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...

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