Unpaid carers of parents with dementia are propping up the NHS and social care system

It is no secret that dementia is one of the most pressing public health challenges the UK is facing. Dementia already affects around one million people in the UK, and this is projected to rise sharply by 2040. And yet, it remains poorly supported.

The gap between what the state provides and what people with dementia actually need is being held together almost entirely by unpaid family carers. Currently, just 1.4% of dementia healthcare spending goes on memory assessments and treatment, leaving patients and families to carry 63% of the financial costs of dementia care while paying a high price in mental health and wellbeing costs too.

‘Carents’ – adult children who are caring for ageing parents – often don’t see themselves as carers. As a result, they repeatedly fall through existing support systems, frequently being left to navigate complex health and council services alone. Combined with this, their lived experiences are poorly understood across society – by services, employers, communities and even the people closest to them.

Read more:

• The £184 billion question: What would happen if the unpaid carers stopped caring?
• Carer’s allowance turns 50: ‘I keep the money side of things from her, I don’t want her to worry’
• Number of full-time unpaid carers in Britain soars by 70%: ‘Millions of us are carers or need care’

While holding everything together for a loved one with dementia or for an ageing parent, you should not have to do it alone. It is one of the many reasons why I set up The Carents Room in 2020 – a growing community of over 70,000 members, offering peer support and 24/7 guidance from healthcare professionals.

We’ve built a platform that carents can rely on and find community through, but broader societal misunderstandings still have real consequences. We surveyed our community and more than 2,000 people caring for a relative with dementia told us many are permanently on alert, have lost their sense of self and feel isolated.

Dementia care is not simply managing a memory condition – it is navigating complex and fragmented systems, while managing safety, dignity, finances, relationships and emotional care around the clock.

As long as carents go unsupported, there are direct consequence – for their wellbeing, the quality of life of the person they care for, and for the avoidable pressures on frontline services.

Put simply, relying on families to ‘cope’ is unfair and unsustainable. 

We need urgent action. The system needs radical overhaul. This is not about financial compensation, but about helping ensure that families who provide care are recognised and the system is set up to help them better access and navigate it.

Dementia Action Week provides us with an opportunity to highlight the army of family carers delivering a key public service with no recognition. These quiet heroes work behind the scenes, so quietly they take on huge personal burdens, not even identifying themselves properly as carers, often for long periods of time. We need to ensure the system identifies them and supports them before they reach breaking point.

That’s why we’re calling on ministers and government to do three things:

Appoint a national dementia lead in government

There is currently no single point of accountability within government for dementia. A named lead, responsible for coordinating policy across health, social care, and employment, would ensure that both the person with the diagnosis and those caring for them are visible to the system.

Fund dementia in line with its true cost and impact

Dementia is the leading cause of death in England and Wales. Its costs fall disproportionately on families, with carers’ unpaid contribution to the UK economy valued at more than £100 billion a year. Recognition of dementia is needed as both a health and care priority, giving the condition parity with cancer and heart disease in research and service investment.

Guarantee proactive support for carents from diagnosis onwards

As many as 89% of carents looking after a loved one with dementia say support only arrives when things have broken down. A dementia diagnosis does not affect one person. It affects the entire family. Carents should be identified at the point of diagnosis and offered consistent, proactive support from that moment forward. Not left to reach crisis before anyone thinks to ask how they are doing.

The forthcoming Modern Service Framework for Dementia and Frailty offers hope for system improvements, but only if it is backed by clear accountability and delivery mechanisms which a national dementia lead can harness to drive meaningful joined-up change across systems that currently fail to connect.

But system change isn’t enough. Culture must change too.

Nearly two thirds of carents (65%) say they actively downplay their caring role due to stigma, and 61% feel guilty asking for help.

Everyone affected by family care in later life deserves a level of support which recognises and reflects the burden they carry. That is why everyone, across society, needs to recognise and support those who really do care for dementia.

Read the full report here.

Dr Jackie Gray has worked as an NHS GP, an NHS consultant in public health, a university lecturer in epidemiology and public Health and director of a specialist health and care consultancy. She relinquished her GP role to help her own father during his final years and experienced multiple shortfalls in traditional support services for older adults and their families. In 2020, combining her lived experience and professional expertise, she founded The Carents Room.

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