“Your Father has been diagnosed with vascular dementia,” announced Mum, in her typical matter-of-fact way during one of our regular phone calls early in 2025. “Oh okay,” I said. “I'm not surprised and at least we know what we're dealing with now.” There was a brief pause at the end of the line and the conversation swiftly moved on to more mundane matters.

That's the dynamic in my family: keep calm and carry on. Perhaps because health was the background soundtrack of my childhood with nothing taboo, including bodily functions and death. My Mother was a health and social care worker before retirement; my Father spent years as an operating theatre technician; my Uncle was an orthopaedic surgeon; my Aunt a nursing sister. It was almost inevitable I ended up working in care roles myself.

Reflecting on that phone call much later, I realised the bitter irony: Dad had produced a daughter who had built a career helping other families through exactly this. What I naively failed to factor in was that when you have a close familial relationship with a person living with dementia - a less-than-ideal shared history, old patterns, old wounds - brain change can upend even the most well-intentioned plans. Expertise is not immunity.

The signs were there if you knew where to look

In retrospect, there were signs of an issue years earlier. Shortly after the worst of the COVID pandemic, Mum and Dad took a holiday abroad. Well outside his normal environment and routine, Dad - an ex-Royal Navy man, normally in control of, well, just about everything - showed a subtle but unmistakable change. Standing in the hotel room, he didn't seem to know how to charge his mobile phone: a task he must have performed hundreds of times. “That's interesting,” I thought, saying nothing, until he finally admitted he could use some help.

Mum later told me that my Father had appeared completely disorientated on multiple occasions during that fortnight. My brothers recalled earlier episodes still, including one where Dad arrived at an airport and was unable to find his passport. This was something entirely out of character for a man whose Navy training had made him meticulous.

While it's easy to dismiss individual episodes of odd behaviour as normal signs of ageing, viewed together they may well reveal a pattern and that pattern is always worth investigating at the earliest opportunity. Early diagnosis isn't a death sentence. It's the gift of time.

And so, our family's diagnosis delivered, we were unceremoniously catapulted into the fragmented world of dementia care in the UK.

A system that leaves families to piece it together alone

Ideally, diagnosis should be viewed as the beginning of support and not simply the end of an assessment. In reality, what follows is a patchwork of separate, disconnected services: local authority provision, charities and private concerns, with no obvious coordination between them. Certainly that was my family's experience.

At 83, my Mother rapidly became overwhelmed trying to navigate which group offered what and how to translate that information into practical help for her and Dad. Over a year later, even I - a dementia care specialist - still don't fully understand how our local support network operates and under what criteria families qualify.

Mum was keen to learn. To her enormous credit, she sought out training offered by local groups. But she found much of it dry, theoretical and delivered in environments that left Dad uncomfortable and unable to concentrate. He was struggling to follow ordinary conversation, let alone absorb a lecture that effectively amounted to a presentation of brain anatomy and physiology with the emphasis on what he was going to lose.

Knowledge is of course important but it does need to reach people in a form they can use.

When expertise meets reality: what actually works

Dad's dementia developed at a breathtaking speed, catching all of us unawares. After diagnosis, Mum seemed to find renewed purpose, rolling her sleeves up and stepping back into a caring role with her usual determination. But a series of falls, blue-light calls and hospital stays soon took their toll, compounded by increasingly challenging situations: disturbed nights, incontinence and verbal and physical aggression as Dad desperately tried to express himself in the only ways he still could.

It soon became clear that Mum was floundering. So, as diplomatically as I could, I began teaching her PAC™ (Positive Approach to Care®) skills: Teepa Snow's practical, evidence-based techniques that had transformed my own practice. Slowly she began to see dementia from Dad's perspective, rather than viewing his behaviour as a problem to be managed.

She learned to shift her focus from trying to control behaviour to understanding the brain changes driving it. She learned to respond rather than react and to practise “doing with” rather than “doing to”. The difference the practical techniques made was remarkable, not just for Dad but for Mum's own wellbeing and sense of agency.

If this is what a short burst of practical, accessible, person-centred training achieved in one household I thought to myself, what if it's multiplied across hundreds of thousands of family carers across the UK? The potential becomes extraordinary. And why aren't PAC skills mandatory training for professionals?

The crisis ahead and why the current approach isn't enough

My family's experience is not unusual. It's the norm. And we are running out of time to pretend otherwise. The scale of what is coming is hard to overstate:

  • Dementia diagnoses are set to rise exponentially over the coming couple of decades as the population ages.
  • Vacancies for carers in general, let alone dementia care specialists, remain stubbornly high with the workforce unable to keep pace with demand.
  • Local authorities are already struggling to meet the need for care with budgets stretched to breaking point.
  • A persistent culture of fear and stigma surrounds dementia diagnosis, driving isolation, not just for the person living with dementia but for the family carers who support them.

Delegating responsibility upward - to local authorities, NHS trusts and professional bodies is not working. It's never been enough on its own and the gulf between need and provision is widening. Meanwhile, the majority of dementia care in the UK is delivered not by professionals but by family members and community networks. These are people who are currently left to figure things out alone, often in crisis, without the skills or support they need.

The proposal: grass-roots education at scale

Looking back through history, radical cultural change has always begun with education because change cannot happen without awareness and awareness cannot happen without access to the right information in the right form. The question is not whether family carers and communities need to be skilled up. It is how to do it at the scale and speed required.

Rather than continuing to take a top-down view, I'm proposing something different: a grass-roots model, starting in communities, training family carers with the practical, person-centred skills that actually make a difference. The goal is to end the feelings of isolation and abandonment that characterise so many families' experiences of dementia and to replace them with confidence, connection and competence.

I've seen what this looks like in practice. I watched it transform my own mother from a carer who was drowning to one who could meet my father where he was with compassion and skill - most of the time at least! That transformation didn't require a clinical setting, a lecture hall or a lengthy course. It required practical knowledge delivered accessibly, by someone who understood both the theory and the human reality of the disease.

More than five years ago, I quietly purchased a domain name: Dementia Training UK. At the time, I wasn't sure what it would become. Now, having lived through this with my own family, I am certain its time is now.

What I'm asking for

The dementia care system in the UK is at a turning point. We can continue to patch a failing structure, or we can begin building something that meets people where they are: in their homes, their community halls, their local groups. Something that gives family carers not just information but real, usable skills the kind that change how they experience the role they never signed up to and how their loved one experiences their care.

I'm looking for PAC™ certified colleagues - there's already a small network of us across the UK - partners, funders and commissioners who understand that the solution to the dementia crisis cannot come from the top down alone. It must start at grass-roots level with the people who are already doing the work, every single day, without adequate support. 

Because if we don't reach them, nobody will.