One of the topics I haven’t covered in depth on this blog is refusal to eat. So many of my blog posts are inspired by our experiences with my dad, and one thing he never did was refuse to eat, so that is perhaps why I’ve overlooked this topic.
However, with a close family member who is living with dementia having been through a very traumatic few weeks of injury and being a hospital inpatient, this issue has become a personal concern, adding to my extensive experience of it from a professional perspective in my consultancy work with care providers.
Food refusal is an awful thing to witness for anyone supporting a person who is refusing to eat. As family members or professional care and support staff, we know that eating is vital to live, and alongside that of course there is the enjoyment and happiness that our favourite foods and meals provide in our lives. Seeing someone you love (or a person you are supporting) refusing to eat also fuels concerns that the person will perhaps die before their time.
Why a person may refuse to eat
I’ve seen refusal to eat once before in our family with a great aunt who, having lost her sister some years previously, became ill herself, ended up in hospital and of her own free will – without the ravages of dementia in her brain – decided she no longer wanted to eat as she wanted to join her sister and knew that not eating would hasten that.
For a person with dementia, it’s unclear if there would be such a crystalised decision-making process, although I would never rule it out. More likely though the person isn’t eating for reasons including:
- The person has forgotten how to eat.
- The person has forgotten that they need to eat or believes that they have eaten when they actually haven’t.
- The person doesn’t like what they are being given to eat.
- The person doesn’t feel comfortable eating in their current surroundings or doesn’t want to eat alone (or in the company they have).
- The person needs to follow certain rituals or processes in order to eat – for example, they only want to eat something that they have prepared, or they want to observe certain customs, like saying a prayer before eating, but they have forgotten how to.
- The person is suspicious of the food they are being given, perhaps believing it has been poisoned, and therefore doesn’t want to eat it.
- The person has a physical health issue that is making eating uncomfortable or unpleasant.
- The person dislikes the feeling that they have after eating, perhaps due to a digestive issue.
Discovering what the particular reason might be isn’t always easy – some gentle questioning may uncover what the problem is – but bombarding the person with questions or making the issue bigger than the person is comfortable with may turn it into something confrontational, which is then counterproductive to supporting the person to eat.
Positive approaches to food refusal
Two alternative approaches would be to:
Observe the person – look for signs that might explain what the issue is, for example pained expressions, a clear dislike on the person’s face for what they have been given to eat, or an obvious physical issue, like coughing, that might indicate a swallowing problem.
Observe the environment – Is it conducive to a pleasant mealtime experience? It is too noisy? Are there distractions? Is there an unpleasant smell? Is it comfortable?
Supporting the person to eat again
How you support the person to eat again will most likely require a range of approaches and a lot of patience and persistence. You may also need to become something of a detective to piece together the clues that will help you to support the person to eat again.
With my consultancy clients, I recommend approaches that include the following:
- Instead of having three meals a day, and putting a huge emphasis on eating those meals, adopt a grazing approach throughout the day. Have food available constantly, with items that can be kept at room temperature left for the person to pick up as they feel like it, and items that need to be kept hot or cold periodically offered. Try both finger foods and foods that require cutlery.
- Don’t be wedded to what must be eaten when. Foods associated with breakfast can be eaten at supper-time if necessary. Lunchtime soup can be eaten at 7am if it’s wanted. It really doesn’t matter what is eaten when, so long as something is being eaten.
- Don’t just focus on eating, think about the sensory experience of food. For example: Could the person help to prepare some food – handling it, perhaps trying some of it if it’s safe for them to do so (not raw meat obviously!)? If the person isn’t involved in the preparation, could they still be in the room to enjoy the smells associated with food preparation/cooking (the smell of freshly baking bread or cakes can be particularly appealing)? When the food is prepared, how appetising does it look? Food that looks delicious and smells amazing may help to spark taste buds.
- Talking of taste buds, a person with dementia may find familiar foods increasingly bland if their taste buds are fading – try introducing some stronger flavours and flavours the person hasn’t previously experienced. You might need to season food more, for example by using herbs and spices, to make it more appealing. You may also find the person prefers sweeter foods as their dementia progresses.
- Analyse the food you are offering. Think about textures and consistencies – lumpy foods, chewy foods, things that are too runny or too thick – experiment with offering different foods to try and isolate any textures or consistencies that the person loves or hates.
- Make a food life story. Do some life story work with the person, focusing on their earlier life, places they went to, experiences they enjoyed. Prompt with questions or suggestions of foods that might have been consumed on holiday, at the beach, at work, at sports matches etc. If you can build up a picture of foods that are associated with experiences, you can try to replicate both the experience and the food that went with it (again, you may need to be quite creative, making a makeshift beach at home or watching a vintage sports match on the TV).
- As an opposite approach, throw out the rule book! Yes, we all have our favourite foods, which are often long-standing favourites, but a person with dementia may inexplicably go off them and never want them again. Of course offer favourites first, but if they are rejected get creative and try new things.
- Think about the social experience of eating. Would the person try eating if you ate with them? What about making a picnic or a buffet and eating together?
- Consider the environment. Try eating in different rooms or outdoors (weather permitting). Perhaps even a picnic in the car or the shed! Eat at the table, at different tables around the home or on a lap. If the person needs to walk, walk with them and offer some fingers foods that are safe to eat without posing a choking hazard. Reduce noise and distractions (unless playing music or having the TV on actually helps the person). Make sure the room is an optimal temperature, not too hot or too cold, and get some fresh air in if the room has any lingering smells.
- Consider how comfortable the person is. Is their waistband tight? Are their sleeves dropping onto their plate? Do they need the toilet? Is their pad soiled? Try to maintain optimum comfort for the person to aid their relaxation in the hope that this may prompt better eating.
- Mix things up. Whatever you’ve tried to date that hasn’t worked, change it. Whilst routine is very important for some people with dementia, for other people routine can also become part of the problem. Make changes individually – so try an environmental change one day, a different food the next etc, so that if you do find something that encourages the person to eat, you can pinpoint what it is and hopefully replicate it. Keep a diary if you are afraid you will lose track of what you’ve tried, and within that you can also document what worked and what didn’t.
- Consider if the person has any underlying health conditions affecting their eating – dental issues, swallowing problems, digestive issues, undiagnosed pain, the side effects of medication etc. If you suspect any of these issues, seek medical advice.
- Consider food supplements if the person isn’t eating well. These will help the person to maintain a basic level of nutrition and ensure that they are getting some vitamins and minerals whilst you work on ideas to encourage eating. Talk to the person’s doctor if you think supplements are needed.
Hopefully from these suggestions you’ve got the idea that it really is exactly as I said earlier – a process of experimentation and detective work that family carers and professional alike need to approach with patience and persistance. In almost every situation I’ve come across where a person with dementia wasn’t eating, trying something I’ve suggested above made the difference. Sometimes only temporarily, but never-the-less I always advocate trying, and if/when you do find what helps the person to eat again the reward of seeing food being consumed makes it all so worthwhile.
Until next time…