By Jayne Connery, Director, Care Campaign for the Vulnerable
When we hear the term memory care, it often conjures images of forgetfulness, gentle confusion, or the early stages of dementia. But dementia is never just about memory. For families and providers, the journey quickly becomes far more complex and it is here that the care sector must continue to direct its focus.
Dementia is a progressive and multi-faceted condition. While memory loss is often the first sign, it is just one aspect of a much wider picture. As the disease advances, we see communication difficulties, changes in behaviour, frailty, mobility decline, swallowing problems, anxiety, aggression, and heightened risk of falls and injury. These are not “exceptions” – they are common realities. This is why we must frame dementia as complex care.
For families, this distinction matters. Too many enter the system believing dementia means forgetfulness alone, only to find themselves overwhelmed when their loved one’s needs escalate. Honesty at the start is crucial. Families deserve to know that dementia will almost certainly progress into complexity, so they can prepare emotionally and practically.
For providers, the challenge is equally significant. Meeting the needs of people living with complex dementia requires more than compassion; it requires training, resources, innovation, and a culture of openness. Staff need the tools and confidence to manage distressed behaviour without resorting to restrictive practices. Homes need to work closely with hospitals, GPs, and families to ensure continuity of care. And above all, leadership must promote an environment where safety and dignity go hand in hand.
Care Campaign for the Vulnerable (CCFTV), works daily with families navigating this reality. What strikes me time and again is the commitment of so many care teams striving to do their best, often under immense pressure. The sector deserves recognition for the progress it has made in embracing person-centred, dignity-led dementia care. But it also needs the support – from government, regulators, and society at large – to meet the rising tide of complexity.
The statistics speak for themselves. There are currently 982,000 people living with dementia in the UK, a number projected to rise to 1.4 million by 2040. Research shows that as dementia progresses, up to 90% of people will experience behavioural or psychological symptoms, from depression and agitation to aggression and paranoia. These are not marginal issues; they are central to the lived reality of dementia care.
So when we talk about memory care or complex dementia care, we must remember: they are not separate worlds. They are stages of the same journey. Our role as a sector is to meet people with honesty, prepare families for what lies ahead, and ensure that care is equipped to adapt as dementia unfolds.
Complex dementia is not rare. It is the growing reality of our ageing population. The sooner we stop reducing dementia to memory loss alone, the better placed we will be to deliver the safe, dignified, and compassionate care that every person deserves.
