Wednesday 12 September 2012

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...

Beth x

You can follow me on Twitter: @bethyb1886


  1. Hi Beth, as a carer for patients with dementia this post is a very honest and frank description of how people can suffer in different ways. So many people think dementia is just a disease that makes people forget things when in fact it affects a whole lot more than memory. I'd be interested to know what thickener you were using? It sounds a lot like "thick n easy" which if I'm honest really isn't the best product out there at the moment, though a lot of doctors and SALT teams recommend it. Can I suggest to your other readers they try "Nestlé Thicken Up Clear" as it's a much easier product to use and stop thickening when the consistency is right. You can buy it in different strengths and can also be bought in individual sachets to avoid wasting the product. Cold food and drinks can also be stored for upto 2 days in the fridge once they have been thickened so less wastage there too. I want to thank you for telling your story and hope people spread the word about this sad illness that affects so many lives. Glen x

  2. Hi, just want to thank you for writing this. My mum has dementia and has been choking alot when eating and drinking and also on her phlegm. The problem with the phlegm is there is so much of it there coughing it up is a problem and so she swallows it down again and makes the choking worse.

    It is such a worry and really horrible for my mum, I have even called an ambulance because it got so bad. So far nobody seems to be able to help. But reading this has helped so much Thank you. Your dad was lucky to have you as a carer.x

  3. My father had Alzheimer's and during the later stages he had problems eating.Each time I fed him or give him something to drink, he would always cough. Come to find out he was aspirating, which led to a fever and infection. He later developed pneumonia because of it.

  4. Hi Beth

    My 83-year-old mother passed away just under two weeks ago at a nursing home. Mum had a chest infection for a few days since Monday - but it seemed to be relatively mild, and by Thursday, she was able to sit up in the dining area and have her tea there. Early on Friday morning - just as I got into work - I received a phone call to tell me that my mother had passed away. When I got to the nursing home the matron told me that she had probably choked on phlegm or vomit that had built up as a result of the infection. I was informed that they had checked on her at 5.00am and she was okay, but at 6.45am they checked again and found her 'gasping for air' (although I'm told that she wasn't conscious when this happened.) They called out the ambulance crew who performed CPR but they couldn't manage to revive her.

    As you will already know, this is a total shock to me. I am her only child and she was the only person I ever had in this world. My father died when I was 16-years-old, and I'm 44 now, but I never got married or had a close circle of friends. I feel like I have lost a mother, partner, child (Mum became very much like a sweet toddler in her last two years) and best friend all rolled into one.

    I also feel guilty and stupid that I did not do more for her. I was planning to give up work and have her home with me - although I don't know whether I would have been able to cope as since she fell over and broke her hip just over two years ago she never regained the ability to walk, was totally confused (subject to mood swings) and needed 24 hour care as she was in high danger of getting up during the night, falling again and injuring herself.

    1. So sorry to read your news, very sad. Sending my condolences to you at this awful time. If you want to chat further in private, you can email me:

      Always here if you need some support. All the best, Beth

    2. Sorry to hear your story. You did the best you could possibly do. My dad of 83 years-old has the exact same illness and symptoms at the moment. We have four healthy people at home taking turn to take care of my father. Even with this kind of support, we still feel extremely stressful after only one year of care-giving. It's not likely an average nursing home can provide proper cares to patients who suffer from dysphagia and dementia, let alone one single caretaker in your case. The nursing home simply doesn't have enough resources and nursing staff to watch patients 24-hours around the clock, which is a must for people suffering from this illness.

  5. Thank you, Beth.

    My dear Mum's funeral is tomorrow - went up to the funeral home to pay my respects this afternoon. This time is the worst time of my life - so far. This is completely new, unknown territory for me and at the moment it's frightening as I'm not sure how, or if, I'm going to get through this. Moreover, lots of unanswered questions going on in both my head and heart at the moment.

    1. You may not feel like it at the moment, but you will get through this. Draw strength from everything your mum meant to you, and remember that she would want to see you shine and be happy.

      Grief is a very raw and unpredictable emotion, so give yourself lots of time and be patient.

      Take care, Beth

  6. Hi Beth, My mum is in the late/severe stage of vascular dementia (fifth year) and she seems to be struggling after every drink and swallow she is coughing all the time and I can hear mucus or something on her chest. She is in a nursing home but I think they just take it in their stride?? She is also immobile, doubly incontinent, has to be fed, does not speak or smile, unsure if she knows me, not aware of her surroundings etc Is this coming to the end stages of the disease because I believe this area will not get any better with the swallowing. The reason I ask is because I find it hard to get the right answer from anybody as the nurses at the home say every day is different with vascular dementia - so I get mixed answers and never seem to know where I am with it all. Then my head seems to be full of mixed emotions eg: prepare myself for the worst or just shrug it off as a bad day. She is also on softened diet and she will take it from a spoon. Weight loss is over a stone since Jan this year and salt team came in recently and just told the home continue the same with thickened drinks and softened diet. Such a cruel disease to get my ahead around sometimes and I just need to link up with somebody who has been through this please. I hope you don't mind me writing but I read your blog with great interest and like you I want to help people in the future as there have been times when I feel there is not enough support for those with loved ones going through this cruel cruel illness. Some days I am strong and can deal with it other days its harder. Thank you for reading.

    1. Hello, thank you for sharing yours and your mum's experiences. A specialist dementia nursing home should be used to supporting people with swallowing problems (dysphagia), and it's good your mum has seen someone from the SALT team. Given your mum's weight loss, it might be a good idea to also ask for dietician advice - there are some food supplements that might help her to maintain weight.

      In my dad's case, his swallowing never improved after he was diagnosed with dysphagia, although some days he coped better than others - days when he was alert, not unwell with an infection etc were his better ones. That said, as you'll have read in the blog, my dad had dysphagia for 4 years before he died, so it certainly wasn't something he only had in the last few months of life. Everyone varies of course, and your mum and her condition are unique to her.

      Our experiences suggest a person can live well with dementia and dysphagia (along with other conditions like immobility, incontinence etc) if these conditions are well managed and all appropriate support is given. Dysphagia does put a person at increased risk of aspirating (food/fluid going into the chest instead of the tummy) which can lead to potentially life-threatening pneumonia, but with good support you can minimise the risk.

      I'm afraid there are no definitive answers regarding life-expectancy. I often prepared myself for the worst when dad was very poorly with a chest infection, or hospitalised with pneumonia, but many times he pulled round. As a family member it can be incredibly difficult to cope, so don't be too hard on yourself and just take each day as it comes. If possible, try to find ways to connect with your mum through something she has always liked (music worked well for my dad, stories, poetry, films etc may work for other people) to try and help your relationship and communication during these difficult times.

      All the best,

  7. Hi thanks so much for this post. My grandfather is in a hospital now and staff is pushing for a feeding tube, which our family is wholly against. I have researched that feeding tubes are not best for people with dementia, but the hospital is claiming my grandfather can't swallow at all and is refusing to offer anything by mouth.
    I have been preparing for the thought that my grandpa will be dying soon, and his dysphagia appeared so suddenly. I don't trust that the hospital is acting in his best interests, and I at least wanted to take him home so he can be comfortable and surrounded by family if he's in his last days. It's uplifting to hear that your dad lived so long with similar issues.

  8. Thank you for this. My grandfather is currently in the hospital and they are pushing to give him a feeding tube, which no one in the family wants. His dysphagia came on suddenly and I didn't know much about it aside from learning that feeding tubes do nothing to extend life, and have so many drawbacks I knew my grandpa wouldn't want one.
    The hospital claims my grandpa can't swallow at all, but they haven't tried to hand feed him. If these are indeed his last days, I wanted to bring him home to be safe among family. It's heartening to learn that your dad lived so many more years with similar symptoms.
    We are fighting the hospital to have my grandpa's wishes respected. Thanks for sharing your story and helping us to know we are doing what's best for our family.

    1. Hi Shelby, thank you for sharing your story. My personal view is that feeding tubes aren't a good idea for people with dementia. We persevered with giving my dad food/fluids by mouth until the end of his life, at which point he really didn't want and couldn't take anything. I'm glad my blog has been helpful for you, and I wish you and your family well. All the best, Beth

  9. My mum has dementia and won't lift her head holding food and drink just comes back out she has been referred to salt team we are waiting to see if thickeners areally given. But as she keeps her head forward and is dribbling constantly I am thinkingredients we are at the start of the end. Which I have mixed feelings about as obviously I am feeling great sorrow but if it is now this bad I am hoping it is the final stage. It is just so awful watching this long goodbye

    1. Hi, so sorry to read of your mum's experiences. I hope the SALT assessment helps to provide some guidance and information on how best to support your mum now. My dad would sometimes hold his head down - with dad it was a common position when he was poorly and hadn't the energy to hold his head up enough to then rest back. If it hasn't already been checked, make sure your mum isn't struggling with an underlying infection (eg: UTI or chest infection). Also if it's possible to change chair, or use more soft cushions for support, that may also help. Your mum's neck may be very sore from the position it's in, and some gentle massage on that may also help. Wishing you well, all the best, Beth