The private world of incontinence

With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at continence.

In June 2013 I wrote a blog entitled ‘An urgent need to understand’, which talked about some of the experiences we’d had with my dad’s incontinence and ways in which a person can be supported to maintain their continence. In that blog I said:

“The devastation that incontinence can cause both the person with it, and potentially a spouse or family member who is caring for them, is immense. The more private a person is the harder it will be felt, which was certainly true for my father, who was incontinent for nine years.” 

Continence, perhaps more than any other issue, is strongly linked to privacy. In my experiences as a mum I know that not long after a child is potty trained they begin to want privacy when going to the toilet. Such privacy soon becomes the norm for the rest of their life, unless incontinence accompanies a progressive health condition like dementia, in which case needing the support of another person, whether they are your own family or a health or care professional, becomes the new norm. Just because it’s the norm, however, doesn’t mean it feels normal or will ever feel normal.

Continence problems are strongly associated with ageing, but certainly don’t exclusively affect older people. Last month marked World Continence Week, with a statistic that bladder weakness alone affects 1 in 3 people and is more common than hayfever.

Continence has come onto my radar many times since I wrote ‘An urgent need to understand’. Professionally this has predominately come through my training and mentoring consultancy work, with one particularly striking example being when homecare staff from one of my consultancy clients came to me to discuss a lady living with dementia who was repeatedly developing bladder infections and soiling herself. 

The infections increased the lady’s confusion, and despite trying to provide optimal support staff said that they felt they were failing this lady every time she got another infection. I encouraged staff to really think about how the support being provided was responding to this lady over the course of each 24-hour period. Care staff often only analyse the time they spend with the people they support, rather than what is happening when they aren’t there.

It transpired that this lady was only using the toilet when staff weren’t present, and would often put off going to the toilet for many hours purely because she was confused about the time care workers would visit and concerned about her privacy (staff learnt that this lady had had a bad experience with a previous care worker during a trip to the toilet).

Many different approaches were taken to resolve this issue, including ensuring the lady had a dementia clock so that she knew what the time was, a personalised schedule that was clear to her for when her care visits were, and a lock on her toilet door (that could be opened from the outside in an emergency).

Simple measures, but alongside staff really understanding this lady’s need for privacy for the first time they proved to be the difference in supporting this lady to use the toilet more regularly, thus reducing the recurrent bladder infections she had and improving her quality of life as she soiled herself less. 

I would always encourage anyone supporting a person who is struggling with continence to think about the bigger picture, considering how the environment and the person’s routines and plans for the day are affecting their continence. If the person’s day-to-day life isn’t supporting them to use the toilet as often as they need to, problems are inevitable.

Continence hasn’t just come onto my radar through my experiences with my dad and my work, however. On a personal level, continence is something that my midwife was really open with me about during my pre and post-natal care when I had our daughter. 

Any lady who’s has a baby will have heard the iconic words, “Do your pelvic floor exercises!” Pelvic floor exercises aren’t just for women who’ve recently had a baby though. I’d argue that they are important throughout all of life, as the stat from World Continence Week ‘Prolapse can affect half of all women over 50’ shows. Although pelvic floor exercises alone won’t cure prolapse, they are often recommended alongside other treatments.

I’ve always felt that preventing incontinence is a great deal easier than treating the physical, mental and emotional effects of incontinence purely because incontinence is about so much more than just wearing a pad. As I said in my ‘An urgent need to understand’ blog:

“Changing our attitudes towards continence, and breaking down the taboo’s associated with going to the toilet, must be a key priority if we are to improve the care provided to everyone who is living with dementia.”

Until next time...

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Being a pain detective

One of the questions I’m asked a lot in relation to dementia care is around how we find out if someone is in pain. In advanced dementia, when potentially a person cannot articulate clearly if they are in pain, and if they are, where that pain is located, it can be really difficult for those caring for them to ensure that they have the care they need.

We experienced examples of this with my dad. When he was first diagnosed with vascular dementia he was still walking and talking and generally getting into various scrapes. He had a few trips to A&E to be patched up when he fell, including one occasion when he split a blood vessel in his head and had to have emergency staples to close the wound (and when I say emergency I mean that there was no time for local anaesthetic – dad didn’t even flinch).

He was becoming increasing unsteady on his feet and aside from the effect dementia was having on his body, we also knew that there was an unrelated physical cause: Dad’s knee was gradually wearing away - he had been due a knee replacement operation for many years. Eventually he became unable to articulate when his knee was particularly painful or ask for pain relief, and with the risk posed by general anaesthetic he wasn’t suitable for the replacement operation.

It became a ‘guessing game’ to work out when he needed pain relief. On the one hand the nurses looking after him felt he was more likely to need it when he was walking (which he frequently did and couldn’t be dissuaded from), but we also knew that for many years previously dad had often complained about his knee more when he did nothing and it began to ‘seize up’ – hence often being restless in bed.

My dad was never one to make a fuss or take medication unless absolutely necessary (indigestion remedies and throat pastels aside!) and that didn’t change when he was living with dementia. He would dismiss any suggestion that he was struggling with his knee or that walking had become painful, then one day he just stopped walking – we put it down to the knee finally giving up and potentially his brain also giving up on trying to walk.

Of course pain relief problems don’t just exist in relation to joints. Dad would develop bladder infections: Anyone who’s had a UTI will know that they can be very painful, and their effects can rapidly escalate if a person is left in a soiled incontinence pad (see my blog post on incontinence here). Dad would sometimes hold his head – did that mean he had a headache? The atmosphere in his care home was often very oppressive, and occasionally family members would have headaches whilst visiting dad, so it wasn’t inconceivable that he may have one too. When dad became unwell with upper respiratory infections he was often given paracetamol, mostly to control his temperature, but it is highly likely that he was also suffering with a sore throat and possibly ear or sinus pain too; we never knew if his low dose of paracetamol was enough to give him relief from all of his symptoms.

However, perhaps the most startling example of the ‘guessing game’ relating to dad’s pain management came during one particular inpatient experience. Dad was in hospital for pneumonia and had recovered quite well from initially being very ill. The ward staff were used to dad being quiet, but as he began to feel better he became more vocal. On routinely checking dad’s notes we noticed he’d been written up for morphine and was being given other pain medication. We asked why, and were told that as he was making so much noise he must be in pain.

We pointed out that dad was most likely hungry. We suggested giving him some food (something hospital staff were generally very reluctant to do due to his swallowing problem). Unsurprisingly, once his tummy was full, dad was contented. The noise he was making was the only way he knew to articulate his hunger, which only goes to prove how easy it is to misinterpret what someone with dementia is trying to alert you to when they are unable to communicate that with clear conversation.

The key to understanding when someone with dementia is in pain is often down to knowledge of the person. If they can speak to you clearly and concisely that’s great, and certainly in the earlier stages of dementia that should be possible, but one of the problems we encountered with my dad was the differences that developed between what he said and what he meant.

So for example, someone can say they are not in pain when they actually are. They aren’t trying to deliberately mislead you; they may simply not understand the question, be unable to find the words to reply accurately, or indeed may not want to be a burden or ‘put you to any trouble’. They may not recognise a feeling they have as a pain, or could become confused about what is meant by the word pain.

The key to being a good pain detective is multifaceted. You need to understand the person’s history – do they have any known conditions or problems that would suggest that they could be in pain? Have there been any recent incidents or infections that could be causing pain, or is there any possibility that there could be but you don’t know about them? Has their behaviour pattern changed? Have you studied their expressions and body language?

The last two points are especially important when you are trying to detect pain. If you are examining the person, watch them closely to see if they behave unusually (that is unusually for them), or produce facial expressions or other body language that isn’t usual for them. Holding their hand whilst doing a physical examination may produce involuntary movements from them that suggest pain in the area you are examining.

It’s important never to assume someone is in pain, but also not to assume they aren’t if anything about their movement, mood, interaction or general health and wellbeing has changed. People have been known to continue moving when they have a broken bone and for that broken bone to go unnoticed as a result. It’s also important not to overmedicate, or assume that palliative pain relief is needed when any doubt exists as to whether someone is nearing the end of their life.

The side effects of any pain relief medication also need to be taken into account if other changes in a person become evident during the time they are receiving this medication. Anything that is likely to make someone drowsy or upset their stomach will mean they require close supervision. Medication should also be regularly reviewed to see if it is still necessary; in my view it is poor practice to simply leave a person on a medication unless there is a clear need for that medication.

We should never lose sight of the fact that just because someone is living with dementia it doesn’t mean that they don’t feel physical pain. Not being able to articulate something doesn’t mean you don’t feel it and aren’t longing for someone to make that pain go away. Our role is to help people with dementia to have the best quality of life possible, and minimising physical pain is a big part of that.

Until next time...

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On the move

For everyone who is fortunate enough to be able to move around independently, I would estimate that most take that for granted. Likewise, I would suggest that one of the key ideas people have about ageing is that immobility is likely to come hand in hand with getting older.

Along with wearing dentures, losing your driving licence, becoming incontinent and living with dementia, immobility is right up there in most people’s vision of what ‘being old’ is like. It’s a hugely stigmatised view of course, since many people live a very long life without encountering any of these problems. Indeed I once knew a lady in her 90’s who was still driving her little Mini around, was perfectly able to get to the toilet when she required it, still had all her own teeth, and most definitely didn’t have dementia.

Nevertheless, the image of the older person with their walking stick or zimmer frame looms large in most people’s vision of ageing and indeed of living with dementia. It is worth pointing out, however, that I’ve known many people who never really had mobility problems during their years with dementia, and only became confided to bed when they became ill with an infection that they died from shortly afterwards.

Supporting mobility is a key aspect of helping a person to live well with dementia. The exercise is good for their general health, the independence is good for their mind, and mobility ensures a sense of normality is retained when many other aspects of their life may be changing. That’s not to say that being mobile doesn’t present risks, particularly around the desire to walk a lot (as I wrote about here) and the potential for falls and accidents that can result in broken bones, cuts and bruises. All of these can take a longer to heal for an older person, and if a hip is seriously broken it can be a threat to someone’s life.

These risk factors often lead to worries about a person’s safety and security if their mobility is actively encouraged, but we shouldn’t become too risk adverse. Mobility is vital part of a person’s life that as families and professionals we should make sure we support. Keeping people seated or in bed simply to protect them from the potential for injury is likely to do a huge amount of harm to their physical and mental wellbeing, and even more so if restraints are used.

Seeing immobility as some kind of cosy cotton wool world is totally inaccurate. If someone becomes immobile it produces a whole range of added problems, most notably around pressure sores and increased risk of infections. My father had far more chest infections when he became immobile, and his GP was firmly of the belief that his lack of movement was contributing to his inability to effectively remove the secretions from his airways. Imagine being unwell with chest, bladder or stomach problems and unable to move – a fairly unpleasant thought for anyone to contemplate.

Maintaining an individual’s mobility when they are living with dementia does, however, produce challenges. If a person becomes unsteady on their feet and requires a walking aid, trying to support them to learn how to use that correctly can be very difficult. Keeping people mobile if they are beginning to struggle with independent mobility also requires a huge amount of commitment from professionals and/or family members.

In care settings, including hospitals, you need high staffing levels to ensure that there is enough support to help people to move around. Movement often takes time and patience and cannot be rushed. In almost every care setting there are never enough physiotherapists, occupational therapists and indeed supporting care staff who are ready, willing and able to help someone to walk down the corridor, go to the loo or indeed venture further.

Even if an individual does eventually become immobile, that doesn’t mean that they should be dumped in a room and left there all day, or excluded from events or activities simply because no one has time to give them the opportunity to move. One of the big problems in my dad’s care home was always the lack of wheelchairs; you would often have to beg and borrow in order to find a wheelchair for him to be moved from his room. It would be utterly unacceptable for someone to not have clean clothes or food in a care home, but apparently it’s perfectly acceptable to restrict their chance to move around just because they are unable to walk anymore.

Immobility has huge implications for a person’s quality of life. It can affect the opportunities they have for engagement, fun, new experiences and environments, and the pursuit of hobbies and interests. It is also likely to affect emotions, often producing frustration, anger or boredom. Indeed, whenever you feel someone who is immobile is producing ‘challenging behaviour’ ask yourself how you might feel in their circumstances. Some people can even lose the will to live through immobility.

For many years the Paralympic movement has shown us what people can do when they are restricted by mobility or movement (see my blog on the positive approach of Paralympians), yet we often see older people, people living in care homes and particularly people with dementia, assume immobility is a natural part of their life and simply give up on helping them to maintain their mobility. I’m not suggesting our older generations are likely to want to become Olympians (well you never know!), but they should be given every opportunity to keep moving, however much they can and for as long as they can. After all, wouldn’t you want the same chance afforded to you?

Until next time...

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An urgent need to understand

There are a few ‘taboo’ subjects in dementia care. Taboo because we find them embarrassing, too personal or just uncomfortable to even consider. Continence is one of them.

Dementia isn’t a disease that respects the delicate workings of the bladder and bowel. Those vital signals that the brain needs to allow us to relieve ourselves comfortably and in privacy are often lost as dementia progresses. The devastation that incontinence can cause both the person with it, and potentially a spouse or family member who is caring for them, is immense. The more private a person is the harder it will be felt, which was certainly true for my father, who was incontinent for nine years. In his case it came about as a result of a crisis point in his dementia, when he had a large stroke and ended up in hospital (as I wrote about here).

He struggled to remain continent in the busy, unfamiliar hospital environment, and once he was moved into a residential care home he was largely doubly incontinent. Sometimes he was able to get to the toilet in time, or use a bottle, but more often than not he needed a pad. Not that dad himself understood the need for the pad, and he continuously removed it, leading to numerous accidents and changes of clothing.

By the time he was moved into nursing care, and then lost his ability to walk, he was fully incontinent and relying totally on pads. Key factors during those later years were spotting when his pad needed changing, ensuring it was done promptly, that he was thoroughly cleaned and dried, and then a new pad being available. Extraordinarily, at one point a directive was issued to the care home by the local health authority saying that they would only be supplied with a limited number of pads, leaving each resident with an allocation of 3 pads per 24 hours.

We fought against this rationing, eventually getting it overturned. In my view it is a basic human right to be kept clean and dry. It goes against every notion of dignity to restrict how many pads a person can have. If a baby was left in a dirty nappy, that would be considered child abuse. The same principles must apply to the care of adults.

Being left in wet or soiled pads increases the risk of UTI’s and other infections, pressure sores and associated skin problems, all of which are awful for the person affected. Moreover, as a money saving exercise rationing pads is entirely counterproductive, since the treatments needed to combat the effects are likely to cost far more. In someone with dementia, the discomfort of sitting in a soiled pad could also encourage them to put their hand into their pad, potentially getting faeces on their hands and spreading germs.

Accurately assessing someone for incontinence products is difficult since the very nature of incontinence is that it is unpredictable, and dependent on factors such as food and drink intake, the side-effects of medications, and unexpected issues like tummy bugs. Imagine an outbreak of diarrhoea and vomiting in a care home where most residents are immobile and incontinence pads have been restricted. We cannot condemn staff for providing poor care if they are not given the basic materials needed to provide good care.

That said, incontinence care isn’t just about having enough pads, how those pads are used is also vital. If care staff develop poor practices, like leaving someone in wet or soiled pads, or not cleaning and drying the person properly when they change a pad, all the supplies of pads in the world won’t help. Likewise, double padding, where two absorbent products are placed on top of each other, is another example of poor care. This is often done as a short-cut to avoid having to do a full-blow change every time a pad is soiled, but it is extremely bad practice since it is very uncomfortable for the person wearing them, will increase the risk of pressure sores, heat rashes and skin problems, and means that two products are likely to be contaminated.

Of course ideally you want to prevent incontinence to begin with, and I feel that in relation to my father he was rather written off in this regard. There is a prevailing attitude that incontinence is a natural part of dementia, but we need a far greater emphasis on helping people to remain continent for as long as possible.

So how do you help someone with dementia to remain continent? Mobility is vital. They need help to maintain their independence, using mobility aids if necessary, and these need to be readily available and able to fit inside the toilet cubical. Environmental factors are also extremely important. Is the route to the toilet clearly marked and free of obstacles? Is the signage clear (the word ‘toilet’ and a picture of a toilet, rather than male and female signs). Once inside the toilet cubical, is it clear where the toilet actually is (colour contrast rails and seat)? See the work of Stirling University for more tips on designing dementia friendly environments http://dementia.stir.ac.uk/virtualhome.

The other key issue in helping people to remain continent is to have assistance readily available. Having someone to help you to the toilet, or bring you a commode, may be all a person needs to remain continent. Like so many aspects of dementia care, time, patience, continuity of care and good communication are vital in promoting continence.

Once you get to know someone you may be able to anticipate when they need to go to the loo by picking up on key signs like restlessness, and can gently offer some support to get there. They may also feel more able to talk or motion about needing the toilet if they have continuity of care. Being able to estimate the urgency of a person's need for the toilet is a key skill, as is not becoming fatigued by someone with dementia repeatedly asking for the toilet, even when they have just been, which should never be seen as a deliberate attempt to mislead those charged with their care.

Someone with dementia can easily become confused about needing the toilet. They may forget they have been, may genuinely need to go again, or feel anxious about getting there in time, even if they don’t presently feel the need to go. Persistently asking for the toilet, and then not doing anything once there, can also result from being bored or needing human contact, hence why it is important to offer someone with dementia meaningful activity to keep them engaged and promote a good quality of life.

People with dementia can easily lose continence if they aren’t supported. They may even know that they need the toilet, but aren’t able to facilitate that due to their dementia and a lack of support. Changing our attitudes towards continence, and breaking down the taboo’s associated with going to the toilet, must be a key priority if we are to improve the care provided to everyone who is living with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886

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When illness strikes…

Dementia brings so many concerns for the wellbeing of those who are living with it, not least the risk posed by infections. Whenever my father was struck down by a bug, suddenly we would be plunged into a world of relentless uncertainty, desperately hoping that he would make it through his illness, always mindful of the possibility that he would not.  

One of the most striking things about dementia is the physical decline that it can bring. My father went from being a man with a very imposing physique to someone whose body shrunk to less than half its size. He went from walking constantly to being unable to move independently, from feeding himself to being entirely dependent on others for his food and drink intake. He lost the fullness in his face as a result of having no teeth, his limbs became bony, his skin very fragile and prone to bruising and tearing, and he was doubly incontinent for the last nine years of his life.

This physical decline leaves the person much more susceptible to infections that can be potentially life-threatening. Losing weight makes the body more vulnerable generally, and losing mobility makes pressure sores more likely and respiratory illnesses more difficult to shake off. Swallowing problems greatly increase the risk of pneumonia as a result of choking, or dehydration from not being able to intake enough fluids. Lack of fluids means an increased risk of urinary tract infections, and incontinence doesn't help with that either. Incontinence can also contribute to pressure sores if the skin is not kept clean and dry, and in a person with fragile skin all over their body, skin infections as a result of cuts or scratches are also possible.

In fact if you sit and think about just how many illnesses can be associated with the physical decline that dementia brings it is actually frightening. Over my father’s 19 years with dementia, and particularly during the last few years when he became very frail, we experienced all of the above problems. It comes as no surprise to me that so many people with dementia end up in hospital; my dad needed hospital treatment for both pneumonias and UTIs during the last 9 years of his life. This involved IV antibiotics and fluids, plus oxygen therapy, suction and chest physio for the pneumonias and catheters for the UTIs.

Thankfully, given the very mixed experiences people with dementia can have in hospital (as I wrote about here), my father was mostly treated in his care home with oral antibiotics. The routine prescription of antibiotics may be increasingly controversial now, but in my dad’s case they certainly gave us additional precious time with him.

Illnesses in people with dementia, apart from being very distressing to watch, often make dementia symptoms much worse. Infections contribute hugely to increased confusion and disorientation, affect communication, and can result in a loss of independence in areas of personal care, continence and eating and drink that is not always regained. Sadly, however, it is almost impossible to avoid a loved one becoming ill.

Care staff are frequently compelled to come into work when they are unwell, since they will either not be paid or their employers will be short-staffed if they stay at home. Visitors often come into care homes and hospitals harbouring illnesses, and requests to stay away if you are unwell go unheeded. I distinctly remember encountering disgruntled relatives outside a care home I arrived at one day, unhappy that they were unable to visit their loved one due to the home experiencing an outbreak of diarrhoea and vomiting.

I am not suggesting that care homes can become sealed germ free places, clearly that is impossible, but halting the spread of illnesses within health and social care settings, and the wider community, has to be the overriding aim. It should never be the case that people with dementia are considered a burden that can be reduced by allowing illnesses to proliferate, putting the most vulnerable at risk of serious complications and possibly early death.

We all suffer when we are unwell with an infection, but people with dementia often struggle far more because they cannot articulate how they feel, what help they need or the treatments that they would want. In those circumstances they need particularly specialised care delivered by knowledgeable and sympathetic professionals, whose priority is to give that person the most effective care possible so that they have the best chance of recovery.

Sadly some illnesses are too severe to recover from – the last pneumonia my father had was one too many for his frail body and led to a slow decline until he passed away a month later. We always knew the day would come when he could no longer fight, and given his physical frailties and propensity for chest infections, it was highly likely that pneumonia would end his life. Understandably, having worked this out many years before he passed away, every time he was ill that chilling realisation that this could be his last fight loomed large on the horizon.

Of course you never know when these illnesses will strike – my dad had severe infections in the summer as well as the winter - but I know that the majority of carers are fearful of winter ills the most. They often hit our elderly, vulnerable loved ones the hardest, and not just in care homes either – many people living in their own homes struggle to keep warm enough and become more susceptible to respiratory problems as a result. So whilst us younger people are all striving to keep ourselves well, spare a thought for all those carers with frail relatives for whom this is a particularly worrying time of year. If anything persuades you to be mindful of good hand hygiene and infection control, I hope that preserving the wellbeing of our most vulnerable people is it.

Until next time...

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