How can we improve continence care for people living with dementia?

People living with dementia need care that promotes continence, manages continence problems as they arise, and always preserves their dignity. Recent NIHR research has explored the impact of continence problems on people living with dementia, their carers and the professionals looking after them. The research suggests changes that would help ensure that people receive the high quality, personalised continence care they need. 

In this podcast, Helen Saul speaks with Katie Featherstone, Professor of Sociology in Medicine and Director of the Geller Institute at the University of West London; Karen Harrison Dening, Head of Research at Dementia UK and Professor of Dementia Nursing at De Montfort University; Zena Aldridge, Regional Clinical Advisor (dementia) NHS England & Improvement and Suzy Webster, a carer whose mum is living with dementia. They discuss the impact of continence care on this vulnerable population and share insights from their lived experiences and research.

Read a full transcript of the episode here.

The views and opinions expressed in this podcast are those of the host and guests and do not necessarily reflect those of the NIHR or the Department of Health and Social Care. 

Transcript

How can we improve continence care for people living with dementia?

[Music]

Helen Saul (00:10)
Welcome to the podcast of the National Institute for Health and Care Research, the NIHR. This episode is about continence care for people living with dementia. We'll be discussing the impact of continence problems on the person living with dementia, on their carers, and on health and care staff. My name is Helen Saul. I'm editor in chief of the NIHR Evidence website, where you can find our latest themed review, which brings together research evidence on continence care for people living with dementia. I'm joined by Katie Featherstone, professor of Sociology in Medicine and Director of the Geller Institute at the University of West London. She'll be describing her ethnographic study on the experience of people living with dementia who have been admitted to acute hospital wards. Also joining us is Karen Harrison Dening, head of Research at Dementia UK and Professor of Dementia Nursing at De Montfort University. Karen was a co-author on Katie's study and she'll give us her insights on what the findings mean for nursing practice in hospitals. But many of the problems with continence care in hospitals are also seen in the community. Zena Aldridge, Admiral Nurse Research Fellow for Dementia UK is also with us, and she'll be discussing continence problems for people living with dementia at home and for their families.

So this podcast will cover the importance of helping people living with dementia maintain continence for as long as possible. We'll discuss research on what is lacking in the care of these vulnerable people in hospitals, how staffing levels and the culture on wards can prevent staff giving good quality person-centered care. Equally, we’ll look at the pressures faced by carers in the community, and finally our panel will give their suggestions about the changes that could make a difference. But before this recording, I spoke to Suzy Webster. Suzy's mother is 75. She's had dementia for many years. So Suzy has long term experience as a carer of her mother's continence problems. She told me what it was like in the early stages.

Suzy Webster (02:36)
Mum was very able to manage, of course, at the start of her incontinence problems. My mum was always a very private person, very sociable, very friendly, but very closed off emotionally, and so didn't really discuss with us any of the symptoms that she was experiencing around her, especially around her incontinence. But it became something that almost took over our lives in that we had to plan around it. So if we were going even for a day trip or going to visit family or going to a restaurant, it became something that we had to manage around every situation that we were in. It was probably before the time of Google, but trying to find out about where public toilets were, if we were going shopping, which shops had toilets in because she was so concerned about having to use the toilet so frequently that she didn't drink enough fluids, really. Or before we went anywhere, it took over her mind in a way, because it was such a big issue. She managed in her own way for a long time, although it did affect everything that we did.

Helen Saul (03:55)
Perhaps we could start with you, Zena. Could you define continence for us?

Zena Aldridge (04:01)
Continence is the inability to manage either your bowel or your bladder and remain able to get to the toilet in time, et cetera, et cetera. But the problem is that incontinence is caused by multiple reasons. So it might be a physiological cause, it might be a medical cause by medication, et cetera. But there is an assumption that when someone with dementia becomes incontinent, that it's a symptom of their dementia. And in the early stages, that's rarely the case unless they're experiencing something called functional incontinences, which is when they have issues with their memory, their dexterity, their ability to perform tasks such as opening buttons and fly zips, things like that, or be able to communicate the need to go to the toilet. But the problem is we don't often talk about it. It's not often asked. A lot of clinicians and health professionals don't perhaps ask the person with dementia or their family carers if they're not in any of these difficulties and give them some strategies to help support them to reduce the incidence of continence. But equally, someone with dementia, particularly in the early stages, should have a continent assessment in the same way that someone without dementia should have a continent assessment, because there might be some treatments available and exercises perhaps available that can improve their ability to remain continent for longer.

And I think that's one of the messages that often get lost. And obviously, if family carers are not aware, or the person with dementia is not aware that it's not necessarily a symptom of the dementia because of the stigma attached to it, they may hide it and not discuss it. Thus, they're not getting access to the appropriate care support they might need.

Helen Saul (05:37)
Thank you, Zena. And to go back to Suzy's story, how typical would you see her experience?

Zena Aldridge (05:44)
I think it's incredibly common. I think continence is something that we still don't talk about. I mean, we are now starting to see adverts on the television, aren't we, for continence aids for younger women now, and I hope that that will gradually break the taboo down. But still, in the older population, they might have the embarrassment. They don't want to actually talk about it. It's not something that they would have talked about. And so those people don't get that opportunity to have an appropriate assessment. The other issue we have is a lack of continence services. Now, a lot of the early stage continence assessments are carried out by district nurses who may not have the necessary skills and knowledge around perhaps more complex issues around continence, such as functioning continence, and not understand how to best support those people experiencing it. So it's incredibly common. And obviously, the longer it goes on, the more difficult it is to reverse some of the symptoms and manage those. And of course, like Suzy's situation where she's talking about her mum not eating and drinking, perhaps effectively, that can lead to all sorts of problems in terms of urinary tract infections, malnutrition, all those things that people think if they don't eat or drink certain foods or in volume, it will prevent them going to the toilet. But obviously it can cause other health conditions. So it's such an important aspect of care that gets overlooked time and time again.

Helen Saul (07:10)
Thank you. Karen, would you add to that? 

Karen Harrison Dening (07:15)
Yeah, I think there's often an assumption that we're talking about incontinence, whereas actually we should be reframing it as continence, and actually promoting that wherever possible. And it's not an absolute, you've got it or you haven't got it in terms of continence. So it's more about accepting what you can do and what you can do to make things better for the individual. It's a situation as people age that is incredibly fraught.

Helen Saul (07:44)
And the point that Suzy also made is that the impact is on the carer as well as on the person with dementia.

Karen Harrison Dening (07:52)
Exactly. I think that there's always this thing working in dementia care that the spouse or the adult child is automatically assumed to take the role of carer once a diagnosis is made. But this might not actually be what they want to do or what they feel able to continue doing. And Zena and I know from experience that when the potential for incontinence rears its head, it can actually challenge many carers and supporters of people with dementia almost beyond that that they feel able to do. And we often see it as being the straw that breaks the camel's back, if you like. Care packages can disintegrate within a day or two of the first instance of incontinence, particularly faecal incontinence. So it's a really difficult situation for families to be in, really.

Helen Saul (08:47)
So, Katie, let's look now at your research, which was carried out in hospitals. I wonder if you could outline the thinking behind your study.

Katie Featherstone (08:57)
I think continence care is something that is really under researched. And for us, it was around our previous research we saw in hospital wards. There was so much continence care going on. It was an everyday part of work. It was an everyday part of care that people with dementia needed. But it was so invisible, it was so silenced. It was something that staff didn't talk about. Institutionally, it seemed to have no value whatsoever. So that was really our driver to go ‘actually, we can see that this is a really key part of care. Why is it so hidden?’ We need to really think about this, because once someone is identified as being incontinent or having incontinent problems, then that has major consequences for their future, for their opportunities to go home.

Helen Saul (09:45)
What did you do? How did you go about it?

Katie Featherstone (09:48)
Well, there's a kind of a wider body of evidence that tells us that ward cultures, the organisation and delivery of care is really vital in supporting good outcomes for people living with dementia. And when that organisation and delivery isn't effective, that's when we get really poor outcomes, poor experiences and we know the really bad outcomes for this population. So drawing on that body of work, looking at organisation culture, we decided to use really in-depth observational work. So using ethnography, classic sociological research, doing long-term engagement in hospital wards, shadowing nurses, observing everyday work, going in at handover, following teams as they do everyday work. And that includes a real focus on continence care and really watching what they're doing and why, and talking to them about what are the pressures on them, why are they doing that, what do they see as priorities in their everyday work? But then also talking to people living with dementia and carers in the wards about their experiences and how they find life within the acute ward. 

Helen Saul (11:05)
And what did you find? 

Katie Featherstone (11:08)
What we found was ‘pad cultures’, and we found that the ‘pad cultures’ were across all the wards we looked at - really average, ordinary wards. And my colleague Andy Northcott and I were in wards for 180 days within six wards across England and Wales. And so these ‘pad cultures’ we identified were an embedded practice within all of these acute wards. 

Helen Saul (11:32)
By ‘pad culture', you mean that people with dementia were expected to wear a pad whether or not they were continent? 

Katie Featherstone (11:41)
Exactly. So use of continence pads, and we don't mean the kind of the ones you see on TV, which are kind of nice pull on continence pads that seem, you know, quite discreet. These are very large continence pads, often continence sheets placed on people. Absolutely regardless of their their continence, regardless of their independence and ability to walk to the bathroom or not. It was a routine practice that ward staff carried out. It was just absolutely everyday part of everyday work. 

Helen Saul (12:19)
And why did they do that? 

Katie Featherstone (12:20)
So the rationales were really about it being a precautionary strategy. It was used so that it could provide safeguards, ensure containment of any waste, preventing accidents or incontinent episodes. So it was done in a kind of a supportive way. But what we found is it had really wider, powerful impacts on ward cultures. 

And what we found was that once wards were placing everybody in continence pads, it led to an expectation that staff really expected people with dementia, not only to wear the pads, but also to use the pads. And that was the kind of the key issue for us was actually that expectation of using pads, which of course, has implications for dignity, but also outcomes for people living with dementia. 

Helen Saul (13:15)
So are you saying that people could actually lose continence after a hospital stay? 

Katie Featherstone (13:21)
Absolutely. And of course, incontinence can happen very fast, but also being labeled incontinent can have devastating impacts. So once you have a large number of people in a ward who are identified as wearing continence pads, not only are they expected to use them, but once they are placed in those pads, it's really assumed that they are incontinent. So that can quickly become in handover notes that can then quickly transfer into somebody's hospital records, their notes. And once that becomes something that is known or assumed to be the case, then that can be very difficult for families to cope with. It can really impact on somebody's human rights in terms of where they can go next. Will they be able to go back to their own home? Does that mean institutionalisation? So it's a small kind of part of everyday culture in these wards, but it can have really significant impacts for people living with dementia and the potential for their futures. 

Helen Saul (14:28)
And what recommendation did you make on the back of that? 

Katie Featherstone (14:31)
Well, I think for us, it was the recommendations about the need to support people with dementia to be independent and remain independent as long as possible. Access to toilets is really, really key here, but also real recommendations for ward staff in terms of, they were such an unsupported group around continence care. For us it's about NHS organisations really recognising the work of continence care, the skill required in delivering high quality continence care that really is so important that actually staff need to be to see this work is valued by the institutions they work within. 

Helen Saul (15:13)
Karen, you were also involved in this study and I wonder, from a nursing background what findings of this study hit home as far as you were concerned?

Karen Harrison Dening (15:24)
Having been in nursing for over 45 years, I found it very distressing to read these accounts that were largely related to nursing and health care assistant activity. And it felt like I was reading some narrative from, in the early seventies, probably when I first started nursing and how similarly wards and nursing activities were very task focused, were very routine focused, almost as if patients were secondary to consideration, really. It was about getting through the shift to make sure that ward rounds occurred smoothly, that medicines were given accurately and smoothly, and that mealtimes weren't interrupted. 

And it felt like the cost to this was the dignity and the potential of this group of people, really, people with dementia and older people, as Katie said, you know, older people tended to be treated in the same way. And despite the fact that people were, when admitted, were mobile, they seem to orientate themselves to the wards quite well. They found the toilets themselves. They were encouraged or in fact, told to stop, to wear the pads, stay by their bed, to stay in bed, and to be contained. So essentially that the tasks and the smooth running of the ward continued and the need for the person to remain continent took second place to the routines of the ward, and I find it quite distressing to read. So the implications are quite profound really in how we move forward from this. 

What is equally and perhaps more saddening is that some of these people with dementia will then further be labelled as aggressive or to claim to be exhibiting behaviour and psychological symptoms of dementia, which is a feature of dementia. Yet many of these people are just reacting to the distress they're feeling at being incontinent and not being in control. And as continence or incontinence will remain in their records. Being an aggressive patient will last a lot longer and will definitely have an impact on what their discharge options are, really.

Helen Saul (18:00)
That's a devastating consequence of a hospital stay. There were also findings about the language staff are using with patients. Could you talk us through that, please? 

Karen Harrison Dening (18:12)
Yes, there's a curious mix. One overriding impression on me was this assumption that drawing a curtain around a bed made that communication inside the closed area private. It doesn't. So whatever's heard, whether that be a bodily noise of actually going to the toilet on a commode or indeed the conversations that the nurses were having with the person with dementia are audible to the rest of the ward. You know, that doesn't give privacy. But also the language that was used was wholly inappropriate. There was a high level of infantilisation used in language, which is demeaning for any adult, but certainly older people whose dignity is at risk of being fragmented. And there was a lack of using technical words to describe body parts. So I think that the term vagina, for example, was mentioned so few times, yet it's accurate and most people understand what that means. And particularly male genital organs were given inappropriate terms and expressions that I would not expect to hear on a ward. One problem I have is that if such care is deemed to be of such less significance that an unqualified health care assistant can carry out, I would argue that this care warrants a high level of knowledge, of experience, of practice, which requires education, it requires training, it requires role modelling from a qualified staff. And I felt that that just wasn't present. 

Katie Featherstone (20:14)
Yeah. Yeah, absolutely. We found just, you know, really high levels of silencing in the the intimate care involved in continence care, care work on the bodies of people living with dementia was very silenced, really kind of assuming that those tasks could take place without really asking for a lot of confirmation that the person knew what was going to happen. So, yes, lots of euphemisms and a real sense of the uncomfortableness of staff in talking about continence, about intimate care, particularly with older people. But in contrast as well, people with dementia were expected to communicate their continence needs very verbally and very clearly to staff. They had to say very clearly, you know, I have a need or they had to ring the personal alarm to get help. Any uncomfortableness they had in communicating that their continence needs was really ignored or was really not seen in the pace of work in the ward, it was invisible and that extended to any kind of bodily distress that people displayed. So, for example, that kind of uncomfortableness of someone who, you know, needs to go to the bathroom but just doesn't know how to get there or has an urgency and urgent need. Those bodily expressions were really not visible to staff. They were there, but they could not recognise them. And all of those things just caused an awful lot of distress for everybody, for the person, but also for the staff as well. 

Karen Harrison Dening (21:53)
I think at times that the patients did express their needs simply and quite well. I need to go to the toilet. But they were often ignored or distracted or indeed told you have a pad on, use your pad irrespective of whether they could physically get there or not. 

Katie Featherstone (22:17)
So exactly. So once someone is distressed by their continence care, that can absolutely lead to other consequences. They can be labelled as a person with a later form of dementia, seen as having behavioural psychological features of dementia that can lead to their discharge, being delayed, not being able to go home, perhaps even to a more kind of psychiatric venue, being seen as more appropriate for that person. And yes, and they might end up being transferred to longer term care. So this small aspect or seemingly small aspect of everyday care is really, really critical to the person, but also to that to their future potential and to living well.

Helen Saul (23:06)
There are some sad similarities between continence care in hospitals and in the community. Suzy, caring for her mother, also felt that continence care was undervalued. 

Suzy Webster (23:18)
I can honestly say that no health professional or social care professional ever asked my mum about her continence needs, ever. It was always a bit of a, it felt like something people never really wanted to ask. So now, in the latest stages of mum's dementia, the district nurse might ask. And she did recently, a new district nurse. Is your mum a pad wearer? Is she incontinent both ends? So the type of language that people use, it doesn't invite you to have those conversations really. They’re quite closed questions and kind of we don't really want to know, but we'll ask the question anyway because it's on our tick list.

Helen Saul (24:08)
So Zena, do you see parallels between continence care for people living with dementia in the community and Katie's findings in hospital? 

Zena Aldridge (24:15)
I think there absolutely are so many parallels to draw upon. I think as we've already said, a lot of people end up in care homes because they have been deemed as incontinent, whether it be in the community setting or in an acute setting. And so, again, there is this view of containment and just catching the volume of fluid or feces that's actually passed. And so, therefore, people's dignity is not factored into that. What their most appropriate product for them might be very different to what they're being prescribed, for example. They may not have even had an appropriate assessment for the type of pads that they're being prescribed. So there's a lot of evidence, and certainly in my own clinical practice, I've seen a lot of people with dementia who manage to wear pull up incontinence pads and can manage those independently. So they're able to take themselves to the bathroom. They can pull them up and down as if they were normal underwear, and then it promotes their dignity. Yet often what's prescribed is pads and pull up pads, which are actually really difficult for people to do independently. Often you need two pairs of hands, sometimes to manage them, particularly if you've got mobility and dexterity issues. So that immediately means that they have to have someone aid them with their continence, if should they go to the toilet, you know, and manage the personal care. And certainly in the community, again, we still have a lot of families who haven't had those assessments. So they're going to the chemist to buy their own products, for example, because they don't know that there are other options available to them. They don't know that there are opportunities to improve continence and how to do that effectively. 

One of the things we haven't mentioned is the fact that actually for those spousal carers, intimacy is really affected by continence. And if someone is incontinent, it makes it sometimes very, very difficult for them to share a bed, to remain intimate and have that companionship, but actually is so vital as a human right, an instinct, whether you have dementia or not. And so it's not just about the physical and emotional aspects. It's so much wider than that and broader. And I think we have to look at it in those terms. And we do need to start moving away from this phrase of deeming people incontinent. We need to say, how do we keep people continent, as Cameron rightly said, very much in the onset, because that has to be the priority. We also structure services so that what happens in care homes in the community is often, it's a funding issue. So people are given the cheapest products to meet their need effectively. And what we fail to see as a system is if incontinence becomes an issue, it means that someone is more likely to have health problems. They might have compromised skin integrity, UTIs. They're emotionally distressed, they're more likely to go into residential care. So the cost to the system is vast if we don't get this right. But it's seen in isolation as opposed to seeing part of a wider issue that we can have some control over and improve people's dignity and well-being. So it feels to me like this is a very overlooked area of care and it's a complete failing, not only in terms of compromised dignity, but in looking at the health and social care system as a whole, where we don't look at cause and effect, we just look at what the outcome is and we we try and find a solution in a very reactive way as opposed to being proactive. So there are benefits not only to the patients and their families, but there are benefits to the system in getting this right. And I guess a lot of clinicians would not want to be seeing people compromised with their dignity, but they may not know what else to do. They may not have those skills and knowledge. So I think there is still a big training issue that's required. 

Karen Harrison Dening (28:01)
Can I just add something there, Helen? I think it's really interesting. I think a lot of the sort of national reports and tragedies that Katie has alluded to in her background literature to the study, whereby staff need more training, more education, they need to understand what person-centred-care means to an individual. But I think that organisationally there has to be some responsibility because often it's not that these nurses and care staff lack compassion. The compassion fatigue is often because what they feel is the right thing to do is not organisationally supported. And I think that what this study did show was that you're looking at a workforce that were incredibly stretched in terms of time and staff:patient ratios. We need to look at higher staffing ratios so that we can actually then logically say we will no longer manage continence as a task focused activity that fits in around other priorities. It should be one of the main priorities because it's fundamental to that person's well-being, and I'm sure that they'd probably get by several days without some of the medications in the medication round before they'd get get by without actually being promoted to be mobile, to be continent, to eat, to drink properly. 

Zena Aldridge (29:30)
I guess the other issue in that, though, Karen, is it's about risk in those environments as well. And that pursuance of minimising risk, isn't it.

Karen Harrison Dening (29.38)
In any risk assessment, you balance the costs and the benefits. And I think that who decided that the cost that could be sacrificed and that would be mobility, continence and ability to get back home in preference for stopping potentially the odd fall? I think that's a massive imbalance. 

Katie Featherstone (30:02)
Absolutely. The policy around managing falls is a massive pressure the staff feel every shift. And that sense of ‘we must have no falls’. So these policies that are absolutely well-meaning have really powerful consequences for ward staff in terms of they feel they cannot have any falls during their shift. They feel that very, very powerfully. So absolutely. So that turns into a culture where actually we'd rather everybody stayed in bed. And that's how those policies turn into what we have now in terms of pad cultures. So I think the NHS and institutions, we really need to start to think about when these policies are put in place. We really need to examine and watch them carefully to see how they impact on these cultures of care because they have very powerful impacts and consequences that we really can't predict until we start to look at them in detail. But absolutely, as both Karen and Zena said, it has incredibly powerful and negative consequences on this incredibly sensitive population of people living with dementia, but also really powerful and negative consequences for ward staff who absolutely want to give the best care but feel they the pressures of the institution mean they must work in particular ways. 

Helen Saul (31:22)
Thank you, Katie. Suzy made a similar point about the pressures that staff can be under in her mother's case in the community. 

Suzy Webster (31:31)
Today, a carer has come for 20 minutes to take mum to the commode. And give her her lunch. So in 20 minutes that's the care that Mum receives and there'll be days where Mum needs extra care on the toilet or a bit longer on the toilet and she would probably miss her lunch because of that. Carers are constantly trying to weigh up ‘Do I help this person? Do I get them off the commode now or do I get their lunch now?’ So within a system that doesn't manage continence, well, they ask about it. It becomes part of the personal care for somebody, but it's never really factored in in terms of time. The clock is ticking all the time. 

Helen Saul (32:23)
Zena, I'm wondering how far some of these problems are inevitable given the precious stuff under?

Zena Aldridge (32:29)
I think, again, sometimes it takes 5 minutes for some people to mobilize, to get off their chair, to come and open the door for a carer. So you've already lost 5 minutes before you even get to go to walk down to the bathroom. And I started my career as a home carer, but that was in the days when a minimum visit was an hour long. Well, an hour long gives you plenty of opportunity to ensure that that person can relax, go to the toilet, have something to eat, have something to drink, actually do a bit of social stimulation and engagement with them as well, because that's something that's very much lacking in any of these interventions. often. We know that we don't have enough care home placements now, let alone prospectively when we're going to have an exponential increase in older people who are living with complex conditions. So we have got to invest in the social care system far more effectively. We have recognising that it is complex care that these people are required to do, but how can you do complex care in 15 minutes? It's just not doable. And the carers, you know I have a huge, a huge respect for them and it must be very, very difficult to go home at night and feel like you've done a satisfactory job when you know that all you've been doing is watching the clock and not doing what you would hope to do for those individuals. And that's fundamental to something that we need to change more broadly, not just in managing continence care, but in managing care in the community more appropriately per say, really.

Helen Saul (33:33)
That is quite a challenge. So to finish off, I'd like to ask each of you what one thing would make things better for this very vulnerable group of people. We'll start with Suzy. 

Suzy Webster (34:06)
Having those open conversations would have really helped us as a family. We were dealing with mum's continence issues every day, so it wasn't new to us. It wasn't there wasn't anything that was going to be shocking for us because we were trying to manage and manage things ourselves. So I think if we’d had more open conversations and more support at the start, it would have made our lives a lot easier. 

Helen Saul (34:38)
And so, Karen, what do you think would make a difference? 

Karen Harrison Dening (34:41)
I would like to see higher numbers of staff, whether that be in a social care setting, in an acute hospital setting. And I'd like to see a very realistic staffing versus patient ratio, so that staff have more time to deliver care that's appropriate to that person's needs. In tandem with that, more training and education and going back to basics, good quality patient care. But also I'd like to see a higher proportion of qualified versus unqualified. I'd like to see qualified nurses actively recruited that want to work with people with dementia. A lot of acute hospital nurses don't think people with dementia should be on their wards. You know, community care's getting scarcer and scarcer and tighter and tighter. Where are these people going to go that have complex needs? It's inevitable they're going to end up in hospital. So I think higher staffing patient ratios so that you can have more power to deliver good person-centred, individualised care. 

Helen Saul (34:38)
Thank you. Katie?

Katie Featherstone (35:57)
What we hear a lot in the acute setting is people living with dementia don't belong here, and they're seen as a burden on the service and the system. But actually they're the largest populations in our acute wards. They're there with additional acute conditions that are absolutely treatable. So they should be treated by experts and should be returning home in a better state than they arrived. So I think understanding the message that this population belong in the acute setting, they should be given the best care possible - if we could get that message across and through all the NHS hospitals, that would be amazing. But I think there's also something else about the sense that this population are incredibly sensitive, and so bedside care that, the part of care that is really neglected in the acute setting needs to be prioritised. And the skills in delivering sensitive person-centred bedside care. Continents care is central, but that also links to delivering medicines, mealtimes and hydration, intimate care. All of those things are so fundamental - they’re essential care, but that really has very little priority or little status in the acute setting. And I think we need to shift that to be central. 

Helen Saul (37:29)
Thank you. And Zena?

Zena Aldridge (37:30)
I think we just need a societal cultural shift to value older people in general, not just people with dementia. You know, I think if younger people are faced with the same challenges, it's addressed. But as a society, we devalue older people. They almost have to endure a social death before their inevitable physical death. And so consequently, there is no value placed on managing their dignity and well-being. I think it goes beyond a change in health and social care. Societally, we do need to make a real shift because we are all going to get older, hopefully, God willing, you know, and I don't want this care for myself. I don't want it for my family. And I would hope that my children wouldn't want it for me either. So I think that's where we've got to go with this. 

Helen Saul (37:29)
Thank you, Zena. That's a strong note to end this podcast. So to sum up some key messages, we've heard the continence problems that are not well managed threaten the dignity and human rights of people living with dementia and could mean they go into residential care earlier than necessary. Continence problems are not inevitable. Good care starts with a continence assessment and the right continence products for each individual. Continence needs to be promoted for as long as possible, and open communication using appropriate language is essential. Pad culture in hospitals needs to be challenged, continence care needs to be respected and prioritised, which means having realistic staff to patient ratios, and particularly an increase in qualified staff to train and act as role models for more junior staff in relation to continence care. Hospitals need to support staff to deliver complex, sensitive, person-centred bedside care. 

In the community, care workers need more time with people living with dementia to meet this most basic need. And beyond health and social care, we need a shift in the way we as a society value older people. Lots of food for thought. 

So Suzy Webster, Zena Aldridge, Karen Harrison Dening and Katie Featherstone, very many thanks for talking to us. 

This was an episode of the NIHR podcast. I'm Helen Saul and thank you for listening. If you have any thoughts or comments on this or any other episodes, please contact us on CED@nihr.ac.uk or via our Twitter channel at NIHRr Evidence. For more information about NIHR Evidence and to see our themed review on continence care and dementia, you can visit our website, which is evidence.nihr.ac.uk.