The last taboo

Our annual survey of dementia carers paints a vivid picture of the challenges of navigating continence care when you are looking after someone with dementia. Carers describe sleepless nights interrupted by repeated trips to the bathroom, accidents that mean changing bedding and clothing in the early hours, and the constant anxiety of trying to prevent distress for a loved one.

Some carers link the onset of continence problems directly to a decline in their own physical and emotional wellbeing.

Others describe it as the moment when caring shifted from challenging to overwhelming, prompting them to question whether they could continue supporting their loved one at home.

What emerges is not simply a story about practical challenges – it is about emotional strain.

Carers speak about guilt and exhaustion. They describe the difficulty of providing intimate personal care to a spouse, parent, or partner. Many worry constantly about getting things wrong. Alongside the physical demands comes the emotional burden of seeing someone you love experience distress, embarrassment, and a loss of dignity.

Incontinence can limit social activities, undermine confidence, and increase feelings of isolation. Families who once enjoyed days out, visits with friends, or simple trips to the shops can find themselves organising their lives around access to toilets, spare clothing, and the possibility of accidents. The world gradually becomes smaller.

This World Continence Week, and beyond, we want these findings to prompt a wider conversation about an aspect of dementia care that remains largely hidden from public view. Not because continence is the most important challenge associated with dementia, but because carers themselves are telling us that it is one of the issues most likely to push families towards crisis.