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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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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Treat others as you would wish to be treated yourself

Ask most people caring for a loved one with dementia what they dread the most, and a common theme will probably be hospital admission. For so many reasons, hospitals and dementia patients are a combination that is fraught with problems, and whilst pockets of good practice do exist in the NHS, far too often the experience that people with dementia and their families have is one characterised by a lack of understanding, poor care and even neglect.

Moving anyone with dementia to a new environment, let alone one that is so alien to them, will inevitably cause problems. People with dementia generally do not react well to any change, and most hospitals are not dementia friendly; they are busy, noisy, imposing places with clinical smells, high-tech equipment and a constant stream of new faces.

If an illness makes hospital admission unavoidable, the person with dementia will often be in a more confused state anyway due to infection, and that, combined with the environment they find themselves in and staff who are so busy that they do not have time to spend with patients, is a powder keg situation. Dementia patients often deteriorate in hospitals; even if the hospital successfully tackles the infection that they were admitted with, pressure sores can develop through lack of turns and regular pad changing, they can lose weight from limited or non-existent feeding of quality food (my father shockingly lost half his body-weight during a 3-month stay in an elderly mentally infirm ward), become dehydrated once they are taken off IV fluids, and their alertness and general cognition can markedly decline, possibly never then returning to its original state once they are discharged.

It is well known that hospital staff are under huge pressure. On the occasions that my father was admitted to hospital with either pneumonia or bladder infections, he very rarely had the same staff member looking after him consistently, staff were grossly over-stretched, and as a family we were spending all day every day with him just to make sure that he was fed, shaved, comforted and had all his needs met. This often also involved us demanding to see doctors or other professionals just to ensure that dad had the assessments he needed in a timely fashion, and that his care was of the same standard as someone who can articulate what they are feeling and needing.

Not only can you legitimately argue that families should not have to do this, the greatest concern is surely for the many people who have no family to speak up for them. Dementia patients deserve the same level of care as any other patient, and in fact often need significant extra attention to ensure that their needs, both physical and emotional, are met, thus giving them the best possible chance of recovery.

So how do you improve the way hospitals treat patients with dementia? Staff training is a huge issue, with staff across all disciplines having very patchy knowledge and understanding of dementia. Specialist environments need to be created that offer reassurance and extra assistance for dementia patients, and there needs to be better co-ordination across departments to ensure that the person receives all the treatment that they require, and has a discharge planned that is appropriate for their needs.

Empathetic and compassionate stimulation is important, as are therapies that engage the person with something that they enjoy. Equally vital to a successful recovery is good nutrition and hydration, which is something I wrote about in more detail here. Freshly prepared, appetising and well-presented food is needed not just for good health, but because of the feel-good factor it provides for a person’s wellbeing. It needs to be remembered that a good meal can be the highlight of someone’s day, and when those days are long and arduous, there is nothing that is more welcome.

Dementia patients often cannot articulate when they are hungry or need help to eat, and when they need assistance, this can often be very time consuming for staff if the person is to be given the quantity of food they want and need. Swallowing problems are also common as dementia progresses, and both the quality and consistency of food and the way in which the person is fed become acutely important – if any of these elements are wrong, the person can aspirate (where something taken orally goes into the lungs instead of the stomach), which can result in a potentially fatal pneumonia.

Some hospitals are becoming more dementia friendly. Taking dementia patients off of acute medical wards and into specialist wards, where they still receive expert clinical care but where staff are specifically trained in dementia, is a step in the right direction. Befriending schemes can provide a lifeline to dementia patients to reduce isolation, increase stimulation and provide non-drug related therapy. Another excellent initiative is the Butterfly Scheme, which is already in use in some hospitals. It is designed to alert all staff to the fact that someone has dementia, and through the training they have received, staff offer a specific five-point targeted response to the Butterfly symbol, enabling them to meet the additional needs of someone with dementia . ‘This is me’ leaflets are also useful in providing background information for staff, although these will only be truly effective if staff have the time to both digest that information and then act on it.

Hospitals provide life-saving treatments every day, and on many occasions the prompt and expert care that my father received saved his life and gave us precious extra years with him, but the worry of having him in hospital was immense, not just from the point of view of whether he would recover or not, but also because of concerns about the treatment and care he would receive whilst he was there. The pureed food he was given was revolting, pressure sores become worse rather than better (even though he was given an air-flow mattress), his agitation (from being in bed, hungry and ignored) would be misinterpreted as pain and inappropriate medication given as a result, he was expected to answer questions and give information that he clearly did not have the cognitive ability to provide, and he endured a constant stream of new faces, noise and confusion, often being moved to different wards very late at night.

I would like to think that the NHS, with so many caring people working for it, can provide a far higher and more consistent level of care for dementia patients across all hospitals in the UK. Most staff want to be facilitated to do their absolute best for their patients, particularly the most vulnerable, people with dementia deserve care that gives them dignity, respect, comfort and a speedy recovery, and families want reassurance and faith that everything that can be done for their loved one is done, and done to an exceptional level.

As my father always said, treat others as you would wish to be treated yourself.

Until next time...

You can follow me on Twitter: @bethyb1886

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