Amanda with her daughter and Dementia Support Worker

Incontinence and dementia: 'It’s embarrassing. We need more awareness and more help’

Amanda Quinn wasn’t aware that incontinence could be a symptom of dementia when she was diagnosed with Alzheimer’s disease aged 49. Read her story and why she feels the taboos around toilets must be broken.

At 49, I was diagnosed with rapidly-progressive Alzheimer’s Disease. 

I couldn’t believe it. Dementia at 49? I didn’t know it was even possible to get dementia so young – I just couldn’t comprehend it. 

It was my family that first noticed my symptoms. They said my personality had changed. I was being forgetful, had terrible mood swings and was struggling to sleep.

I just put it down to menopause, but apparently it wasn't. I went to the doctor one day and she asked ‘what can I do for you?’ I had to say 'I can't remember why I've come.’

Sudden shock

Although I was given some information, it's still a shock when new things happen. 

I started noticing that every time I went out in the car I would mess myself. I never had any sign that I needed the toilet or anything. 

Then it started happening in bed at night – so it became more and more. Sometimes you just don't know you need to go to the toilet before it's too late.

It was a huge shock – I just wanted to cry. Never in a million years did I think this was going to happen to me.

Now we can’t go anywhere without a spare change of clothing. It can happen anywhere – in the shower, the car, or in the street. Anywhere. 

You don't get any warning. It happens, and you don’t know it's happened until it's done. 

Lack of information

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Discussions about Toilet problems in our online community, Talking Point...
Discussions about Toilet problems...

If I’d have known what was coming, that might have made it easier to deal with.

When I first told the GP what was happening I didn’t think they knew how to explain it. I think they need a bit more training on that. They just couldn't tell me why it was happening.

I had thought dementia meant memory loss and that it was for old age pensioners. It wasn't until the NHS continence team got involved that I was told unfortunately this can be part of dementia too. They sorted me out with incontinence pads and everything else. 

There's not a lot of information out there about incontinence. You have to ask the right people for information. But who do you go to? 

Because it is embarrassing, especially at a young age. You need to be able to pick something up to read that's easy to understand. You don't want any of this medical jargon – you just want it straight to the point. For people with dementia, reading is a hard thing.

My family and husband were able to support me. But I didn't know who else to go to. 

Amanda and her daughter Bethany walking outside

Amanda walking with her daughter Bethany

Better awareness, better access

There's nothing you can do to stop it from happening, but there needs to be more access to public toilets. 

Not a lot of shops have toilets you can use. A lot of them will just say you can't use our toilets – and then you're stuck.

There also needs to be changing facilities within the toilets, so that if you do have an accident there's a sink there and you can change. In a lot of public toilets the sinks are outside of the toilet area. That’s no good if you need to clean yourself up. You might need help as well, so it needs to be a big enough cubicle for two of you. 

Not all trains have toilets either, unless you're on a long journey. If you mess yourself on a train like that, you've got to sit in it until you get to wherever it is you're going. 

Definitely more awareness is needed. More help needs to be given. 

Need for change

Some of the products and incontinence pads need to be sorted out too, because they're not all suitable. 

The sizes of some of them are ridiculous. It can go from stupidly thin—which does nothing—to ridiculously thick, to the point you're walking around like John Wayne. I mean no disrespect - but we don't all go around wearing granny pants. They won't fit inside your knickers!

And they're so uncomfortable and bulky. There's nothing discreet about them – you can see when somebody is wearing them. 

I know a lot of people with incontinence are farther on in their journey so they don’t think about it. But for people like me who are just starting out on their journey – it does bother me. I don't like the fact that people can see it, so I have to wear longer clothes.

A lot of things need to be changed. 

Amanda’s advice

I know it's upsetting and embarrassing, but if you experience incontinence you just have to hold your head up high.

Be prepared. Take extra clothing and wipes with you wherever you go. 

If an accident happens, don’t make a thing about it. Just go off to the toilet and do what you have to do in the best way possible. 

Don't get upset or make a big song and dance about it – especially the carers. At the end of the day it's a medical condition. We cannot help it.  It's an accident, so move on from it - and I know that's easier said than done.

I’d like to see a change in attitude across society. There needs to be more awareness as to what it’s actually like to live with dementia. We’re not a lost cause. People need to know that life can go on after a diagnosis. 

If you're living with dementia or caring for somebody who is, we can help. Call our helpline, or visit Dementia Talking Point to chat with other people in your situation.

National Dementia Helpline
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32 comments

Add your own

Amanda---so sorry to hear of your diagnosis at such an early age !!!

Very brave of you to tell your story. I lost my Father 4 years ago to Alscheimers/ Vascular Dementia . He got to 100 and was diagnosed in his mid nineties.

I agree. My mother was put on adult diapers the moment she went in nto a care centre. I think sometimes all of the people are put on adult diapers even though they can still help themselves but the short staff are a problem. Luckily there are toilets everywhere where we live which is a great help. I admire the writer of this article. What a possitive person you are.

I was also 49 when i got fired from my intensive care job i had done for 22 years. It took another 2 years to get a diagnosis of posterior cortical atrophy 😕. I have not worked since . I can't read your post as i live in Australia x

Thanks for sharing this story. My Dad is older but soiling himself and frustrated with no warning.

It would be nice if Hospitals would put you on a commode when required and not let you fill your pad and leave you there my wife cried her eyes out many times she is not a second class citizen because she has dementia Hospitals should train the nurses and support staff about the care of somebody with this horrible disease

Thank you very much for sharing your experiences. It takes great courage to talk abut such a taboo subject, but you have done so with a straightforward approach, and an attitude that will help, inform and comfort those (and there are so many!) people who have similar difficulty. Your good humour and kind spirit is appreciated. You will have connected with a great many people with s similar challenge. I wish you happiness and a great life ahead.

Local Authorities need to understand that Public Toilets are essential ( and preferably free).These are needed for all ages, and genders
.The City of York , a major international tourist center, has "lost" virtually all its public toilets and their replacement is a zero priority.
For those with the problem they are essential.

Very brave if you Amanda! My father suffered from ulcerative colitis before he was diagnosed with dementia. Not he forgets to clean himself properly and has to be cleaned and have a barrier cream applied regularly to prevent infection and sepsis.
He is in denial about all of this, being a private man and we as a family are struggling. He has recently moved into a care home because of this problem, but he is very unhappy about his situation and can’t take it in.

Hi
My dad has dementia and has recently started being constipated, then it just comes and he thinks about not being able to go to the toilet, so stays on the toilet to try and go. Then he goes to bed and may have an accident. Is constipation part of dementia?

Hello Helen,
Thank you for getting in touch. We're sorry to hear about your dad's problems with the toilet.
On this page, we have some information about constipation that may be helpful: https://www.alzheimers.org.uk/get-support/daily-living/healthy-bladder-… Our guide to Continence and using the toilet is available to download here: https://www.alzheimers.org.uk/media/8261
Please contact the National Dementia Helpline to speak with one of our expert advisers - they may be able to provide you with more tips: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
In addition, our online community - Dementia Talking Point - might be a useful place to speak with other carers who may have gone through the same thing: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
We really hope this helps, Helen.
All the best.
-
Alzheimer's Society blog team

I am a carer for my partner. She suffers with constipation. We have tried laxitives, which proved too much. I put on high fiber.

You need to apply for a Radar key which will give you access to all public Disable Toilets which have more room and running water to clean your self up and get changed

Thank you Amanda for highlighting these issues. My husband is in his 9th year of Alzheimers and has reached this point but is completely unaware. Fortunately I have been put in touch with continence nurse but you are right, the pads are really not suitable.

A wonderful frank discussion and every thing you say is so relevant . More public amenities that are dementia friendly designed

Yes also the is no public toilets in liverpool to help those of us with this I was given the outcome of this when I was only 60 years old and put on pills to help me

Good on you for bringing this problem to everyone’s attention! My dad has mixed dementia and is frequently inconinent, he does wear nhs pads when we go out, last week he had an appointment at the hospital and needed the toilet but he needs help the disabled toilet is in either the men or the ladies! So my mam went in the men’s with dad while I stood outside to I could tell the men wanting to use the toilet that my mam was in there!! Not ideal not enough toilets or they’re miles away!!!!!!

Thank you for discussing the issues surrounding incontinence and Alzheimers. I understand it is part of the process we all have to go through with this disease. The more information you pass on in the early stages I personally feel would be appreciated. Knowledge around this is important and needed. Thank you for all you do Alzheimer’s

Amanda what a wonderful, courageous and strong lady you are. I am caring for my husband who was diagnosed 4 years ago at 60 with Alzheimer's and PCA we have had a couple of incontinence issues but it's not the norm yet. I now carry a small bag everywhere with some wet wipes, moist toilet tissue, gloves a pad n spare undies...good job we ladies have big hand bags !!!! Your mantra "Don't make a song and dance about it ...move on " will stay with me and make me smile when the going gets tough. Thanks for writing the article.

Yes, Jane, I take ‘the where with all’ everywhere, too, and supervise all the time, even at home. My husband is likely to forget to put the new pad in , which can be disastrous! He has Fronto Temporal Dementia.
I got a Radar key, for disabled loos, from Amazon and it has proved very useful. Am glad this topic has been raised. Yet another symptom we weren’t expecting.
BTW, Jane, do you live near Barnstable?

We need more toilets. The present situation is a disgrace & councillors & MP's should be ashamed of allowing this situation to continue.
We need more toilets now. Can you understand. I said We need more toilets now. Please take up this request today. It could be You who
messes themselves. Or your Wife or Husband. Please get us more toilets.?

I have purchased MY "magic key" from The Ripon INFORMATION SHOP ON THE MARKET SQUARE. This large key WILL OPEN ANY LOCKED PUBLIC LOO to you in your need............................! These loos are always spotlessly clean with basin and hot/cold water.

Such a very helpful story Amanda ..so sorry that you are so young ..I work in the aged care industry & my clientele are aged persons ..even I didn’t realise that toileting accidents are early sign of Alzheimer’s or dementia ..thank you for being so brave & sharing your experiences .

Very brave of you to share this. My husband has dementia and incontinence is becoming part of everyday life. At the moment he is in hospital and they encourage him to do it in the bed and then they will clean him up!!!!!! I dread to think what I will have to put up with when he comes home.

Hi Amanda. It was a pleasure to hear your storey, and although very distressing for you, made me realise that there are lots of other people suffering with the same illness.

I have looked after my husband , who has dementia for nine years. Over the past 2months he has become doubly incontinent. I have had to buy the incontinent pads myself ( he often goes through at least a pack a day. Waiting for an incontinence nurse to visit is very frustrating. I finally got an appointment, but the day before the appointment my husband was admitted to hospital, and I had to cancel it. I have now got to wait until another appointment becomes available.

The system seems to be going down the pan (excuse the pun)

I see that the is no one in liverpool that would like to comment on my post that.i put on this site I would like some one from the Liverpool city council to comment on this post and say why the is loos in liverpool that are open for us to use when we need to go to them .
I would like the to comment on this and tell if we can get a key that will open them

Having spent many years working in the profession of caring for senior citizens many who suffered from dementia. I did not learn that constipation may be a symptom. Now in my old age I suffer from the condition as well as memory problems. Watch this space as the saying goes.

Hi my dad has dementia i try to visit and help dad but he sleeps alot. I suffer from depression and im finding it too much to look After dad i have 2 sisters and a brother .my family are saying its too much for me and dad would be better in a home .i should tell them i know they wouldnt want that.what can i do? I get myself in a state after visiting dad.i live 5 minuites up the road so im always called upon .HELP i need advice .thankyou.

Hello Mrs Morgan, thank you for getting in touch.
This sounds like a really difficult situation - but please know our dementia advisers can give you the support and advice you're looking for. Give them a call on 0300 222 11 22. Here are details about their opening times: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
In the meantime, we have advice on caring for yourself: https://www.alzheimers.org.uk/get-support/help-dementia-care/looking-af…
Also, there's a section on our site called Care homes: When is the right time and who decides?, which may be helpful for you: https://www.alzheimers.org.uk/get-support/help-dementia-care/care-homes… This information is also available as a downloadable factsheet: https://www.alzheimers.org.uk/media/12201
We really hope this helps.
All the best.
-
Alzheimer's Society blog team

Is there no one Liverpool who has this and would like to comment on this and some help to others in liverpool who have this a will hope that someone out there in liverpool who would like reply to this

Hi there, thanks for your comments.
If you are hoping to hear from Liverpool City Council regarding your question on public toilet access, may we recommend contacting the Council via their website? It looks like there's a general enquiries form, which might be the best approach: https://liverpool.gov.uk/contact-us/general-enquiries/ Hopefully someone from the right team will be able to contact you directly.
Good luck!
-
Alzheimer's Society blog team

I find it distressing that you have only been offered pads? I thought the aim is to looking at assisting people even with Dementia to regain and maintain Continence. Nurses should not just be bringing the pads! with the right support you may be able to regain Continence and your dignity.

My husband suffers with Alzheimer's and because he is on diuretics seems to spend all day weeing. I buy Tesco incontinence pants, £8 for 10. They are excellent and help to keep him dry. I also have we bottles everywhere so that he can go when the urgency occurs. We have had a couple of instances where he has had an urgent need to poo and managed to contain it because of him wearing the pants. I dread hospital and dental appointments as toilets are few and far between. I must take advice and put together an emergency kit so that we will have the means to clean him if the worse should happen. One tip I would like to pass on, all drinks my husband has I make using water that has been infused with fresh rosemary and sage sprigs. It certainly seems to help with 'in the moment' memory

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