Dementia Care Shouldn't Feel Like a Fight

I wrote a guest column for Care Home Professional this month, and it's one of the harder pieces I've put my name to. It's about something I see constantly in my work, and lately, in my own life too: the way people living with dementia, and the families around them, are so often left to cope with far less support than the scale of what they're facing deserves.

A recent newspaper headline suggested people living with dementia are treated like second-class citizens. I think that's true. I also think it doesn't go far enough. This inequality runs through government policy, through health and social care, through society more broadly. Dementia is the UK's leading cause of death, and yet too many families still face uncertainty, fragmented support, and an exhausting fight just to get the care they need.

A diagnosis is a beginning, not an ending

Getting a diagnosis matters. It gives families answers, and sometimes access to treatments that weren't otherwise available. But a diagnosis, on its own, doesn't care for anyone. It should be the start of a journey of support, not the end of one.

Too often, families leave that appointment with little more than a leaflet, and are left to work out, largely alone, how to navigate assessments, funding, waiting lists and services that frequently don't join up. Instead of spending the time they have making memories with someone they love, they become administrators, advocates, and unpaid carers almost overnight.

I've watched this happen up close, through two close friends, aged 66 and 71, both recently diagnosed with Alzheimer's. One lives in the UK, the other in the US. Their families are facing remarkably similar struggles, regardless of which side of the Atlantic they're on.

The cost nobody puts a number on

Dementia is estimated to cost the UK around £42 billion a year, most of it falling on people living with dementia and their families. That figure is staggering, but it still doesn't tell the real story.

It doesn't measure the partner who quietly gives up their own retirement because they can't leave their spouse alone. It doesn't measure the person who hasn't had an unbroken night's sleep in months. It doesn't measure the family who reduce their working hours, or the grandchildren who watch family life reshape itself around appointments and worry. These are the invisible costs of dementia, and they stay invisible because our system of support is nowhere near strong enough.

Families in the UK and the US, without significant financial resources or expensive insurance, are left doing their very best for someone they love, while receiving nowhere near the level of support that other serious conditions, like cancer or heart disease, would typically receive.

What actually makes the difference

Almost four decades in this sector have taught me that the biggest difference always comes from people. From relationships, familiarity, kindness and trust, not from paperwork or processes.

Families need a knowledgeable advocate who can help them navigate the system, coordinate support, and take on some of the administrative weight, so they can stay a family, rather than becoming full-time carers and case managers.

Instead, the services that should exist to help are disappearing. Adult day centres in England fell by 41% between 2010 and 2018, taking with them vital places of connection, routine and respite. Alzheimer's Society continues to call for better access to specialist dementia respite care, because too many unpaid carers simply can't get the breaks they desperately need. These aren't luxuries. They're lifelines.

As those services vanish, the burden doesn't disappear. It just moves, onto husbands, wives, sons, daughters and grandchildren, who quietly reduce their hours, put their own health second, postpone retirement, and carry responsibilities no family should have to carry alone. Unpaid family carers in the UK now provide care worth around £21 billion a year. They are the invisible backbone of our dementia care system, and we cannot keep talking about helping people live well with dementia while allowing the very services that make that possible to keep shrinking.

What I believe

If we're serious about improving life for people living with dementia, we have to stop measuring success by service compliance alone. The real measure is whether people living with dementia, and the people who love them, get the responsive, compassionate, expert support they need to keep living with meaning, purpose and dignity. Until that becomes how we judge our system, we'll keep mistaking compliance for excellence.

You can read my full column, "Second-class citizens," in the September 2026 issue of Care Home Professional: https://www.carehomeprofessional.com/e-magazines/care-home-professional-september/