagnosis, the contradictory advice, the call that never came. They stitch together care from fragments—often with no roadmap and no recognition. But they shouldn’t have to.

Advocacy cannot be treated as a favour for the lucky few. Nor can we accept systems that function only when someone is willing—and able—to fight for the person at the centre. That is not equity. That is not care.

Advocacy is not a safety net.

It is a design signal—a sign that systems are failing at what they claim to do. And while informal advocates will always matter, they should not be expected to carry what institutions refuse to hold.

We need systems that recognise the whole person—without requiring someone else to explain who they are. That means care plans that travel. Records that connect. A named point of accountability. And trained advocates—not as substitutes for broken design, but as partners in getting it right.

To honour people like Suresh Rajan—and the countless others who step in quietly, relentlessly, and unpaid—we must embed advocacy into the architecture of care: trained, independent, resourced, and respected.

Anything less is policy by abdication.

Because in the end, no one should be lost in the system.
And no one should have to be found by one.

My brother-in-law Tim doesn’t just have diabetes. He deals with many associated complications. He has diabetic retinopathy. A hernia. He’s a liver transplant recipient.

He is also seriously immunocompromised, and he often lives with a pattern of respiratory infections. Immunisation is not a maybe, it is an essential.

And he has a calendar that looks like a patchwork of other people’s priorities—

• Endocrinology on Tuesday. Transplant clinic on Thursday.

• Ophthalmologist every three months.

• A surgeon for the hernia who sent him back to the transplant team.

• GP next week.

• Blood tests for one condition—followed by more tests ordered by another specialist at another time.

There’s no central system that connects the dots—no shared record of what’s been prescribed, what’s been missed, or what might be slipping through the cracks. And there’s little in place to anticipate problems before they escalate.

So Tim (and Jeanette)—like millions of other families living with multiple chronic conditions—is navigating the intricacies of a complex health system that was never designed to see him as a whole

Or rather, the system assumes he will.

But he’s often exhausted. And so is Jeanette.

He didn’t go to medical school. He wasn’t trained to be a pharmacist, a care coordinator, or a social worker.

He’s a loving husband, father, and grandfather—who retired early due to poor health. Once a successful manager of a large electrical company, he loved fishing and riding his very large motorbike.

He’s kind, generous, brutally honest, quick-witted, quietly brave—
and deeply tired.

And he’s far from alone.

The WHO warns that by 2025, nearly three-quarters of the global population will live with at least one chronic illness.

In a world of 8 billion people, that’s almost 6 billion individuals living with conditions that rarely come one at a time—and that rarely fit neatly into specialist silos.

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🏗️ The System Isn’t Built for Complexity

Multimorbidity is no longer the exception. It is the daily reality for more than one in three adults globally—and for over half of those aged 60 and older.

Yet most health systems remain built for a simpler time: organised around single diseases, separate clinics, fragmented budgets, and narrowly defined care pathways. This mismatch between design and reality is not new—but it is growing more untenable.

A 2023 systematic review and meta-analysis spanning 54 countries and over 15 million people found that 37.2% of adults live with multimorbidity.

• In South and North America, the rate climbs above 40%.

• Women are disproportionately affected.

• And in regions like Africa, lower reported rates likely reflect underdiagnosis rather than lower burden (Chowdhury et al., 2023).

Despite two decades of rising prevalence, our systems still treat complexity as the exception. Clinical guidelines, funding models, and workforce training often presume a patient with a single condition and a predictable path.

When systems fail to reflect this reality, care becomes disjointed and difficult to navigate. Patients are shuffled between appointments, asked to repeat their histories, and left to reconcile conflicting advice from disconnected providers.

The cost isn’t just inefficiency—it’s exhaustion. And too often, it’s avoidable harm.

Funding flows mirror this fragmentation. Diabetes is managed in one setting, liver disease in another, eye complications elsewhere. The specialists involved may not even work in the same network—and appointments can be spread over weeks or months.

But that’s not how people age—or how chronic illness unfolds.

These design flaws don’t just create inefficiencies. They place the burden of coordination onto patients and families—often without the tools or support to manage it.

What’s missing isn’t just a better structure. It’s accountability—someone to hold the whole picture, and hold it with care.

🧭 The Missing Link in Chronic Care

At the heart of chronic care today is a gap that’s no longer quiet—not of skill or dedication, but of continuity. In most health systems, no single clinician or team is responsible for seeing the full picture of a person’s health and well being. And no one is held accountable for holding it, either.

Care is delivered by system, not by story. Diabetes here. Liver monitoring there. Infections and fatigue managed separately, if at all.

But connecting the dots often falls to the person themselves—or to a partner or family member trying to piece it together across appointments, services, and shifting advice.

In policy terms, this is often described as a case management gap. It isn’t a flaw in delivery—it’s a missing link in design. And it matters.

A 2023 Danish cohort study tracking over 4.7 million adults found that

• people with multimorbidity experienced significantly higher levels of clinical fragmentation—linked to

• increased risks of potentially inappropriate medications and higher mortality, even after adjusting for other factors (Pedersen et al., 2023).

And while patients navigate this alone, caregivers become the invisible infrastructure. A 2024 scoping review of 24 studies found that

• caregivers of community-dwelling older adults routinely coordinate care, manage appointments, reconcile contradictory advice, and bridge communication between specialists, GPs, and social services (Kim et al., 2023).

They are not auxiliary; they are essential.

When communication breaks down, caregivers absorb the complexity—without training, without formal authority, and often at significant personal cost.

This isn’t a story of failure. It’s a call to notice what’s missing.

💸 The Cost of Fragmentation

Tim’s experience isn’t rare. It’s structural.

Our health systems—especially those built around episodic care and specialist silos—are failing people with complex, chronic needs.

This fragmentation doesn’t just strain the health system—it widens inequality. Those who struggle most to navigate complexity are often those who receive the least coordinated support, turning chronic illness into a cycle of cumulative disadvantage.

When no one owns the overall care plan, the consequences ripple outward—personally and systemically:

• Duplicated tests drive up costs without adding value.

• Conflicting medications raise the risk of serious adverse reactions.

• Social needs such as transportation, housing, or nutrition go unmet.

• Crisis events become more frequent, overwhelming emergency departments and inflating hospital admissions.

• Preventive opportunities—such as immunisation—are easily missed.

This isn’t just a systems failure. It’s a failure of fairness.

People with health literacy, digital access, or strong family support may find ways through the maze. But even the most committed families are no substitute for coordinated, integrated care.

• For those living alone, coping with cognitive decline, residing in rural areas, or managing on a fixed income, the risks escalate quickly.

• These individuals are not simply left behind—they are left out.

Chronic illness, in these cases, becomes a structural vulnerability. And the more complex your needs, the less fit-for-purpose the system becomes.

🏛️ Policy Levers That Can Shift the System

We know this can be different. Around the world, models—some small-scale, others system-wide—are showing what better looks like.

In the Netherlands, innovative models support community-based nurse-led care coordination. Buurtzorg Nederland operates self-managing neighborhood teams of around 10–12 registered nurses who provide holistic care—from medical support to meal preparation and social engagement—in patients’ homes. Analyses show Buurtzorg delivers strong outcomes, cost-efficiency, and reduced bureaucracy, and is now being adapted across several national systems (Centre for Public Impact, n.d.; Kuppen et al., 2023; Ollé-Espluga, 2024).

In Scotland, the Community Link Worker (CLW) Programme demonstrates how health systems can more effectively respond to complexity. Funded by the Scottish Government and embedded within Deep End GP practices—those serving the most deprived communities—CLWs are non-clinical staff who address the social drivers of poor health, such as housing, debt, or isolation (Scottish Government, 2022).

Rather than adding to clinical burden, CLWs enhance capacity by building trust, staying engaged over time, and helping patients navigate both medical and social systems. Evaluation of the Glasgow pilot showed increased patient wellbeing, reduced pressure on GPs, and improved team morale (Mercer et al., 2020).

What these models share is simple: someone is responsible for seeing the whole person—not just their conditions.

In policy terms, shifting toward integrated, coordinated care for people with multiple chronic conditions could mean:

• Expanding funding for care coordinators, link workers, or navigators embedded within primary care—especially in underserved areas.

• Mandating shared care plans, co-created with patients and accessible across settings and disciplines.

• Embedding continuity and coordination metrics into quality frameworks and funding models.

• Incentivizing multidisciplinary teams that work across specialties, sectors, and services—not just within silos.

These are not radical interventions. They are practical, evidence-informed, and overdue.

Closing Reflection

I’m reminded every time we talk to Tim in Australia that the health system is only as strong as its ability to see the whole person—and to stay with them through complexity.

It’s no longer enough to optimise for efficiency or single-disease outcomes. What’s needed is coordination. Continuity. And a recognition that managing health isn’t just about what happens in the clinic, but what it takes to live between appointments.

People like Tim remind us that health systems must evolve not just to treat illness, but to honour lives.

Lives that don’t fit into neat categories.
Lives that call for care as connected as the conditions they carry.

Because living with five chronic conditions shouldn’t mean navigating five disconnected systems.

And dignity should never be something people have to manage on their own.

Chowdhury, S. R., Chandra Das, D., Sunna, T. C., Beyene, J., & Hossain, A. (2023). Global and regional prevalence of multimorbidity in the adult population in community settings: a systematic review and meta-analysis. EClinicalMedicine, 57, 101860. https://doi.org/10.1016/j.eclinm.2023.101860

Kim, B., Wister, A., O'dea, E., Mitchell, B. A., Li, L., & Kadowaki, L. (2023). Roles and experiences of informal caregivers of older adults in community and healthcare system navigation: a scoping review. BMJ open, 13(12), e077641. https://doi.org/10.1136/bmjopen-2023-077641

Kuppen, R., de Leede, M., Lindenberg, J., & van Bodegom, D. (2023). Collective Prevention of Non-Communicable Diseases in an Ageing Population with Community Care. International journal of environmental research and public health, 20(4), 3134. https://doi.org/10.3390/ijerph20043134

Ollé-Espluga, L., Vargas-Leguas, H., Torrens Mèlich, L., Juan Serra, M., Arcas, M. M., & Cortès-Franch, I. (2024). Application of a new municipal management model of home care service in Barcelona: Assessment of workers' labour conditions, health, and well-being. Work (Reading, Mass.), 79(4), 1909–1924. https://doi.org/10.3233/WOR-230668

Pedersen, M. S., Møller, H., & Ersbøll, A. K. (2023). Clinical fragmentation and outcomes among individuals with multimorbidity: A nationwide cohort study. BMC Medicine, 21, 281. https://doi.org/10.1186/s12916-023-03021-3.

Mercer, S. W., Fitzpatrick, B., Grant, L., Chng, N. R., O'Brien, R., & Watt, G. C. M. (2020). The Glasgow 'Deep End' Links Worker Study: Integrating community links workers in primary care practices as a response to the inverse care law. International Journal of Equity in Health, 19(1), 116. https://doi.org/10.1186/s12939-020-01232-w

Scottish Government. (2022). Community Link Worker Programme. https://www.gov.scot/publications/community-link-worker-programme-overview/

Ageing is the future we all hope for—yet the one we least prepare for.
It’s both universal and shockingly unsupported.

We design systems to support early life, working life, and even the end of life. But the long stretch of ageing in between? That’s often left to chance—or to families.

And nowhere is our unpreparedness more visible than long-term care (LTC) defined as “health and social services to ensure that people with or at risk of significant loss of physical and mental capacity can maintain a level of functional ability consistent with their basic rights, fundamental freedoms and human dignity.”

The Readiness Gap: Long-Term Care as the Canary in the Coal Mine

If you want to understand how unready we are for ageing, just consider….

Across the world, LTC systems are often fragmented, always chronically under-resourced, and disproportionately reliant on unpaid labor. They’re built for institutions, not individuals. For managing decline, not enabling autonomy.

This isn’t a matter of slow progress. It’s a mixture of societal blindness and design failure.

“We’ve extended lifespans without extending the architecture needed to support those lives—at home, in community, in dignity.”

In most countries, access to services and care depends more on what you can afford than what you need. Formal services are difficult to navigate, home care is often poorly coordinated, and workers are overburdened, undervalued, and often excluded from basic labor protections.

Readiness isn’t about patching holes in an ageing system.
It’s about asking: What kind of life are we building toward?
And often this question is met with deathly silence.

Ageism: The Design Flaw Behind the System

Why is long-term care so chronically under-prioritized?
Because ageing itself is.

Ageism is not only self identifying. It’s an institutional and interpersonal blind spot. It shapes everything from research funding to workforce policy to the very absence of long-term care in most national ageing strategies. If something is invisible in your data, it won’t be visible in your response.

Ageism isn’t just prejudice—it’s baked into how systems are built.

The WHO Global Report on Ageism made this clear:
“Ageism remains socially accepted, institutionally reinforced, and largely invisible.”

Its effects are measurable—and costly. Ageism is associated with poorer health outcomes, delayed care, exclusion from digital services, and reduced life expectancy. It distorts how care is funded, how older people are portrayed, and how systems decide who is worth investing in. Are you worth investing in?

As part of the global effort to move beyond rhetoric and address ageism measurably, the WHO developed the WHO Ageism Scale—a validated tool to assess how individuals experience and express ageism. It captures stereotypes, prejudice, and discrimination toward older people and is designed for use across research, policy, and program settings.

By giving us a way to quantify what has long been normalized, the Scale marks a crucial step toward holding systems—and ourselves—accountable for age-based bias.

Who the System Fails First

Long-term care reveals every fault line in our social fabric. It doesn’t just expose gaps in planning—it exposes whose needs were never truly part of the plan.

Be very clear, everyone is affected yet some more than others. Older adults from racialized and migrant communities encounter additional barriers—linguistic, cultural, and financial. They are often absent from data collection, policy consultation, and care planning, despite making up large and growing portions of the ageing population in many countries.

People ageing with disability or chronic illness—especially those who have never fitted into the “independent-then-dependent” narrative—find themselves navigating fragmented services that don’t meet their needs across the life course.

Family carers are too often treated as an invisible resource. Their time, income, and health are sacrificed quietly, with little recognition, even less support and a tone from government that this is part of their duty.

In each of these groups, the impact is cumulative:
Low wages become low pensions; time spent caregiving becomes time without savings or social protection; health inequities compound; isolation deepens.

This is who the system fails first.
But make no mistake—eventually, it fails us all.

Why We Still Look Away

We don’t just underinvest in long-term care.
We look away from it.

Because it makes us uncomfortable. Because it reminds us that we might need help someday. Because it reveals how fragile our independence really is.

In many cultures, ageing is framed as personal decline. Dependence is stigmatized. Vulnerability is feared. And care work—especially unpaid care—is taken for granted.

This discomfort becomes part of the design. It may shape what we fund, what we measure, and what we pretend doesn’t need fixing. However it doesn’t need to be like this. What’s designed can be redesigned—with intention, evidence, and the political will to act.

Even when ageing is mentioned in policy, it’s often future-tense, vague, or symbolic. Long-term care is rarely integrated into national systems or infrastructure plans. And when it is, it’s usually framed as a crisis to manage—not a relationship to support.

This avoidance is not benign. It costs lives.
It places unbearable pressure on families.
It leaves older adults cycling through hospital corridors or stranded without support.
It pushes care workers into burnout and precarity.

But growing old is the one thing we all hope to do.

So let’s stop pretending we won’t be part of this story.

What Readiness Could Actually Look Like

If we were truly ready to grow old, long-term care wouldn’t be a silent crisis. It would be a cornerstone of public infrastructure—visible, valued, and well-resourced.

We’d stop treating care as a personal failing or a private burden.
We’d design it into our cities, our health systems, our economies—from the start.

Readiness would look like:

• Home-based care that’s integrated, proactive, and universally accessible

• Support for carers—with wages, pensions, respite, and legal protections

• A workforce that’s trained, respected, and paid a living wage

• Policies that treat care as infrastructure, not an emergency expense

• Culturally safe and inclusive care for all communities

We already have blueprints.

The WHO Framework for Long-Term Care (2021) lays out a path for integrated, rights-based systems that promote autonomy, inclusion, and equity. It calls on governments to invest in governance, workforce, access, innovation, and financing—elements not optional, but essential. Building on this foundation, the WHO is now developing global standards for providing quality long-term care—a process I am honored to help inform as a member of the technical committee guiding this work.

And countries are already moving:
- Japan has implemented a community-based integrated care system to support its ageing population. This model provides seamless medical, long-term care, preventive services, housing, and livelihood support, allowing older adults to live independently within their communities.

- Denmark emphasizes a “home first” strategy prioritizing home-based care over institutionalization. The country has implemented reablement programs focusing on maintaining and regaining skills for daily living, supported by digital health solutions to enhance care coordination.
- Uruguay Sistema Nacional Integrado de Cuidados (SNIC) positions care as a societal responsibility and a right. The system focuses on deinstitutionalization, inclusive care, and gender equity, aiming to redistribute care responsibilities and support caregivers.

These aren’t isolated pilots. They’re proof that change is possible when care is seen as a public good—not a private gamble.

In addition to national strategies and WHO guidance, principles from well-established care approaches—like the Eden Alternative, the Butterfly Model, and PACE—should inform the foundation of any long-term care system.

But the best care doesn’t require a branded model. It requires a commitment to dignity, relationship-based practice, emotional wellbeing, and coordinated support. These are not luxuries. They are the basics of what it means to care.

Models can help guide us. But it’s the mindset—and the political will—that make care human, not just functional.

This isn’t about fixing what’s broken.
It’s about building what’s been ignored.

“Care is not charity. It’s not the fringe of public health. It’s central to how a society honors those who shaped it.”

From Avoidance to Action

Living with dignity and choice as we age shouldn’t be a matter of luck.
It should be the result of deliberate care, just policy, and collective will.

The systems we have today were never built for this era. Not for these lifespans. Not for these life paths. And certainly not for the migrants, carers, and everyday people who now shoulder the weight of our collective neglect. We are in ‘catch up’ mode.

“We can’t keep patching a model that was never designed to hold us.”

We need to ask bolder questions:
- What would it mean to treat care as infrastructure?
- To design for interdependence, not just independence?
- To plan for ageing as a future we all share?

There is no shortage of frameworks, pilots, or community wisdom.
What we lack is not imagination—it’s commitment.

Long-term care won’t fix itself between election cycles.
If we want to honor the lives we hope to live, we need to invest in the systems that will carry us there—before they’re overwhelmed by neglect.

References

ALIGN Platform. (2025, April). Transforming gender norms through Uruguay’s National Integrated Care System. https://www.alignplatform.org/resources/report-transforming-gender-norms-uruguays-care-system

Dementia Care Matters. (n.d.). *The Butterfly Household Model of Care*. https://www.dementiacarematters.com/butterfly-model/

Eden Alternative. (n.d.). *Principles and practices*. https://www.edenalt.org/what-is-eden/

European Commission. (2023). *Long-term care report: Trends, challenges and opportunities in an ageing society*. https://ec.europa.eu/social/main.jsp?catId=738&langId=en&pubId=8473

Healthcare Denmark. (2023, November). Innovating health and assistive care in Denmark: Realising the potential of people and technology. https://healthcaredenmark.dk/media/rs2cuuiu/innovatingcare_web.pdf

International Labour Organization. (2022). *Care at work: Investing in care leave and services for a more gender equal world*. https://www.ilo.org/global/publications/books/WCMS_838653/lang--en/index.htm

National PACE Association. (n.d.). *What is PACE?* https://www.npaonline.org/pace-you/what-pace

OECD. (2023). *Promoting inclusive growth through better long-term care policies*. https://www.oecd.org/health/promoting-inclusive-growth-through-better-long-term-care-policies-b5e3a1cb-en.htm

Mitsubishi Research Institute. (2025, January). Making Japan's medical and long-term care systems self-reliant. https://www.mri.co.jp/en/knowledge/article/202409_1.html

World Health Organization. (2021). *Framework for countries to achieve an integrated continuum of long-term care*. https://www.who.int/publications/i/item/9789240038844

World Health Organization. (2021). *Global report on ageism*. https://www.who.int/publications/i/item/9789240016866