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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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...

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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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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...

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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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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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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...

You can follow me on Twitter: @bethyb1886

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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...

You can follow me on Twitter: @bethyb1886

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