Dementia is an umbrella term which includes several different conditions. Most people think of memory problems when they hear the term dementia, but there are a wide variety of symptoms. It is a disease of the brain, and not a normal part of ageing.
People who live with dementia may experience difficulties eating and drinking at some point. This can be due to the dementia affecting muscle strength or coordination. However, there are also some behavioural changes that can occur in dementia which cause problems eating and drinking. These can impact safety and the nutritional value of meals.
How does dementia affect swallowing?
The ability to swallow is dependent on the brain sending signals to the muscles in the mouth and throat. In addition, to get ready for swallowing, we need to recognise that we are about to eat or drink. Dementia can cause a difficulty with both aspects of eating and drinking. There are also some medications that can cause problems and a person may have other medical conditions that can cause swallowing problems.
If someone has a swallowing difficulty (Dysphagia), they may show some of these signs and need an assessment by a Speech and Language Therapist:
- Difficulty chewing food adequately
- Dribbling while eating or drinking
- Food falling out of the mouth
- Food getting stuck in the mouth or cheeks
- Food getting stuck in the throat
- A gurgly-sounding voice or noisy breathing when eating or drinking
- Coughing while eating or drinking
- Choking on food (this is a serious event and would require intervention such as back slaps or abdominal thrusts)
- Aspiration (food or drink entering the lungs – this can cause chest infections)
The aim of the assessment is to find out what kind of problems you have, and to provide advice and support to help you make decisions about the safest way to eat. The therapist will discuss any risks that could have an effect on your health, and explain what you can do that could minimise these risks. The therapist will not tell you what you should do or impose ‘rules’ about what you can eat. This will remain your decision. However, the therapist’s job is to make sure you can make an ‘informed decision’ and have all the facts.
NB: Sometimes people ‘bring food back’ or regurgitate after eating. These symptoms suggest a problem lower down in the oesophagus and may need other medical investigations.
Other problems are behavioural in nature. They can cause difficulties when eating and drinking, but are not a ‘swallowing’ problem. Such problems may include:
- You do not recognise what food is, and what it is for
- Not able to cut food up, or prepare it
- Not able to feed yourself, i.e. take food from plate to mouth
- Reduced appetite
- Dry mouth or excessive secretions
- Not remembering to chew food
- Sensitivity to lumps
- Changes to taste and smell
- Poor awareness of food bolus in mouth
- Bolus holding - keeping food in the mouth without attempting to chew or swallow it
- Eating too quickly
- Eating or drinking large mouthfuls at a time
- Not emptying mouth before having next mouthful
- Fatigue – particular times of the day are better or worse with periods of sleepiness
- Variability - this may be across a mealtime or day
Does swallowing ability change with the stages of dementia?
It is common to find that in the early stage of dementia, swallowing problems may be quite mild and have minimal impact on the ability to eat and drink. Maybe it affects medication-taking or may cause dribbling.
As the condition progresses, so may the dysphagia. You may find that it becomes difficult to chew and eat certain foods, and some changes may need to be made. Your Health Care Professional may recommend that you have food from within one of the IDDSI levels. Your ability to drink fluids may also be impacted, and there are IDDSI levels and many strategies or equipment that may help with drinking.
Over time the IDDSI recommendations may change. Some people find that food needs to become softer and may eventually need to be fully pureed. However, this is not always the case, and some people respond better to food that has more texture and needs to be chewed.
Speech and Language Therapists will help you to find a balance between ensuring that eating remains an enjoyable experience, whilst limiting the risks that may be associated.
Dementia can affect your ability to weigh up the risks to your health and your capacity to make decisions about what you can safely eat and drink. It may be necessary for your family members/Lasting Power of Attorney (LPOA) and your medical team to make these decisions on your behalf. The basis of any such decisions is to minimise the restrictions made to your diet and to act in your best interests.
If have capacity to make your own choices, you should be supported to do so. You should expect your Health Care Professional to explain the risks to you and assist you to make your decision. If you can discuss your preferences with your family/LPOA or your doctor, then do so. This will help them to know what you would want if you were unable to eat or drink certain things safely. It is helpful for them to know your attitude towards taking risks, and how important food and drink is to you.
How can people living with dementia manage or improve their swallowing ability?
Swallowing difficulties (as outlined above) are best assessed by a Speech and Language Therapist, who will give personalised recommendations to reduce risks and maximise nutrition and hydration.
However, there are lots of things you can do to help yourself.
Firstly, be aware that difficulties eating or drinking can form part of the overall picture with all dementias. If you notice that you are losing weight, showing signs of dehydration or getting recurring chest infections, then ask your GP to refer for a swallowing assessment.
You can also look out for any of the behavioural changes mentioned above, and try some of the strategies below to see if they help. It also helps to keep a written ‘diary’ of what you notice and what helps.
One of the recommendations may be to change the way food is prepared to it easier or safer to eat. This is called texture modification and is sometimes recommended as a way of continuing eating or drinking in the safest way.
This may be because meals take a long time if chewing gets more difficult and more tiring. By making food softer you will be able to eat more food and therefore maintain better nutrition. It also can make mealtimes quicker and less stressful for you.
Some people with dementia become very sensitive to lumps in food and spit these out. This may be another reason why pureed food is recommended. They will often accept some foods (e.g. a sandwich) and therefore will need to be offered the food that they are comfortable with in its ‘normal’ form, but have other items prepared to a smooth, lump-free consistency.
It may also be recommended if there are significant risks that you may choke on large pieces of food, and this could be life threatening. The risk of this happening is reduced if food is broken down into smaller or smoother pieces.
The IDDSI has been agreed by a wide range of professionals across the world, to help ensure that these modifications are made in the same way wherever you are. This means that if you go to hospital or respite, or are just purchasing ready meals for use at home, you will be able to have food that is safe for you to eat.
Your Speech and Language Therapist may suggest that you eat foods within one of the IDDSI levels. You should be given some information about what this means and how to prepare foods safely. There is information on the IDDSI website to help you. This modification may range from chopping food into very small pieces and avoiding certain items to pureeing your meals.
Many people find that it is convenient to have some frozen ready-made meals at the correct consistency available either to have daily or occasionally. The Birds Eye Soft Meals range at Alimento are prepared to IDDSI level 7 but can be very easily adapted to suit levels 4, 5 or 6 and we have developed video tutorials to show you how to do this.
These meals are particularly suitable for someone who does not tolerate lumps in food as they are a smooth texture.
This versatility means that these meals will be suitable if your ability varies due to fatigue over the course of a day or even over a single meal.
It is generally easier to eat if our body is positioned in a straight and symmetrical pattern. This means that you will need to sit so that your torso is as upright as possible, and not leaned to one side. You may need to think about where you sit to eat or drink, and to find a chair that supports you well, or to bolster your position with pillows or cushions. It usually helps digestion to stay upright for around 30 minutes after eating as well.
Professionals such as Physiotherapists or Occupational Therapists may be able to help with specialist seating if needed.
If you do not recognise what food is for, the following tips may help:
- Help with setting the table for mealtimes and talk about the meal
- Avoid patterned table-linen or settings. Plain colours with contrasts between plates and linens can be helpful
- Reduce distractions if you become distracted by your environment. Avoid TV, and sit in a quiet place
- Conversation is very important, although avoid talking with food in your mouth. It is often helpful for carers to explain what is happening and what the meal is in order to help orientate you
Adapted cutlery or crockery can be very helpful. Try to avoid items that are designed for children; there are many companies who provide adapted items for adults. These can include:
- Warming plates or plateguards
- Angled cutlery
- Cups that limit the quantity taken at each mouthful or give verbal prompts to have a drink
These can make the difference between independence or needed assistance.
Many issues can be managed by having some support to help you regulate or change the way you eat. Maybe you take too much in one mouthful, or eat too quickly. It can be difficult for people with dementia to change these behaviours and you may benefit from verbal prompts or reminders. This may be ‘light touch’ – just having someone sit with you giving reminders, or it may be more ‘hands on’, with someone providing ‘hand on hand’ support to help you more directly. It is always better for someone to ‘help you help yourself’ rather than just do it for you, as the process of holding a cup or cutlery and moving it to your mouth will help the swallowing process.
Sometimes it is necessary to have full assistance to eat and drink, but this should only be provided if you are unable to manage without it and other support has been tried first.
Mouth and teeth
It is always worth checking for mouth sores or painful teeth. Poorly fitting dentures, that move around whilst talking and eating, are best fixed in securely. If this cannot be done effectively, it may be better to remove them.
Do bear in mind that if you have no teeth, there will need to be some modification to what you are eating as chewing will not be effective. However, this does not mean that food has to be pureed, just softer or minced.
Good oral hygiene is extremely important to help reduce oral and chest infections. If you cannot do this yourself, you should have assistance to clean your mouth and/or dentures after eating.
Food preferences can change, so keep experimenting with different foods and flavours to keep as much variety in your diet as possible.
Different temperature can also be a solution if you become averse to certain foods. It may help to alternate cold and warm foods or to mix them up within a plate of food. Alternating food and drink can sometimes help, and trying very cold or fizzy drinks can stimulate the swallow. However not everyone can manage to switch between food and drink safely, so be sure to watch what is happening.
Nutrition and hydration
It is important to maintain good nutrition and hydration, and the particular difficulties caused by dementia can lead to a reduction in amount and quality of food eaten, and quantity of fluids taken.
This can lead to other health problems, such as urinary tract infections or poor wound healing and needs to be carefully monitored.
If you find that you are eating less, be a detective to try and identify why. These strategies may help:
- Have small portions of snack foods available in the cupboard or fridge (e.g. savoury snacks, pudding pots, ice cream, etc.)
- Fortify foods that you do eat to make them more nutritious . This is often called a Food First approach
- Consider nutritious shakes or drinks instead of water-based drinks
- Eat little and often. You may need to abandon the concept of ‘meal times’ and have more frequent smaller meals during the day
- Eat more at the best time of day, e.g. if you get tired by evening, try to have your main meal at lunchtime
- Don’t worry if you find you fancy foods that don’t ‘match’ the mealtime, i.e. you want porridge at teatime or pudding before your main course
- If you are eating level 4 (pureed) food, ensure you maximise nutrition when preparing it. Ready-made meals such as the Birds Eye softer food range can help as they are nutritionally balanced
- Keep a food diary that shows what you have eaten as well as how much of it you managed. This will help you see if you are eating less over time
- Monitor your weight and keep a record of this to see if you are losing weight unexpectedly
Seek medical help if you develop swallowing difficulties
If you (or someone you care for develops chewing or swallowing problems, seek medical advice in the first instance. You should consult a Healthcare or Medical Professional about your personal circumstances and before making any changes to your diet.
Alimento Paid Advertisement Feature. This article was prepared by Heather de la Croix in her personal capacity and for general information purposes only. The opinions expressed are the author’s own. Alimento does not warrant that the steps as described to modify the meals to different IDDSI levels will work for everyone. Our meals are prepared and sold as IDDSI Level 7 (Easy to Chew) and you should consult a Healthcare or Medical Professional about your personal circumstances and before making any changes to your diet.