Many of us know it already: we're heading towards a dementia crisis in this country and throwing money and beds at it will not be enough. By 2040, around 1.4 million people in the UK will be living with dementia, up from 982,000 in 2024. The economic cost is forecast to more than double, reaching £90 billion. Extraordinary numbers indeed but to my mind they're not the real problem.
The real problem is cultural. For decades, dementia has been treated as a medical condition to be managed rather than a human experience to be understood. We've built systems that only kick in when families reach breaking point and we've let fear do the work of keeping people isolated. This has to change and no workforce strategy or policy framework will fix it if the culture underneath stays the same.
We still whisper the word
Despite everything we now know, a dementia diagnosis still carries enormous stigma. People delay seeking help because they are terrified of losing their identity, their independence and their sense of self. Families remain silent for months, sometimes years before asking for support. In some communities and cultures, there is no concept or word at all for the family members who care for a loved one.
I've spoken to many families who described being handed some leaflets after a diagnosis and then left entirely on their own to figure out what to do. The appointment ends, the door closes and that's it! Over time, friends drift away and invitations dry up; conversations become uncomfortable. The person living with dementia becomes socially invisible not because of the condition itself but because of how others respond to it.
There are real consequences to this. Fear delays diagnosis which in turn delays support. Delayed support means more crisis admissions, more family care partner burnout and more avoidable deterioration.
More than a third of people living with dementia in the UK do not yet have a formal diagnosis at all. That's not just a clinical failure. It's what happens when a society cannot talk honestly about something it finds frightening.
The invisible workforce holding everything together
Behind almost every person living with dementia is someone: a spouse, an adult child, a friend, a neighbour quietly doing an enormous amount of work that society barely notices. Incidentally, I prefer the term care partner rather than carer, because it better reflects the collaboration involved. But whatever we call them, these are people who have taken on extraordinarily complex responsibilities with little preparation and even less support.
Unpaid care accounts for around half the total economic cost of dementia in the UK. A third of dementia care partners provide more than 100 hours of care every week. Let that figure sink in for a moment. These are people giving up careers, financial security, sleep, health and their own sense of who they are.
What makes this harder is the system these families are expected to navigate: rigid processes, fragmented services with charities filling in the gaps, leaflets instead of real guidance and information instead of emotional support. Many care partners describe feeling abandoned from the moment of diagnosis and what follows is often years of managing alone, including all the distress that comes at 2am, the unpredictable behaviours, the grief of losing someone while they are still here. No society should treat that level of isolation as normal.
A workforce stretched to its limits
At precisely the moment demand for dementia care is rising sharply, the professional workforce is already under severe pressure. Vacancy rates in adult social care remain far higher than most industries. Recruitment and retention are chronic problems.
But the answer is not simply more staff. Too many care environments remain task-focused rather than relationship-focused. Training has become compliance-driven rather than transformational. In my experience, dementia education still too often concentrates on knowledge and checklists rather than developing real practical skills and too often relies on medication to manage behaviour rather than trying to understand the human need beneath it.
For example: I've come across some professionals who may well know the UK Mental Capacity Act 2005 inside out but lack the skills to get permission to support somebody who's struggling with their cognition. When I see “declined getting dressed” or “refused food” written in daily care notes, that tells me more about the care partner and their relationship with the individual rather than the person living with dementia. Permission is the fine dividing line between abuse and neglect with dementia care more a vocational art than a science.
It seems to me we need more training that places value on developing emotional intelligence and growing relationships rather than teaching people regurgitation of facts and the formula to answer an NVQ question but I digress!
What radical change actually looks like
We don't need adjustments around the edges. We need a fundamental reframing of how dementia is understood and responded to not starting at crisis point but long before families reach exhaustion.
To me, that means seeing people living with dementia as individuals with value, voice and identity not as patients to be managed. It means treating care partners as essential, not invisible extras. It means building genuinely dementia-aware communities where inclusion is ordinary. It means training professionals in empathy and communication alongside clinical knowledge. It means designing care environments around human connection rather than institutional convenience. And it means talking openly about dementia in workplaces, schools and public life, not only in waiting rooms.
The encouraging thing is that we already know what works. Research consistently shows that earlier diagnosis and proactive support reduce crises, delay hospital admissions and help people stay independent for longer. Relationship-centred care improves wellbeing. Dementia-friendly communities reduce isolation. Emotionally skilled communication reduces distress more effectively than control-based approaches. When communities adapt properly, people living with dementia can continue to live meaningful, connected lives.
The issue is not a lack of evidence but more whether we are prepared to act on it.
Why this matters to me personally
My mission is not simply to deliver training. It's to help change the culture surrounding dementia across families, communities and services. I want to contribute to a future where people seek support earlier without shame, where care partners feel genuinely held rather than abandoned, where professionals feel empowered rather than burnt out and where those living with dementia remain visible and valued.
Dementia is not someone else's issue. It will touch nearly every family eventually, directly or indirectly. The question is no longer whether it will affect our communities. It's whether we keep responding with fear, fragmentation and crisis or whether we choose to build something more compassionate, more informed and more human that involves all of us.
I believe we can and I believe we must.