Alzheimer's Society Innovation Hub

Staying dry – continence and dementia

I know that a lot of people with more advanced dementia struggle with continence. This is an issue that affects people’s dignity, is a barrier to living well with dementia. It can present both problems for carers, families and friends and health problems if people who are incontinent continually need to clean themselves up.

Talking Point has a lot of examples of this and it clearly takes a toll on everyone involved. If this a solution could be found for this I think it would be a huge step towards living well with dementia. It would also encourage more independence and maybe broaden the horizons for people caring for someone where they might be worried about leaving the house in case there is an accident.

Related to this is access to toilets when out and about. A friend told me about a time when he was out at a park with his grandpa who had dementia. His grandpa went into a toilet and locked the door, but then couldn’t find his way out again. He became quite distressed and shouted and banged on the door, but couldn’t follow instructions to unlock it from the inside. In the end someone who worked there came to help, but they weren’t very understanding.

What could we do to help people cope with incontinence, and accessibility of toilets when they’re out?

edited on Oct 29, 2019 by Tim Shakespeare

Helen Hamblen 1 month ago

When my father was being cared for at home he was entitled to attendance allowance to help cover the cost of things like incontinence pants. However, now he is in a care home he loses this entitlement and they will only provide incontinence pads. The pads are big, bulky, scratchy and impossible for someone with dementia to insert in to their underwear by themselves. This caused issues with sexual inhibition, as he thought the carers were interfering with him sexually (putting their hands in his pants). It also caused him to be aggressive with carers that were not very gentle with him. The health & social care system have acknowledged that it is not good for his wellbeing to wear pads but neither will take full responsibility. The NHS incontinence service will provide one pant per day, regardless of how many he needs. They say the rest need to be self funded. However, social care only leave him with the minimum PEA (The care act states - The local authority must let you to keep a Personal Expenses Allowance (PEA) of £24.90 a week. You should not be asked to put your PEA towards the cost of any of your basic care if you are a permanent or temporary care home resident. It is for your own personal use.) Neither the NHS or Adult services will explain how we are supposed to purchase incontinence pants (amongst other essentials) if they have not left him with any money to do so. This is just one of many examples of how the NHS and social care system disregard the needs of people affected by dementia.

Tim Shakespeare 2 weeks ago

This idea has been advanced to the next phase

Tim Shakespeare 2 weeks ago

This idea has been moved back to the current phase

Jennifer Bute 2 weeks ago

Sometimes it is just 'forgetting to go' There are numerous incontinence pads around but can be expensive and they seem to be rationed I heartily agree about not being able to get out of toilets we need pictures to help us lock and unlock doors to turn on taps get the soap and dry ones hands it can be really difficult as there are so many different ways "Which is it here?" we wonder NO good having words to tell us we need diagrams!

Margaret Booth 1 week ago

This is a common problem and often made worse by inflexibility from the statutory services. Lots of family are fighting individual battles so why not have a big co-ordinated battle instead.

Ann Rita 6 days ago

I too was buying incontinence pads and pants out of the attendance allowance. I was putting both on mum together and using puppy pads on the bed. Seeing the incontinence service was helpful but not an answer to the problem. They would have provided three pads a day but no pants and mum often needed more than three pads a day especially when she had water infections which she was prone to. You could opt for less pads and two washable bed protectors but there were no disposable ones. Also I had bought waterproof mattress protectors, but I needed waterproof duvet protectors and pillow protectors which are not that easy to find (I needed for a double bed). Then when I found out they sent three months supplies of pads at a time that was impossible for me to deal with as I was ill myself and could not lift the boxes and we had no room to store them either - they would have been hazard for mum. What a waste to send three months at once - after I lost mum no one wanted the stock of unused products I had bought.

Margaret Booth 4 days ago

We used washable incontinence pants which don’t have the problems of needing lots of storage space.or extra bins to dispose of them. You would need to do a wash every day but it’s not that difficult with a washing machine and they are only really suitable for urinary incontinence. Incontinence services never mention them.

Tim Shakespeare 1 day ago

This idea has been advanced to the current phase