When bladder and bowel problems become part of dementia care

You might not expect to be helping with this kind of care. And when it happens, it can feel overwhelming, confusing, and sometimes even frightening. But with the right support and information, you don’t have to face it alone.

People sometimes tell the Bladder and Bowel UK Helpline that bladder and bowel problems feel like a major shift in their caring role. It can feel like moving from ‘coping’ to something much more demanding.

You might begin to notice small changes – perhaps the person you support is going to the toilet much more often, struggling to get there in time, or behaving differently, such as pacing, becoming unsettled, or even hiding clothing.

In my role as a Continence Nurse Specialist, I often speak to families who are trying to make sense of these changes. It can help to become a bit of a ‘detective’ – gently noticing patterns and asking questions like:

• Have there been changes in what or how much they’re drinking?
• Is this something new, or a change from what’s normal for them?
• Could there be a medical cause, such as a urinary tract infection or constipation?

Simple steps, like keeping a brief record of drinks and toilet use, can sometimes help you and healthcare professionals understand what’s going on. Bladder and Bowel UK have a bladder diary on their website, as an example.

It can also help to gently encourage toileting as part of everyday routines – for example, suggesting using the toilet before going out into the garden before starting the gardening.

Helping someone with very personal care can bring up difficult feelings. Many carers describe feeling guilt, worry, embarrassment or exhaustion.

You might wonder if you’re doing things ‘right’, or feel unsure about how best to support the person you care for. These feelings are incredibly common.

There can also be a real sense of loss – for both of you. The person with dementia may feel distress or embarrassment, and maintaining dignity can feel harder as care needs change.

If this is how you’re feeling, please know – you’re not alone. Talking to someone, whether that’s a healthcare professional or a support service like the Dementia Carers Count Carer Support Line, can make a real difference.

Many carers tell the Bladder and Bowel UK helpline that help with continence care often comes too late – sometimes only at a point of crisis.

It’s understandable that these conversations can feel difficult. Bladder and bowel care is deeply personal, and it can be hard to know when or how to ask for help.

But reaching out early can make things easier.

You could:

• Speak to your GP about any changes you’ve noticed
• Ask about referral to your local continence (bladder and bowel) service
• Look at trusted resources from organisations like Dementia Carers Count and Bladder & Bowel UK

In my experience, early advice and small adjustments can make a significant difference – not just practically, but in helping you feel more confident and supported.

Continence care can also bring unexpected costs.

For many carers, expenses build up quietly – extra laundry, heating, replacement clothing, and continence products. These are often paid for out of your own pocket.

Some carers also find they need to reduce working hours or stop working altogether, adding to financial pressure.

This can be an added source of stress on top of everything else. You are not alone in this experience, and organisations like Dementia Carers Count and Bladder & Bowel UK are continuing to raise awareness of these challenges.

Bladder and bowel changes can feel like a huge turning point – but they don’t have to mean facing things without support.

Small steps, the right information, and early conversations can help you feel more in control and better supported. Most importantly, they can help maintain comfort and dignity for the person you care for.

If you’re struggling, or simply unsure where to start, reaching out can make a real difference.

You are not alone in this – and support is available when you need it.”

• Dementia Carers Count Carer Support Line
• Bladder & Bowel UK resources and guidance
• Your GP or local continence service