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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Do something new... with mealtimes

Welcome to the first of my seven blog posts for UK Dementia Awareness Week 2015.

This year's Dementia Awareness Week centres around the theme of doing something new for people with dementia, under the mantra that ‘Life doesn’t have to end when dementia begins’. For many people living with dementia in care homes, however, a lack of opportunities to have meaningful occupation and activity, or even just enjoy the simple pleasures that many of us take for granted, can lead to life feeling like it really has ended.

Over this Dementia Awareness Week (DAW2015) I want to look at some of the positive things relatives and staff can do to enhance the lived experience of people with dementia in care homes. They may be new things, or they may be old favourites, but they all share in the ability to turn a boring day into something a little bit more special.

 

Day 1: Food and drink

We all have to eat, and yet in care homes mealtimes, and indeed tea and coffee breaks, often become very transactional. The people who live in the care home are seated, the food arrives, the food is served, people eat, or are helped to eat, and two courses later everything is cleared away. It’s not always the most appetising process as stale smells linger in the air, nor does it promote eating as a really positive experience, but it is possible to turn that transactional approach on its head.

Some care homes actively encourage their care staff to eat with their residents. This promotes inclusivity, enables a supportive watch and learn approach for people with dementia who are perhaps struggling to remember how to use cutlery or eat a meal, and is an added perk for hard-working and dedicated care staff. Equally, why not encourage relatives to join in mealtimes – some of our happiest times with my dad were spend sharing a meal together at his care home. Think also about anything residents could do to participate in the mealtime experience - helping to lay the table, serve food or clear away. Some people may enjoy helping and feel it gives them an added purpose in life.

Mealtimes and break times don’t always have to be in the dining room either. For some individuals with dementia routine is vital and you wouldn’t want to upset that, but for other people a picnic in the garden, or an afternoon cream tea on the terrace makes a really refreshing change that stimulates appetites and makes eating an enjoyable social event. All it takes is a bit of creativity and planning on the part of the staff team, and some enthusiasm/participation from relatives always helps too.

Finally, think about your menus. For some people tried-and-tested favourite meals are really important, but another individual whose appetite is flagging and weight is dropping away may need their diet to be invigorated with new tastes (and possibly stronger tastes if their taste buds aren't responding too well), different styles, presentations or consistency (thinking here particularly about pureed food for people with a swallowing problem). Time of day is also important. Not everyone wants to eat when the routines of the care home dictate they should eat, so be mindful of individual preferences and ensure they are catered for.

More information, tips and advice on food and drink, eating and dining techniques can be found in the following D4Dementia blog posts:

Food for thought: http://d4dementia.blogspot.co.uk/2012/05/food-for-thought.html

The digestive balance: http://d4dementia.blogspot.co.uk/2014/03/the-digestive-balance.html

Hydrated and happy: http://d4dementia.blogspot.co.uk/2013/05/hydrated-and-happy.html

Hard to swallow: http://d4dementia.blogspot.co.uk/2012/09/hard-to-swallow.html

Next post on 18 May 2015.
Until then...

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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...

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Five-a-day to keep dementia away?

Fish pie - Brain food?

One of the things I am most frequently asked is how do you prevent getting dementia? People who have seen how this disease eventually ravages a person would do anything to avoid getting it, and those who have no first-hand experience, but then hear about my father’s physical and mental decline, are generally keen to avoid developing dementia.

Sadly there is no magic solution to prevent getting this disease. The healthiest and most physically and mentally active can still develop some form of dementia during their lives. My father is a prime example of this: he was a very active, hard-working man with a healthy outdoor lifestyle, who very rarely smoked his pipe and only occasionally enjoyed alcohol. Prior to developing dementia he was not over-weight, and had a healthy diet with lots of fruit and vegetables.

The tipping point, in my father’s case, was retirement. His previously busy life as a farmer suddenly stopped; the adjustment coincided with him losing interest in some of his hobbies and his life became more sedentary. The huge mental upheaval of no longer being a working man took its toll, and where his life had previously been about the dawn-till-dusk responsibilities and expectations of tending his animals, he was suddenly as free as a bird. Sadly, however, he never found his wings within this new existence.

Very gradually the type of vascular dementia known as multi-infarct dementia (which is caused by a series of small strokes), set in. These strokes were so tiny that for a long time dad never reported any change in how he felt, even though the strokes had begun to wreak havoc in his brain, and by the time symptoms of what we now know was dad’s dementia were very obvious, damage had occurred, and would continue to for many years before he finally had a diagnosis.

Other relatives in dad’s care home also reported that their loved ones had led healthy and active lives prior to developing dementia, so is there any answer to the question of how to avoid the big D?

Given my interest and research into this subject over many years, and the expert advice, studies and tips I see on a daily basis as part of my job, I would love to report that there is a fail-safe way to avoid developing dementia. To date this has not been found though, and however well people can live with this disease, and I truly believe they can with personalised, therapeutic care in community settings that value, support and embrace them as a person, there will obviously never be a substitute for prevention.

I am not medically trained, but I absorb all the information available and one of the most powerful messages is the one reminding us that what is good for the heart is also good for the brain. I am a great believer in fresh, wholesome food, rich in fruit and vegetables, low in dairy and with meat and fish in moderation. In short, the key to our food and drink intake seems to be about maintaining a good 20% acid/80% alkaline balance.

I avoid processed, ready prepared, or take away meals, always cook from raw ingredients (including staple items like bread), and never touch anything with additives in it. I would rather have a teaspoon of raw cane sugar than anything with so much as a particle of artificial sweetener in it. In fact, in all three of my father’s care homes, where they offered residents squash (laden with artificial sweeteners) throughout the day, we banned them from feeding this to my father and brought him in pure fruit smoothies instead. We firmly believe that the nutrition within those drinks (especially considering that he could eat very few fruits raw due to his swallowing problems), helped his body to recover from the dozens of chest and bladder infections that he endured during the last few years of his life, proving what I wrote about here, that good nutrition is vital to not only preventing dementia but helping those already living with it to have a better quality of life.

I exercise as much as I can (I could always do better), am a big believer in natural (non-chemical) skincare, get as much rest and relaxation as my schedule will allow, and try to keep a healthy work/life balance. If giving the brain a good workout is as beneficial as we are lead to believe, then mine certainly gets a daily dose of that due to my job, and I have no desire to retire, which in the case of my generation is probably just as well! I have never smoked, rarely drink, never touch Coca Cola or the like, and confess to being addicted to water. Wherever possible I also source alternatives to pharmaceutical preparations, something I think most pharmaceutical companies would prefer isn’t encouraged. The only thing I do struggle to influence is the pollution in the atmosphere, which I would be the first to admit is very bad for you.

When my father was initially diagnosed with dementia, we sought the advice of one of the leading old-age psychiatrists treating him to find out her view on what could be done to prevent dementia. She recommended a ginkgo biloba supplement, while other advice I have read more recently suggests supplementing with B vitamins can help to keep the brain healthy. There are literally hundreds of studies out there suggesting positive associations between good brain health and different supplements or foods. What to believe is always the main problem, but my feeling on all things is generally that moderation is the key.

Granted we all have our own choices to make, our own lives to lead and face the consequences of our actions as a result. Whether mine or my family’s choices will make it any less likely that we will develop dementia only time will tell, but I firmly believe that anything that keeps you healthier generally is at least a step in the right direction.

Until next time...

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Food for thought

One of the things many of us take for granted in our busy lives is the enjoyment of food. It is vital to fuel our bodies for the physical and mental exertions they face, and it is one of life’s great pleasures, but what happens if you forget about the importance of food?

Many people living with dementia develop problems with eating which are hugely distressing both for the person concerned and their carers and loved ones. Those living with dementia can lose the sensation of hunger or thirst, or conversely, overeat because they cannot distinguish when they are full. They can clamp their mouth shut, making feeding very difficult, or spit out some or all of what they are given.

As dementia progresses, those living with it can increasingly lose their ability to smell and taste, and some people then only respond well to strong flavours and aromas (and I don’t mean overcooked sprouts!). Likes and dislikes can also change frequently, and those caring for someone with dementia need to be both innovative and flexible with food, and the choices they can offer someone developing problems at mealtimes.

The colour and size of plates, style of cutlery, patterns on table cloths, and distractions in the room can all affect a person’s desire to eat. For some people portion size is the key problem, with piled up plates appearing to be an insurmountable task, whilst for others it is simply about deciphering what they would like to eat when they cannot necessarily accurately tell you.

The single most important point, however, is that like with every other aspect of dementia, every person living with it is different. What works for one person won’t work for someone else, and what works on one day can spectacularly fail the next. What I can pretty much guarantee, however, is that the higher the quality of the ingredients and the more skill with which they are prepared and presented, the greater the chance that someone living with dementia will be persuaded to eat the meals so vital to their quality of their life. It all boils down to valuing the person living with dementia and giving them something that a person without cognitive impairment would be happy to eat.

We were lucky with my dad, in the 19 years he battled dementia he generally had the appetite a horse would be proud of, only going off his food when he was suffering from an infection. He never forgot how to eat, even if he lost the ability to co-ordinate cutlery (resulting on one occasion in him using his fingers to feed himself ice cream), and mealtimes were generally happy occasions. As his dementia progressed he eventually could no longer feed himself and he relied on his carers and his family at every mealtime, and soon after that he could no longer drink for himself either, and so had to be assisted with that too, but he was a willing recipient and a joy to care for.

It is crucial for someone with dementia that they are given time when eating. Sadly care staff are often under huge pressure to get everyone fed as quickly as possible, rushing those who would otherwise eat more if given longer. Likewise the pressure on staff can result in not enough drinks being given, simply because again they do not have the time to sit with each resident while they either drink themselves or are assisted. The way in which some people are fed is also very alarming, and of course in hospitals, many people are not fed at all!

My father was a man who adored food; not in an unhealthy, developing obesity sense, he just loved good, honest, home-cooked food, and as a farmer and keen gardener he knew the value of fresh produce and organic production methods. It was, therefore, a particularly cruel twist of fate when he developed dysphagia, otherwise known as a swallowing problem.

Over the last four years of his life this became worse and worse, until in the last few weeks there was a 50/50 chance of anything taken by mouth going into either his stomach or his lungs, the latter resulting in pneumonia. He battled valiantly to eat even the most e-number laden, gluey and utterly revolting hospital food, and when he finally moved into his new nursing home, still very poorly, he briefly showed renewed enthusiasm for life with food that was homemade, lightly pureed and both looked and smelt really appetising, a real revelation in how to produce food that is perfect for someone with dysphagia.

If dad’s last care home could produce meals of such high quality, then there is no reason why all homes cannot do the same, many already do. Likewise, hospitals should be forced to fundamentally overhaul the food that they are feeding to those in their care. I was reliably informed by other patients that the standard meals were pretty disgusting, and certainly the pureed food given to my father most people wouldn’t feed to a dog (and the dog would probably refuse it anyway!).

Nutrition is not given a high enough standing in our society of fast food, ready meals, and the chemical laden products being ingested by huge swathes of the population, contributing to the many health problems people now face. It is even fed to the most vulnerable people in hospital at the very time when they need to be getting better, not worse.

For all those living with dementia, and everyone who wants to prevent developing it, a healthy, balanced diet is vital, and it is something I will post about again in more detail at a later date.

 Until next time...

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