Dementia is an umbrella term that covers a group of progressive conditions affecting how the brain works, including memory, thinking and behaviour.
Alzheimer’s disease is the most well-known and prevalent type of dementia, but there are many others. Some people may even have a combination of types of dementia. While dementia can affect everyone differently, what remains the same is the need for understanding, patience and the right support.
Caring for a loved one who has dementia can feel tough enough, and if that person also has a urostomy, you may be facing additional challenges. Please know that you are not alone and there are ways of making daily life a bit easier for both of you.
When memory affects stoma care
People who have lived with a urostomy for years may have managed their care independently without any issues. When dementia comes into the picture, remembering how or when to empty or change their bag can become tricky. In some cases, the person with dementia may become anxious or confused about the stoma itself, which can lead to hygiene concerns, or distress.
Here are some practical tips that may help:
Create routines: A regular pattern can help reduce confusion and encourage feelings of safety and confidence.
Clear reminders: Large-print, laminated, step-by-step instructions can be posted in the bathroom to guide the person through emptying or changing the bag. Just standing with them to give gentle verbal guidance can help.
Keep it simple: People with dementia often find even the simplest tasks – like doing up a button or tying a shoelace – difficult and frustrating. Break down tasks into small, manageable steps and supervise where needed, allowing plenty of time and staying calm.
Dexterity: Dementia may affect your loved one’s dexterity. One-piece urostomy bags are often easier to fit, while a two-piece system stays in place for longer.
Clothing: If clothing becomes a barrier, opt for easy-to-remove garments, or if the person is touching their stoma too much, try net pants under regular underwear to gently discourage fiddling.
Make the bathroom safer and more stoma-friendly: Small changes can make a big difference.
- Remove unnecessary items and ensure essentials like toilet paper and wipes are within easy reach.
- Remove any mats as these can create trip hazards.
- Provide a bath or shower seat if the person has mobility or balance problems.
- Leave the bathroom light on at night to help the person find their way.
- Try removing the toilet lid to avoid the chance of forgetting to lift it.
- Ensure the floor and walls are easy to clean in case of accidents.
- Be aware that changes to sight and visual-spatial problems can occur in dementia. Sometimes a white toilet-seat on a light-coloured floor can be hard to differentiate – often, a black or wooden toilet seat is more easily recognisable.
Further advice on making home a more stoma-friendly place is available on Dementia UK’s website at dementiauk.org.
When extra support is needed
In some parts of the UK, NHS carers may be available to help with your loved one’s stoma care. It’s worth checking with your local authority or Adult Social Care team to see what support is available. Depending on income and savings, there may be a cost involved, but help should be available if needs are high.
Caring for someone with dementia is a big task, and adding stoma care into the mix can feel overwhelming at times. But support is out there.
Admiral Nurses, for example, specialise in dementia care and can provide expert advice via the free and confidential Dementia Helpline (0800 888 6678), seven days a week. They’re there to listen, guide, and support families facing even the most complex situations.
Don’t forget about you
When you’re a carer for someone you love, it’s all too easy to put yourself last. But making time to rest and recharge is just as important. Whether it’s a weekend away, a walk in nature, or a few minutes to yourself with a cuppa, you’ll be better able to care for your loved one when you’re looking after your own wellbeing too.
Rest doesn’t mean you’re giving up – it means you’re replenishing yourself so you can keep going with energy and compassion.
When dementia and stoma care overlap, teamwork is key. Try to involve both stoma care nurses and dementia specialists to get the best advice and co-ordinated support. You don’t have to figure it all out alone, and the right support can make each day feel a little easier.
Support for carers
Please remember that our charity is here for you and your loved one for as long as you need us. You can call our helpline on 01223 910854 or use our contact us facility. You can also find more advice and tips for urostomates and those who care for them on our website, from night drainage to managing and preventing urinary tract infections (UTIs).
Other sources of advice and support:
- Dementia UK
- Admiral Nurse Dementia Helpline 0800 888 6678
- Alzheimer’s Society
- Carers UK
- Age UK
- Independent Age
