Dementia Support Line
Real stories
Raising awareness of incontinence and dementia
Amanda Quinn wasn’t aware that incontinence could be a symptom of dementia when she was diagnosed with young-onset Alzheimer’s disease aged 49. Read her story, and learn 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.’
The shock of developing incontinence
Although I was given some information about how dementia progresses, 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 around incontinence and dementia
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 walking with her daughter Bethany
Better awareness of incontinence, better access to resources
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 of incontinence and dementia 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 long clothes.
A lot of things need to be changed.
Amanda’s advice to others experiencing incontinence
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.
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Marie
saysJackie Collins
saysMy father has vascular dementia and is totally inconvenient. Now he’s wanting to go but can’t go to wee. It this the norm or perhaps a bladder infection? He’s very tired, confused, and many times where is he and other things. I would like to discuss this with someone to possibly confirm he is at the last stages.
Anonymous
saysHi Jackie,
Thanks for your comment. The GP would be best placed to comment on your father's individual circumstance or provide the type of confirmation you're looking for.
In the meantime, you may benefit from calling our Dementia Connect support line on 0333 150 3456 to speak with one of our dementia advisers. They can listen to your father's situation in more detail, and give specific information and support. More details about the support line (including seasonal opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
You might also find it useful to speak to other people who are going through similar situations in our online community, Talking Point. Here, carers and other people affected by dementia share their experiences and offer support and advice. You can read more about the community, or register for free here: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
We hope this helps, Jackie. Please do call our support line if you need to speak with an adviser.
Alzheimer's Society blog team
mary brace
saystotally agree not enough is done for people witn incontinence in the community this has been an interesting read
Karen Shaw
saysMy father has dementia and is now doubly incontinent. 'Accidents'- major ones are a daily occurrence and you just don't know what you are going to be met with, He lives alone with carers coming in a couple of times a day but they just help with domestic stuff. He refuses to shower and is now getting infections. I find myself sinking into depression. I would prefer that he goes into a care home but he is fighting it. The GP doesn't seem to get it. I am at the point of withdrawing from him completely to save my mental health as i just cant cope. Where is the support for family?
Alzheimer's Society
saysHi Karen, thank you for your comment, I'm very sorry to hear about your father's condition.
If you'd like to talk to us, you can call our Dementia Connect support line on 0333 150 3456 for more information, advice and support specific to your father's situation. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
I hope this is helpful,
Alzheimer's Society blog team
Linda
saysHi Amanda ,thank you for sharing your story. I am writing from Rwanda.I have a parent who has Alzheimer with urine incontinence with a very high frequency.Of course he can not remember where are the toilet and now he fails to communicate with us to tell us to help him.Is there any recommendation?how can we help him?
Anonymous
saysHello Linda
Thanks for getting in touch. You may find it helpful to talk with other people affected by dementia in similar situations. There are discussions happening within our online community, Talking Point: https://forum.alzheimers.org.uk/threads/incontinence-help-please.113169/
We hope this helps, Linda.
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Alzheimer's Society blog team
Chris McGowan
saysMy 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
Jacqueline Skott
saysI 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.
R A lake
saysIs 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
Anonymous
saysHi 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!
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Alzheimer's Society blog team
Mrs morgan
saysHi 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.
Anonymous
saysHello 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.
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Alzheimer's Society blog team
Mrs J Clarke
saysHaving 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.
R A lake
saysI 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
Christine Butterfield
saysHi 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)
Christine Butterfield
saysVery 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.
Helen Taylor
saysSuch 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 .
Celia- Margaret Murray
saysI 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.