Still hard to swallow

(A note before I begin this blog: You should not consider anything written in this blog as medical advice for you or anyone you care for).

With over 200 blogs on D4Dementia now, some of them approaching 7 years old in May this year, 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 dysphagia (swallowing problems).

By a huge margin my most popular D4Dementia blog post is ‘Hard to swallow’, which charts the four years that my dad lived with dysphagia alongside his vascular dementia. In that blog I explained dysphagia as follows:

"Something that is sadly very common in advanced dementia is the decline of the swallowing reflex. The condition, known as dysphagia, is extremely distressing for both the person affected and those caring for them, and can be fatal, either directly through choking or indirectly by setting up aspiration pneumonia. 

"The uncontrollable coughing that often accompanies a swallowing problem, indicating that something taken orally has gone into the trachea (windpipe) instead of the oesophagus, can leave the person affected gasping for breath, red-faced and sweating. For anyone who has witnessed someone choking, it is a terrifying moment."

I wrote Hard to swallow in September 2012, less than 5 months after my dad had died from an aspiration pneumonia, so to say this is a topic close to my heart is an understatement. But it must also be remembered that with previous good support my dad lived reasonably well with dysphagia (and no teeth!), still enjoyed food and drinks and maintained mostly adequate levels of nutrition and hydration, so there is hope and positivity too. See my interview with Nourish by Jane Clarke for more insights into my dad's dysphagia.

In the years since dad died I have met numerous people who are living with dementia and dysphagia, and yet despite this swallowing problems are frequently the elephant in the room when thinking about the progression of dementia. Families often write to me, having read my Hard to swallow blog, saying that they simply had no idea that as their loved one’s dementia progressed they would develop swallowing problems.

As a result they feel unprepared, unsure of how to care for their loved one and, frankly, so frightened they worry about supporting their loved one to take anything orally, be that food, drinks or medication. Why we don’t talk about dysphagia more is a mystery to me - understanding how to support a person helps hugely in dispelling myths and calming fears. Dysphagia doesn’t have to be a watchword for unpalatable meals that look like vomit mush, or an undignified experience at every mealtime. As I said in my Hard to swallow blog: 

"Despite my father’s advanced dementia, the Speech and Language therapist was successful in assessing him when his swallowing problems were first identified… and gave us excellent advice that helped to give dad quality of life and give us confidence in caring for him."

That professional support is key, but as is so often the way as services are cut and becoming overstretched it can be support that is very hard to come by. Indeed, in some countries (I’ve had emails from around the world from families whose loved ones are living with dementia and dysphagia) such support doesn’t exist at all as someone who wrote to me from South America in 2016 explained:

"Unfortunately we don't have speech therapists who can guide me on how to handle my dad’s dysphagia. I import liquid thickeners to adjust the consistency of his drinks."

As if supporting a person with dysphagia isn’t daunting enough, to be in this position is intolerable. With such a lack of face-to-face professional support for many families, I hope that the tips and advice online - including those in my Hard to swallow blog - are helpful.

In the years since my dad died, my training and mentoring with care providers has enabled me to understand additional methods for supporting a person with dementia and dysphagia that go beyond those documented in my 2012 blog, and I wanted to share some of those here:

•   Straws can cause problems - Liquid drawn through a straw can often hit a person’s mouth faster than that taken without a straw, making straws potentially dangerous for some people with dysphagia. 

•   Be especially patient in helping the person to drink - Thickened drinks take many people with dysphagia longer than you might imagine to consume, and most thickeners also make drinks more filling. Therefore little and often is a really important motto for helping to keep a person with dysphagia hydrated.

•   Equally, for many people with dysphagia meals are often best provided little and often - The effort required to process food in the mouth and swallow it for a person with dysphagia is immense, far greater than for a person without dysphagia. So the idea of three set meals a day and those meals filling the person up isn’t a sensible approach. Try smaller portions, that the person can eat at their own pace in shorter periods of time, and follow up with further small portions throughout the day at times when the person is alert and correctly positioned upright to eat and drink.

•   Try using teaspoons to support a person to eat - This will naturally make each mouthful a smaller amount than larger cutlery will provide.

•   If the person you are supporting doesn’t like the taste of thickeners (and despite what the manufacturers say, thickeners do change the taste of foods and drinks), natural alternatives I’ve seen that are popular (though never tried with my dad) include smooth-mashed avocado, smooth peanut butter (providing the person isn’t allergic to nuts), thick Greek yogurt or kefir (if the person can tolerate dairy products), smooth-mashed banana and smooth-mashed or pulverised cannellini beans. Obviously the choice you make depends on whether you are trying to thicken a savoury or sweet food or beverage, and if that food or drink is being served hot or cold.

•   Some people have said to me that making foods or drinks sour, for example by adding lemon juice, helps to trigger the swallowing reflex.

•   Don’t eat too close to bedtime - Ideally allow 2+ hours after eating before going to bed.

For more information on nutrition and hydration, see my blogs ‘Hydrated and Happy’, ‘Food for thought’ and ‘The digestive balance’.

Until next time...

You can follow me on Twitter: @bethyb1886
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Fixing dementia care in hospitals

Standards of hospital care for people with dementia made the news last week, with an investigation by the Alzheimer's Society showing shocking variations in the quality of care being given, prompting the charity to launch their 'Fix Dementia Care' campaign.

Given that this time four years ago my father was still alive, and had been the recipient of some extremely variable hospital care in the years prior to 2012, it is a source of huge concern and sadness for me that many of the problems we experienced continue today.

The Freedom of Information requests that provided the substance for the Alzheimer's Society investigation highlighted that people with dementia were:

•    Falling while in hospital

•    Being discharged at night

•    Being marooned in hospital despite their medical treatment having finished 

Whilst my dad thankfully never had a fall whilst in hospital, being discharged at night was something he experienced on almost every inpatient stay. The reason given in his latter years with dementia when he was completely immobile was that he needed transportation via ambulance, and this was most easily accomplished at night when paramedics were less busy. Never mind what dad might have wanted of course.

 

I suspect the fact that he was being discharged to a nursing home, with staffing 24 hours a day, was also a somewhat convenient excuse. It was, however, a horrible experience for dad - these events often came in winter, and being moved out into the cold night air when he should have been tucked up in a warm bed was, in my view, a particularly sadistic form of 'care' that would leave him upset, disorientated and confused.

 

Being marooned in hospital was also a harsh reality for dad - at one point he spent three months in hospital (despite being medically fit for discharge) whilst funding was arranged for the care home placement that his doctors said he needed. During this time dad lost half of his body weight and the NHS picked up a huge bill for his care - a no-win situation for all concerned.

 

Alongside collecting data from Freedom of Information requests, the investigation by the Alzheimer's Society surveyed people affected by dementia. They found that 92% of those individuals felt that hospital environments were frightening and only 2% felt that all hospital staff understood their needs. 

 

Reading this led me to reflect on how my dad might have responded to his hospital experiences. I'm certain he found the hospital environment pretty unpleasant, from the noise, smells and routines of hospital life, to difficulties in finding facilities like the toilet and having opportunities for stimulation, occupation or activity during the long days as an inpatient. Only on one particularly 'fortunate' stay in hospital could I honestly say that dad had a better experience - he had his own room and staff found him a CD player. We brought in CD's for dad and his mood changed completely. Simple stuff, but so effective.

 

Sadly, however, meeting staff who understood dad's needs wasn't the norm. During the latter years of dad's dementia when he had dysphagia (swallowing problems), hospital staff refused to allow him to have food or to help him eat it, mistaking his hunger cries for pain and writing him up for morphine. This was a 'mistake' that could be interpreted as covertly putting him onto an end-of-life pathway by administering a drug that he didn't need and could have shortened his life with an inappropriate dosage.

 

Furthermore, this 'mistake' was only rectified because dad had a family visiting him for eight hours a day, speaking up for him, and bringing him food and drinks and helping him to consume them. We would also assist him with his personal care - without that help a man who liked to be clean shaven would have begun to grow a beard. But what happens to people without this family support? Do they get inappropriately medicated, starved, dehydrated or left dirty, uncomfortable and neglected? The variations exposed in the quality of hospital care suggests that this is likely to be a reality for some people with dementia who are inpatients today.

 

Despite the many difficulties we encountered with hospital care, however, I don't want to paint a completely bleak picture. There were good experiences, staff who genuinely cared and understood what dad needed, as well as providing great support for us. This was particularly evident in dad's last stay in hospital when he'd been rushed in with an aspiration pneumonia. 

 

His care was excellent, with the doctors treating him taking a lot of time and trouble during their interactions with dad and in their care for him, alongside explaining things to us and giving us time. Our decision to seek end of life care for dad from a care home wasn't because we were unhappy with his hospital care, but rather that the hospital couldn't offer the homely environment or privacy we felt he needed as his life approached its final stages. 

 

So, how do we ensure that hospital care is a high quality experience for every person with dementia? In my view providing comprehensive dementia education for all hospital staff (which Health Education England are tasked with delivering) and making environments more dementia friendly will only go so far.

 

The root of much of what is wrong stems from compartmentalisation. Hospitals work best when a person is admitted with one condition and treated for that condition. However, people with dementia often live with other conditions alongside their dementia, and are usually always admitted into general hospitals not because of their dementia but because of infections (mostly notably chest and urine infections), another long-term condition (like diabetes, heart disease or asthma) that hasn't been well managed, or because they've had a fall in their own home or in a care home.

 

This was never more evident for us than when dad needed hospital care during the last four years of his life when he had dysphagia. Treating a gentleman with dysphagia who also had dementia and all the challenges that brings around communication was an alien concept for most hospital staff, with approaches varying from the starvation I mentioned above, to trying to force a tube through his nose into his tummy rather than orally proving food (a tube he promptly pulled out), and providing ice cream (that quickly melted) as a suitable 'thickened' food for him (which in reality was as liquid as the water out of the tap).

 

What is needed to combat these issues is more holistic, joined up care that sees each person as a whole human being and treats them as such regardless of how many problems they have with their health and which of these problems has led them to be hospitalised. This approach needs to be combined with a comprehensive 24/7 service that enables individuals to access the care and support that they need when they need it. People can become unwell on any day and at any time - prompt treatment and, crucially, the availability of care and support when they are ready to leave hospital, is vital. 

 

Furthermore, if hospitals that are underperforming (as highlighted by the Alzheimer's Society Freedom of Information Requests) learnt from the hospitals who are providing some of the excellent care that the Alzheimer's Society found, these huge variations in care would become a thing of the past. It heartens me that some outstanding care does exist, but I remain saddened that so little seems to have improved since my dad was living with dementia. Clearly we still have a lot to learn.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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The digestive balance

You know that feeling you get after a meal when you've eaten a bit too much and although you loved the meal you are wishing you had shown a bit more restraint? Commonly known as indigestion, something I suspect all of us have experienced at some point in our lives, it's usually easily remedied and life resumes without giving much thought to our previously grumbly tummy.

Our digestion is one of the most complex and remarkable systems in our body. It has always amazed me that it can take what we give it, process it, extract what our body needs and eliminate what it doesn't. When it works well it is what you might call a perfect ecosystem.

When it doesn't work so well, however, it has the potential to seriously affect our quality of life. Sadly for a person with dementia, and particularly as their dementia advances, this can create a myriad of problems that at best will affect their sense of wellbeing and at worst can be a direct threat to life itself.

Long before my father developed dementia he had a turbulent relationship with his stomach. However, living with dementia brought with it a huge array of problems for my dad's digestive system. At its worst he was vomiting 'chocolate brown' - the terminology used to describe vomiting blood from a bleed in the tummy. The cause of the bleed was most likely the aspirin dad had been taking for years, prescribed to thin his blood to try and avoid more of the clots that had manifested themselves as the mini strokes that had led to his vascular dementia.

At its mildest, dad's digestive problems were potentially 'just' indigestion. Without the ability to communicate, however, care staff often missed the subtle signs of discomfort - rubbing the belly, facial expressions suggesting pain, dad shifting in his seat repeatedly and occasionally belching. Changes in bowel movements weren't so easily ignored, but they could be misunderstood.

If a person with a history of runny stools is producing runny stools that isn't unusual for them, providing it isn't with a frequency, appearance or accompanied by other symptoms that suggest a more serious problem. If they become constipated, however, that is unusual. Never is it likely to be more important that you understand the person's history and habits, and observe them closely, than it is with that delicate digestive ecosystem.

During my father's time in care homes he was medicated with laxatives one minute and then given bulking agents the next. Along with an array of other regular medications (most of which were entirely unnecessary) plus frequent courses of antibiotics (all of which listed stomach problems as a side-effect) I am quite sure his digestion didn't have a clue what the hell was happening to it.

Other issues for dad's digestion came when he went through a period of being unable to regulate how much food he needed, which had the potential to lead to severe overeating, discomfort and vomiting unless it was carefully regulated. For the last four years of his life he had a swallowing problem (dysphagia, which I wrote about here), which meant a diet of pureed food, unpalatable thickeners, repeated chest infections and a decline in his gag reflect, which meant he would vomit regularly. He also became increasingly at risk of dehydration.

Then, of course, there were the dreaded outbreaks of diarrhoea and vomiting bugs in his care home, which always laid everyone low. To dad's great credit and fortitude, he did well to maintain a fairly healthy weight. Obviously as his dementia advanced and his physical health problems increased his weight did gradually decline, but we tried anything and everything to help him keep as much strength as possible.

The odds were largely stacked against us. Alongside infections and the side-effects of medications came other problems. When dad stopped walking, his digestion suffered greatly. Imagine having that indigestion I describe in the first paragraph and being unable to get up and move around to try and assist the digestive process? Digestive problems are another key reason why supporting people to maintain their mobility for as long as possible is vitally important.

Consider also how what someone consumes affects their digestion. In a care home environment, you can't always eat your preferred food at every mealtime. You may be given supplements to make up for a lack of nutrients in mass-produced food, be subjected to additives including artificial sweeteners, and don't even get me started on the 'quality' of hospital food.

You may also be given foods that aren't friendly to your digestive system. People can develop food intolerances at any stage of life, and with a push towards high-calorie dairy products to help maintain weight, so comes the possibility of a reaction to lactose. Certainly in my dad's case dairy products became a major problem for him in terms of phlegm production, and how this interacted with his dysphagia, all resulting in more vomiting.

Equally, consider how much gluten is included in most menus. Coeliac disease can have serious consequences for a person's digestive system, leaving them malnourished and at increased risk of stomach and bowel diseases, even cancers, and will affect their absorption of nutrients, including calcium, making osteoporosis more likely. You only then need a person to have a fall and break a bone and the outcome can be premature death.

Diet and the consequences of it are also very serious for people who have diabetes - a common long-term condition that many people live with alongside dementia. For those individuals, the need to carefully regulate their diet is vital to prevent a potentially fatal outcome. Dental health, or lack of it, can also contribute to digestive problems if teeth are rotting and poisoning a person’s body.

Even conditions like irritable bowel syndrome, that are very common and yet poorly understood, require careful management to avoid 'problem' foods and the possibility of severe pain and changes in bowel movements. Indeed, the power of the digestive system is such that individual 'trigger' foods can be responsible for a whole host of problems, and not necessarily directly related to digestion either - take for example migraine.

If you were caring for a person with dementia who had limited communication, who had no history of migraines that you knew of and yet began experiencing regular severe headaches, nausea and changes in vision, would you consider their diet and digestion? Probably not, but keeping a food diary might prove very enlightening if you need to eliminate food as a possible source of their symptoms.

Part of the problem with digestion is that we just take it for granted. We feel hungry, we eat, we go to the loo - at its best it is a cycle of pleasure and relief that if it isn't giving us any problems we tend to just ignore. Self-help is often the route to solving any digestive issues, but as a person's dementia progresses that can become increasingly impossible for them.

Understanding the delicate nature of the digestive balance, the problems that can arise, and the effect they can have on a person's wellbeing and quality of life - and at their most severe the person's will to live - is vital to providing good quality dementia care. Alongside this it is also important to keep in mind the effect of not just how the person feels inside their body, but how they will feel if they have faecal incontinence and are left sat in their own faeces, or indeed have vomited and have been left with dried vomit on their body or clothes.

So next time you feel sick, have diarrhoea, are constipated, have acid reflux or just have symptoms that can only be described as a sore tummy, imagine feeling like that and being unable to help yourself or clearly express your symptoms. Not a pleasant thought is it?

Until next time...

You can follow me on Twitter: @bethyb1886

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Hydrated and happy

Dehydration is one of the biggest challenges facing anyone caring for someone who is older or living with dementia. Many older people are known to be chronically short of fluid in their bodies, leading to urinary tract infections and many other illnesses which can result in life-threatening situations that require urgent hospital treatment and intravenous fluids.

Good levels of hydration are vital to remain healthy and alert. Without them we can get confused and unresponsive, two symptoms of dementia, and also two reasons why it may be assumed that someone has dementia even when all they need is to increase their fluid intake. Understandably, in someone who is already known to have dementia, dehydration can make their dementia much worse. So how can you ensure that the person you are caring for remains hydrated and happy?

First of all consider the sort of drinks being offered. Have you tasted them personally? Are they pleasant? It may seem obvious, but it’s easy to ignore the fact that if what we are offering someone doesn’t taste nice it is unlikely to be welcomed. When a person has dementia they may not be able to articulate their dislike for something, so they will just leave it or spit it out, causing immense frustration for them and their carer(s).

Many care providers are hooked on giving their residents squash – water flavoured with concentrated and often additive-packed so-called ‘fruit’. This is about as far from real fruit juice as you can get – it is synthetic, can be metallic tasting and is full of preservatives that should be avoided. I certainly wouldn’t want to drink it and we banned squash from being given to my dad (as I wrote about here), favouring real fruit smoothies that were a perfect consistency and a delicious taste.

It is also important to consider how someone has always liked their drinks served. Are their long-standing personal preferences for milk, sugar or other additions being met in their hot drinks? Are they the right strength, and if they have always liked a particular brand, is that what you are making for them? Are their cold drinks the right flavour and style of drink?

Also think about the temperature of every beverage you serve and be mindful of seasonal preferences – not everyone wants a hot drink on a warm summer’s day.  If the person is able to drink independently, make sure the cup, mug or glass is something that they can pick up easily – assess the weight, style of handle and possibility of spillage. Finally, is the receptacle reflective of their personal choice? I once knew a lady who had spent the previous 70+ years of her life drinking her tea only from a cup and saucer. When carers started giving her drinks in beakers or mugs she simply refused to pick them up.

If you’ve covered all of these permutations and drinks are still not being welcomed, it is worth considering if someone’s preferences have changed. If they are unable to articulate how they feel, you may never know if they are looking for something different. Try alternative tastes and styles of drinks, including things that they may never have had before or that feature stronger flavours (taste buds can begin to fail as we get older).

Also think about how food can contribute to hydration. For example fruit and vegetables often have a high water content, while items like dry potato, al dente pasta or rice could sap fluid levels. Compensate for this by creating sauced based meals and ensuring that what you are serving is sufficiently moist (ie creamy mash rather than dry, lumpy mash and pasta that is served with a moist sauce).

Try things like ice creams and yogurt (being mindful of the phlegm-producing effect of dairy products that I wrote about here), sorbets, jelly or ice lollies. All of these have a high fluid element and can be the sort of ‘treats’ that might tempt someone when a drink in a glass or mug won’t. Cold products can also have a numbing effect on the mouth and throat, which helps some people who are scared of the feeling of food or drinks in their mouth.

Other contributing factors to dehydration can be the development or progression of a swallowing problem (that I wrote about here), dental problems, and symptoms of advanced dementia like being unable to recognise the link between the drink in front of you and the need to pick it up and swallow the contents. There may be muscle weakness, pain in joints or even bruising that could make it uncomfortable for someone to pick up a drink, particularly a heavy one. There may also be fear attached to drinking – for example being worried something may be too hot or cold, or that it could be spilt. Drinks may also need thickening if someone has a swallowing problem, but this can have mixed success depending on the beverage and can (despite what manufacturers say) change the taste of the drink.

When someone has advanced dementia, and especially if they develop a swallowing problem, the only solution to keeping them hydrated could be spooning or syringing drinks. In my father’s case, spooning was very successful. Thickened drinks, slowly spooned, allowing him time to swallow between each spoonful worked very well for a long period. Some people prefer syringing, but this must be done slowly since a sudden injection of fluid into the mouth can be startling, unpleasant and potentially lead to aspiration.

Ultimately, the key to keeping someone hydrated can often be trial and error, creativity and perseverance. Your role in helping them to prevent dehydration is one of the most valuable and rewarding things you can do, and most importantly of all it is lifesaving.

Until next time...

You can follow me on Twitter: @bethyb1886

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Catching some z’s

There are few things more closely associated with wellbeing than a good night’s sleep. It is something many of us take for granted until it is disturbed by the people or environment around us, or when those dreaded nights of insomnia strike and you lie in bed wishing more than anything that you were asleep.

Although some people can function well on very few hours of shut eye, most of us struggle through the day when we have not had the sleep we need. Sleep deprivation as a result of being a parent is well documented, and yet very little is said about the many carers who never get a good night’s sleep because they are looking after a loved one. For those who are caring for a relative with dementia, sleepless nights can become a feature of everyday life that lasts for many years, draining both the carer and the person with dementia physically and mentally.

From the night terrors, sweats and hallucinations that can often accompany the earlier stages of dementia, to the way in which the disease can eventually remove that vital understanding about daytime and night-time, dementia poses many challenges around sleeping for the person with it and those who are caring for them. As dementia progresses the person living with it may sleep more and more, and in the end-of-life stage constant sleeping is not unusual.

A classic sleeping pattern for people with dementia is napping in the daytime and then being wide awake in the evening. This was certainly true of my dad. Throughout much of his dementia his daily routine involved both a mid-morning nap (before lunchtime) and an extended afternoon nap between lunch and teatime. Come the evening, however, he was invariably wide awake and would remain so for many hours.

People with dementia will often nap for the same reasons that anyone else might, so it could be as a result of being very relaxed, becoming bored, or because the room they are in is very warm or sunny. It could be a side-effect of medication, or an indication that earlier activities have tired them out. Personally I always found it very calming to see my father having a peaceful forty winks. The only time I ever worried was when he developed a sudden pattern of excessive sleeping, which in his case was always a sign of an infection brewing.

Dad’s napping never really affected his ability to sleep at night, although over the years some of his GP’s still offered prescriptions for sleeping tablets like the pills were sweeties to be doled out to all residents. Dad had never been a person who went to bed particularly early (despite being a farmer who needed to be up at the crack of dawn) so we requested that the care home staff never put him to bed before 10pm. If he went to bed too early he would be very restless, moving himself around, making loud noises and appearing very distressed. He could easily sleep in his comfy chair earlier in the evening if he needed to, but mostly he would be bright eyed and listening to his music.

From a digestive point of view, it is also very important to monitor bedtimes in relation to eating times. Often as people get older their digestion slows down, and going to bed too early can cause indigestion, leading to pain and discomfort that the person with dementia may not be able to articulate. If that person also has a swallowing problem (dysphagia, which I wrote about here), it becomes even more important to be mindful of their bedtimes. With dysphagia it is vital that the person is kept upright whilst taking anything orally to prevent choking (in our experience a profiling bed was never as effective as a chair and cushions for support). In my dad’s case this advice also extended to a prolonged period after any food or drinks (usually at least 2 hours) to help prevent vomiting, and reduce the chances of aspirating any vomit (which could lead to pneumonia).

There is often a temptation in care homes to put people with dementia to bed early just because it may be more convenient for the running of the home. If a person has been used to going to bed early, or worked shifts, then of course their established sleeping pattern should be respected, but if someone has always gone to bed later, making them revert to early bedtimes, the like of which they may not have experienced since they were a child, is totally unacceptable unless the person themselves wants to change their routine.

The exception of course is when illness strikes, which will naturally change sleeping patterns immensely. During those times bed is often the best place to rest and recuperate, although in my father’s case he had to feel extremely poorly before he would sleep peacefully in his bed without becoming agitated. Sleeping upright in his chair is something that dad had done prior to his dementia when he was chesty, and he retained that ability to sleep restfully in his chair during the numerous chest infections that he had when he was living with dementia.

In dementia’s shifting landscape, sleeping patterns may well come in phases, and they often require huge patience in order to cope with them. Helping someone with dementia to sleep, particularly at night, is about understanding their preferred times and places to sleep, the things that help them get to sleep or the triggers that keep them awake. Do that, and when they are finally catching those z’s, my best advice would be to catch some yourself.

Until next time...

You can follow me on Twitter: @bethyb1886

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Hard to swallow

(A note before I begin this blog: You should not consider anything written in this blog as medical advice for you or anyone you care for).

Something that is sadly very common in advanced dementia is the decline of the swallowing reflex. The condition, known as dysphagia, is extremely distressing for both the person affected and those caring for them, and can be fatal, either directly through choking or indirectly by setting up aspiration pneumonia.

The uncontrollable coughing that often accompanies a swallowing problem, indicating that something taken orally has gone into the trachea (windpipe) instead of the oesophagus, can leave the person affected gasping for breath, red-faced and sweating. For anyone who has witnessed someone choking, it is a terrifying moment.

My father suffered from dysphagia for the last four years of his life (something that I first touched on here). In his case it was a condition that gradually worsened over time, and for which there was no cure. As his life was nearing its end, he became incapable of swallowing anything; a combination of his swallowing mechanism totally failing and the fact that he was very ill with pneumonia, leaving his body completely unresponsive to any demands on it. Tube feeding was something we had investigated with hospital doctors in the past, but in someone with dementia it often causes huge distress and is very unwelcome (my father actually pulled a tube out), so it was not something we ever considered again, and certainly not when looking for a peaceful, dignified and pain-free end to his life when it became clear that he had simply given up and was ready to go (I wrote about my father’s end-of-life care here).

Careful management of dysphagia is vital to minimise incidents of choking. In my father’s case, this guidance specified that he must be seated completely upright at all times when being given anything orally. Although he had a modern profiling bed in his care homes and on the occasions that he was admitted to hospital, this still did not offer the level of upright posture that he needed, partly due to the bed’s limitations but also due to the fact that dad had a habit of shuffling himself down the mattress! Therefore in my father’s case, the only safe way to give him anything orally was for him to be seated in his chair (not your average care home chair, but one purchased by us) supported by numerous cushions.

The other key factor in dysphagia management is the consistency of all the foods, drinks and liquid medications given to the person with the condition. Powder thickeners are often prescribed to help with this, but it must be remembered that having things too thick is as dangerous as too thin. Too thick and our experience was that it would stick in dad’s mouth/throat, causing coughing. Too thin and of course it easily goes into the windpipe. Even though advice is given on the amount of thickener to use, you still need to apply your judgement on the end result for each individual food/drink or medication. To begin with this often feels like a process of trial and error, but perseverance brings knowledge.

We found that hot drinks tended to go very thin again if they were thickened when hot but it then took a lengthy period for them to be given, and re-thickening was not successful. Cold fruit smoothies thickened particularly well and held their consistency over a long period. They are also a great choice for anyone who enjoys fruit as they are so nutritious.

Where food is concerned, in dad’s case this ended up needing to be a soft/pureed diet. Again consistency is vital. We found hospital ‘puree’ food is like glue; far too thick and therefore dangerous. Care homes vary in their interpretation. ‘Liquidised’ food is often too thin and extremely unappetising. Normal meals that are gently pureed are preferable. Even with a pureed diet, however, you can be imaginative and mash many foods if they are cooked correctly, or in the case of bananas, ripe enough. What you must avoid is lumpy food, or food that has lumps amongst runny parts (i.e. lumpy mash in runny gravy, or a dense pudding with runny cream or custard). Ice cream or sorbet is often thought to be perfect for people with dysphagia, but not if it is allowed to melt and not thickened! Homemade soups are excellent and again very nutritious, but consistency is vital.

Developing a good understanding of these issues, combined with care that is personalised and dedicated to the individual, can help to minimise incidents of choking, but even with the best care you will never avoid them completely due to the nature of a failing swallowing mechanism. If your loved one is in a care home, you are relying very heavily on staff being vigilant with adhering to the guidance, but also being confident enough to support them to eat and drink and not just avoiding this for fear of ‘getting it wrong’.

People with dysphagia can become dehydrated or malnourished very easily if carers are too fearful to attempt or persevere with supporting them to eat and drink, or if such support is rushed because staff are over-stretched. Someone with dysphagia needs slow and careful support to eat and drink, ensuring that their mouth is empty after each spoonful of food or drink, but it is important to stress that if the person is in otherwise good health, they can live with this condition for a long time. My father ate and drank well and maintained a generally very stable weight during his four years with dysphagia, even increasing his weight in the times when he was not on antibiotics.

Of course it is not just swallowing food and drinks that can cause problems; people can choke on phlegm or saliva when they have dysphagia. Minimising phlegm is especially important, and given that dairy products are known to aggravate phlegm in some people, we restricted dad’s dairy intake, replacing cow’s milk and cream with an oat alternative.

There is a huge drive in dementia care for a high calorie intake, and to this end many people living with dementia are advised to eat full-fat dairy products as often as possible. However, in my father’s case, not only did these products increase his phlegm production, creating more coughing and choking incidents, but the richness of creamy porridge early in the morning and full-cream milky drinks at night produced a pattern of vomiting. Aspirating vomit is the most dangerous possibility for someone with dysphagia because vomit is such an acidic substance, and it was through aspirating vomit (having been fed something he should not have been whilst in bed) that my father ended up in hospital with a catastrophic aspiration pneumonia that was to end his life.

If you are concerned that your loved one living with dementia is developing a difficulty in swallowing, either showing a reluctance to swallow foods/drinks that they previously enjoyed, regularly coughing when they do try to swallow something, or suffering from repeated chest infections, it is vital to seek medical advice as soon as possible. Your doctor can refer your loved one to a SALT (Speech and Language) therapist; they are experts in assessing and offering advice on dysphagia. Despite my father’s advanced dementia, the Speech and Language therapist was successful in assessing him when his swallowing problems were first identified (when he was admitted to hospital with a chest infection caused by aspiration), and gave us excellent advice that helped to give dad quality of life and give us confidence in caring for him.

Until next time...

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