In this blog, Charlotte Squires, a trainee doctor in older adult care, reflects on issues with eating for people with severe dementia and options for supporting them, including new evidence on tube feeding. Sarah Chapman and friend Sue share experience from supporting their mums with dementia.
Blog last updated 6 December 2021
Charlotte: reflections from practice and the evidence on tube feeding
Let’s start by acknowledging that eating is important. We all know this – food not only sustains us, but provides pleasure, social and cultural opportunities, and can also be an act of love, whether you are preparing food for someone you care for or eating food that has been prepared for you. We automatically worry when people cannot eat, and untangling the emotions associated with a struggle to eat can be difficult all round. Food, and how someone eats it, or doesn’t, is one of the most emotive things I discuss as a trainee doctor specialising in older adult care.
There are a variety of medical reasons why someone might be less able to eat normally, and there are several different options to consider in these cases. Such as artificial feeding, mainly via tubes that go through the skin of their belly into the stomach (called a PEG) or down the nose (a nasogastric tube), modified texture diets, or making the decision to support someone to eat precisely what they like.
The pros and cons of each option might vary in different situations, but the Cochrane Review Enteral tube feeding for people with severe dementia has suggested that, actually, for people with advanced dementia, the evidence supporting perceived benefits of tube feeding is weak. How tube feeding might affect quality of life, pain, nutrition, mortality and survival remains uncertain. New information for me was that people having tube feeding are probably at higher risk of pressure ulcers, which can be painful, serious, and can also increase the care someone requires. Overall, it is becoming difficult to be certain of the benefits of tube feeding, and associated harms must also be considered.
Changes and challenges
When someone has advanced dementia, their flavour preferences may change, which may be difficult for family – how can it be that someone who has always preferred savoury foods suddenly wants something different? How might it feel if the cheer-up meal you have cooked for decades is pushed away? On the other hand, watching someone tuck in, knowing that some of it might be ‘go down the wrong way’ and cause a life-threatening aspiration pneumonia, is also difficult. There might be one person at the centre of these situations – the person who has dementia – but there are always others involved too, who may need advice and support, and who often bear the brunt of the worry. I am very aware that it is one thing for me to acknowledge the complexity of these situations with the patients and families I care for, and another thing to directly experience it.
What might help?
Practically, there are some potential ‘easy wins’ to consider when someone’s appetite has suddenly changed: have we thought about factors such as loose fitting or broken dentures, dental caries, mouth ulcers, and oral thrush? Have we addressed pain, acid reflux, nausea, and constipation, all of which can impact appetite? Have we looked at people’s medications and made sure we aren’t giving someone a meals-worth of tablets before they even start?
We should also harness the expertise of dieticians, speech and language therapists, and other professionals to provide pragmatic tips and tricks (such as those featured in this useful resource: Eating and drinking – information for family and friends as dementia progresses towards the end of life) to optimise what someone can eat in as relaxed a way as possible. This might include considering and managing the emotions that arise when a plate is not finished; none of us eat well in a stressful environment, after all.
Approaching the end of life
When these factors have been addressed, there can ultimately be a role for recognising that someone’s appetite is unlikely to dramatically improve, that their underlying dementia holds a key role in this, and that they are now approaching the end of their life.
How then can we best support people?
Some of this might be considering what someone’s wishes would be in terms of the options provided, and having conversations early on can be really helpful in planning for the future. Useful information can be found on these pages on Talking about death and dying and How do I make an Advance Decision (Living Will)?
As doctors having these conversations, we need to be able to assess and communicate the risks and benefits for each person. Like everyone, doctors may also differ in their opinions as to what is the best option, and having evidence to support emotive decisions is critical – it means when we say ‘I don’t think this person will live any longer, or have a better quality of life if we organise a PEG’, we can base this around the experience of many patients included in research studies, such as those incorporated into this review, and not just those we have directly cared for, or our personal views.
I am aware that as a family member, there can be a real impetus to ‘do something’ when someone is not eating, and it may feel that taking away the burden of stressful mealtimes and substituting this for a tube feeding regime, would be much easier. Our role as professionals is to ensure the information about options is as complete as it can be, and also to be balanced and fair in our assessments; more invasive options, increasingly, do not seem to be a silver bullet for people living with advanced dementia, though we still have a lot to learn about how we measure these outcomes.
I increasingly think that a critical element is openly acknowledging that watching someone eat less, lose weight, and become increasingly frail, is incredibly difficult, and does not constitute a failure of care or attention. People die of their advanced dementia, in spite of the care their families may give, not because of a lack of it, and we need this message to be clear.
Sarah and Sue: reflections from experience
Sarah: Mum was a foodie; an early adopter of Mediterranean cookery, a brilliant baker and a happy provider of delicious meals for family, friends and community events. But as Mum’s dementia advanced, her food preferences changed. Her long-standing enjoyment of savoury foods was replaced by a delight in sweet things. One time I arrived with some liquorice allsorts and Mum, forgetting the word for sweets, was so pleased with that ‘bag of naughties’! Her live-in carer was so great at making dainty, delicious meals that Mum could enjoy, adapted to her changing abilities and preferences. In time, Mum started to have some difficulty in swallowing, but it was fortunate that she was able to eat and drink until the last week of her life. News then that she was struggling to get a cup to her mouth was awful to hear; such a pitiful image of one so dear to me.
I was glad that, while Mum was still able, we had talked about what she would like, should she no longer be able to eat. Mum was clear – no hospital and no tubes. This was part of a discussion of what interventions Mum would wish to have or avoid, and under what circumstances. We used the guidance from Compassion in Dying (linked to above and below) to help Mum make an Advance Decision, supported by her GP. It was such a relief to have this in place and to know that, as Mum stopped eating, the focus should be on ensuring her comfort (which included mouth care – so important), not finding another way to provide nourishment.
I talked to my friend Sue, who has supported her mother with severe dementia, unable to communicate, move or do anything for herself for five years. Cared for at home by family members, with visiting carers, her meals are pureed and fed to her by hand. It is only very recently that there has been any assessment or support with her eating, which Sue initiated when her Mum starting coughing when eating and drinking. A speech and language therapist assessed her at her best time of day when her eating was at its best, and therefore felt that no intervention was required, even though later in the day things were often very different. A home visit from a dentist was eventually organised too, when Sue had succeeded in persuading someone that her mum was incapable of going anywhere.
Sue noted “It has been a struggle to get to this point. And a comfortable mouth matters! We have been doing our best to manage Mum’s food and drink for years with no support. I wonder if we could have asked for help sooner, and how we’d have done that. When is the right time to ask for help?” This highlights the struggles faced by many families caring for loved ones with advanced dementia, and the difficulties navigating assessment and accessing information.
What we’d like health professionals and family members to know
- Increasing difficulty with eating and drinking is to be expected as a person’s dementia advances. Changes may show that the person is nearing the end of life, but it’s important to discuss these with the healthcare professionals supporting them so that any reversible issues can be identified and addressed.
- Watching someone eat less, lose weight, and become increasingly frail, is incredibly difficult, and does not constitute a failure of care or attention. We should ensure this is clear when speaking with people and their families.
- Tube feeding has not been shown to improve quality of life, nutrition, or quantity of life. It has been shown to be probably associated with higher rates of pressure ulcers.
- At the end of life, other things become more important than nutrition, though it may be possible to offer little bits of food and drink for comfort, and good mouthcare should be ensured, as this also improves comfort.
- ‘Eating and drinking: information for family and friends as dementia progresses towards the end of life’ contains valuable information and practical advice, along with sources of support.
- Sources of help aside from your healthcare team include the Admiral Nurse Dementia Helpline: 0800 888 6678.
- Clearly documenting personal wishes in advance can be helpful in terms of care planning for any individual, including those in the earlier stages of dementia. For information about advanced care planning, and also Power of Attorney, see the Compassion in Dying website.
Editor’s note: Since publishing this blog, the Cochrane Review Palliative care interventions in advanced dementia (September 2021) has found that “Advance care planning interventions, compared to usual care, probably increase the documentation of advance directives and the occurrence of discussions about goals of care, and may also increase concordance with goals of care”.
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