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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