It is encouraging to see more care providers across the sector beginning to understand what Care Campaign for the Vulnerable has championed for over a decade — that complex dementia care cannot be addressed with surface-level solutions.
Ten years ago, I founded CCFTV after witnessing first-hand the distressing impact of a system that too often misunderstood my mother’s vascular dementia — a condition that changed her personality, heightened her anxiety, and led to unpredictable responses we hadn’t seen before. What many labelled as “challenging” or “aggressive” behaviour, I came to recognise as distress. A response to fear. A lack of understanding. Environmental pressure.
Far too often, people living with dementia who exhibit these behaviours are isolated, sedated, or moved on. Their needs are misunderstood, even feared. Yet what they need is tailored support, consistent environments, specialist staff training, and above all — patience and empathy.
Complex dementia is not one-size-fits-all. Conditions such as frontotemporal dementia, Lewy body dementia, and advanced vascular dementia can cause significant shifts in personality, mood and behaviour. These are not “naughty” behaviours. They are symptoms of brain disease. And when we see them for what they are, we can respond with care, not control.
I am heartened to see providers – including many we work closely with, taking steps to better understand this. Whether it’s investing in bespoke staff training, improving the sensory and physical environments of care homes, or working with families and specialists to tailor care plans — we are seeing a shift.
More providers are now asking the right questions:
- What is this person trying to communicate?
- Is the environment overstimulating or distressing?
- How can we prevent escalation, rather than react to it?
This is care that moves beyond labels and looks at the root cause.
We are proud to support those homes and organisations making this a priority. We’ve seen providers install calm rooms, introduce meaningful activities that reduce stress, and equip their teams with the skills and confidence to respond compassionately to complex behaviour.
At CCFTV, we continue to call for national recognition of the need for specialist complex dementia training, and for environments to be adapted to minimise distress and maximise dignity.
There is still much work to do. But what we are witnessing now is a growing awareness – a sector willing to learn, listen, and improve.
For the families we support, that’s everything.
