Dietetics Leaflet: Dementia Care - Support with Eating and Drinking

Leaflet Details

Patient Information

A Practical Guide for Carers

This leaflet is designed to provide practical information for those caring for someone with Dementia. It tackles problems which can occur with eating and drinking in everyday life and provides general advice which may not be suitable for everyone. The advice provided is not a substitute for dietary advice given by a registered Dietitian. If you have other dietary concerns, you should seek advice from a healthcare professional such as your Dietitian, GP, District nurse or Community Psychiatric Nurse. If you have any concerns regarding the swallowing abilities of a person with Dementia, please discuss these with your GP or contact a Speech and Language Therapist (SLT) if the individual is under their care.

Common Difficulties with Eating and Drinking

The way Dementia influences a person’s life is different for each individual. This is also true for eating and drinking and not everyone will experience the same changes. When someone changes their eating habits or finds it a struggle to eat, it can be difficult and distressing for both the person and for those who care for them. Challenges can occur because:

• Reduced or limited recognition of hunger and/or thirst. Subsequently they may feel they have already eaten or had something to drink. This can also mean that a person forgets to take regular food or fluid at usual mealtimes and may require prompting and encouragement.
   
• Tasks such as preparing or cooking food may become difficult.
   
• Food preferences may change. For example, the person may prefer sweet foods or spicy foods which may be different from their previous likes and dislikes.
   
• The consistency of food that can be managed can change due to problems with recognising food, chewing, or swallowing.
   
• Cutlery may become difficult to use due to reduced co-ordination or the person may forget how to use cutlery.

Preparing for a Meal

Small changes can help to make mealtimes more enjoyable and may also help to improve the nutritional intake of the individual. Try to:

• Encourage the person to go to the toilet before meals if needed.
   
• Make sure that if glasses, hearing aids or dentures are worn that these are in place for the meal.
   
• Consider using adapted cutlery or cups if the person is struggling to grip standard types. E.g., try wide or chunky handled cutlery and cups.
   
• Make sure that foods and drinks are in plain sight and in reach of those who are able to eat and drink independently.
   
• Use a plain coloured plate / cup that contrasts with the food and table. This can help to make food easier to see on the plate.
   
• E.g., try to use primary colours (red, yellow, and blue) which are recognised for longer by individuals as their Dementia progresses.
   
• Coloured cups can help the person see and locate drinks (see-through beakers containing water are difficult to see.)
   
• Avoid distracting items on the meal table such as vases or lots of condiments.
   
• Consider the environment in which the person is eating. For example, improved lighting and relaxing music can lead to improved intake in some individuals.
   
• The person may have lost the ability to judge the temperature of foods and drink, therefore take care in giving hot foods and drinks before cooled to an appropriate temperature to avoid making eating uncomfortable or burns to the mouth.

Storing food

People with dementia may find it difficult to keep track of what food they have at home and how to store it safely. Try to:

• Store foods where they are visible and easily accessible for example, pouring cereals into clear tubs to make them easily visible and recognisable.
   
• Trialling chilled or frozen ready meals, they may require assistance to help heat these meals safely. Meals could be labelled with clear, large font cooking instructions to aid individuals.
   
• If using utensils for food preparation is difficult, ready-prepared, tinned, or frozen fruits / vegetables can be a convenient way to help someone eat a well-balanced diet.
   
• Adding notes onto cupboard doors, the fridge and freezer to prompt what foods are inside.
   
• Regularly checking stored foods for their best before date to dispose of any out-of-date products.
   
• Consider online food shopping services if the person struggles with going to the shops. This can be a good way to ensure some fresh food within the home. It is important to try and include the person in the ordering to make sure the food ordered fits their preferences.
   
• Consider food delivery services such as meals on wheels, contact your local council to see what is available in your area.

Mouth Care

Good oral hygiene reduces the risk of infection and decay. It also increases personal comfort, dignity and helps maximise taste from food. Bacteria build up in the mouth can also contribute to chest infections.

Provide regular mouth care (e.g., cleaning teeth) using a soft toothbrush, mouth swabs, mouth washes, etc.

Taste Changes

What if a preference for sweet foods develops?

When you are trying to encourage well balanced diet, it can be difficult when a person seems to only want sweet foods as these are often seen as unhealthy. However, with a little planning, sweet and sweetened foods can be part of a balanced diet. So how can you encourage a good variety of foods?

• Try naturally sweet vegetables such as carrots, sweetcorn, butternut squash, sweet potato, turnips, peppers, or peas. Vegetables provide a wide range of vitamins and fibre essential for good health.
   
• Use sweet and sour sauces such as sweet chilli sauce or ketchup, chutneys, or pickles to sweeten dishes.
   
• Add honey to vegetables such as carrots, parsnips, peas or green beans before serving.
   
• Try adding a little sugar or chocolate to mince, stew or potatoes.
   
• Serve meats with sweet sauces such as apple or cranberry sauce.
   
• If excess weight gain is a problem, try a granulated sweetener instead of sugar.
   
• Encourage milk-based puddings such as custard and stewed fruit, rice pudding, mousse, trifle, ice-cream, evaporated milk or cream with tinned or fresh fruit. A small amount of maple or golden syrup, jam or honey can also be used to increase the sweetness if needed. Milk is a good source of protein, energy, and calcium.

What if food that has been enjoyed for years is now refused?

People can experience changes in their food preferences. This can be due to a change in the way flavours are recognised, as well as a reduction in the number of taste buds as we age. Strong flavoured, spicy or foods previously disliked may now be enjoyed. For example: lasagne, curry, chilli, or pizza. If strong flavours are preferred or taste changes occur:

• Keep an open mind. Don’t exclude any food and try a range of foods until you find what that person enjoys now. Try to keep a list of current preferences and re-try foods from time to time.
   
• Try adding additional spices, herbs, onion, garlic, chilli, pepper, Tabasco, lemon juice or Worchester sauce to give dishes enhanced flavours.
   
• Offer table sauces, chutney, pickles and relishes, vinegar, mustard, salad dressings or tomato ketchup.

What if foods are being mixed together?

As an example, an individual may mix desserts with main meals or add drinks to savoury meals. This may look unpleasant, but it may be that they are unsure of which items go together. If meals and / or drinks are being mixed:

• Avoid putting several plates on the table at one time, as this can be confusing. Instead, serve one course at a time.
   
• Offer drinks after the meal instead of at the same time or offer small amounts during the meal and a full drink after the meal.

What if food is being spilled at meals?

• Try using wipe clean table mats and coverings and allow the person to eat as they wish even if this looks messy. Use a napkin to protect clothing from spillages, whilst maintaining dignity.
   
• Encourage the person to eat independently where possible. Although it may be difficult, try not to comment on the way they are eating as this could be upsetting. Where required, try verbal prompts and if necessary, provide some assistance such as hand over hand feeding.
   
• If using cutlery is a problem offer finger foods (see section below).
   
• Try using a lipped or high rimmed plate and/or non-slip mats to allow food to be moved around easily reducing spillages.

Weight loss and dementia

Some of the eating and drinking issues mentioned above which are associated with dementia can lead to weight loss and risk of malnutrition. It is important to recognise other underlying issues which can contribute to poor eating and drinking such as:

• Depression
   
• Poor dentition and mouth pain
   
• Infections or other acute illness
   
• Constipation
   
• Swallowing difficulties

If you begin to notice changes in a person’s appetite or eating and drinking habits, contact their GP or dentist to rule out other causes. Not eating or drinking enough can lead to issues like dehydration, constipation, urinary tract infections (UTIs) and weight loss, which may make dementia symptoms worse.

What if the person is struggling to complete meals?

• Allow extra time for meals as needed and provide one course at a time to avoid the individual from becoming overwhelmed.
   
• Serve one course at a time to keep food warm, this also helps to avoid confusion with foods.
   
• Prompting such as giving verbal advice or placing cutlery or a cup in the person’s dominant hand can help. Prompting also helps to maintain dignity and independence for as long as possible. Useful phrases include:
   
• “How’s your tea?” to encourage them to drink.
   
• “Have you nearly finished?” to encourage the person to continue to eat.
   
• As the condition progresses it may be necessary to assist with eating and drinking
   
• Dish up a small amount of food at any one time. Once eaten a further portion can always be served.
   
• Consider a little and often approach to oral intake, offering 5-6 small meals/snacks during the day rather than 3 big main meals.
   
• Consider plate warmers or insulated cups to keep food and drink warm for longer.
   
• Don’t worry if food is refused. Simply offer something again in 30 minutes to an hour. If food refusal continues, seek further advice from your GP as this may indicate other issues.
   
• When people with Dementia are eating together for example in a ward, care home or at a lunch group, avoid removing plates until everyone is finished. Removing plates early can be seen as a signal to stop eating.

What if wandering or becoming easily distracted at mealtimes is a problem?

No matter how hard you try, it can be difficult to get someone to eat a plated meal if they are unable to sit long enough to complete it. The constant movement by pacing or agitation will also burn up extra energy and contribute to weight loss. Try:

• Leaving out snacks along the route the person walks or place foods in their hand to prompt them. Try a variety of finger foods (see section on Finger foods for suggestions). Remove uneaten food to avoid spoilage.
   
• Encouraging high energy foods where possible, (see section on adding extra energy and protein).
   
• Changing the environment. Some people will benefit from the television or radio being switched off to limit distractions. Others may react better to background noise such as soothing music.
   
• If you notice times in the day when the person is more settled, consider changing mealtimes or offer additional snacks/ nourishing fluids at these times.
   
• Take a walk together before a meal and end in the dining area.
   
• If possible, consider eating together to model eating behaviour.

Tips on Providing Assistance with Meals

• Sit in front or to one side of the person at the same eye level to encourage a normal eating posture.
   
• Tell the person what is happening and what they are eating or drinking.
   
• Ensure they can see the food or fluid approaching their mouth.
   
• Make sure the size of mouthful is appropriate for them.
   
• Do not ask questions whilst they have food or drink in their mouth as this can increase the risk of aspiration/choking if they respond before swallowing. Wait until they have swallowed and cleared their mouth before chatting. Be comfortable with silence.
   
• Be patient and give sufficient time for them to swallow the first mouthful before offering the next. Do not rush mealtimes.
   
• Touching their lips with an empty spoon often prompts a second ‘clearing’ swallow to help clear any food left in the mouth.
   
• Throughout the eating or drinking process, give frequent reminders about the food or liquid to encourage continued eating / drinking and to swallow.

Adding Extra Energy and Protein into the Diet

Increasing energy and protein intake can be a challenge, especially if the amount someone will eat is small. The answer is not always to get the person to eat a greater volume of food but instead try ‘fortifying’ the food they currently eat with high energy and high protein items. Changing the pattern of mealtimes can also help *.

• Encourage 5-6 smaller meals / snacks rather than 3 larger meals per day.
   
• Encourage food at times in the day you notice they eat better. Some people eat better as the day goes on, whereas other people find that they eat better in the morning.
   
• Avoid low calorie, ‘diet’, reduced fat or reduced sugar foods.
   
• Add extra butter, grated cheese, soft cheese, oils or cream to potatoes, soups, sauces, or vegetables to add extra energy without increasing the volume.
   
• Spread jam, honey, marmalade, and butter thickly on breads, toast, scones, crumpets, and pancakes.
   
• Add extra sugar to puddings, cereals or hot drinks if taken.
   
• Use whole milk or cream in cereals, sauces, puddings, and drinks.
   
• Add a teaspoon of jam, syrup or honey to porridge, custard, rice pudding or semolina.
   
• Fortify full cream milk by adding two tablespoons of milk powder to 1 pint of milk and use as normal on cereal, in sauces and drinks. This will help to add energy and protein.

* People with vascular dementia and/or other health conditions such as diabetes, stroke or heart disease may need personalised dietary advice. Ask your dietitian how to appropriately increase energy and protein with less saturated fat and / or sugar.

Finger Foods and Nourishing Drinks

Finger foods and nourishing drinks can be a good alternative to plated meals when cutlery becomes difficult to use, or the person is always on the move. Try:

• Milk based drinks such as hot chocolate, malted drinks, milkshakes or milky coffee. Be careful with hot drinks - using insulated cups with lids will reduce the risk of injury for someone who is regularly on the move or who rarely remains seated.
   
• Fresh fruit juices, such as orange, apple, cranberry, grapefruit, or pineapple are a good source of vitamins. Some diluted blackcurrant drinks are also fortified with vitamin C and calcium which can also be useful to include.
   
• Sandwiches can be cut into small squares, triangles or rolled into a sausage shape. Why not try fillings such as:
   
• Egg or tuna mayonnaise (try adding sweetcorn, peppers, or diced cucumber)
   
• Meat or fish paste, or corned beef (try adding chopped tomato)
   
• Cold meats and cheese (try adding relishes, pickles, or chutneys)
   
• Peanut butter (try with mashed banana)
   
• Small savoury biscuits, crackers or mini oatcakes with spreadable cheese, meat / fish paste, pâté, or peanut butter.
   
• Scones with butter, jam and / or cream, teacakes with butter, crumpets with honey, jam, syrup or butter, fruit or chocolate muffins, cereal bars, fruit or malted loaf with butter, gingerbread, or individual cake slices.
   
• Pieces of fruit or vegetables such as sticks of carrot, slices of cucumber, cherry tomatoes, pineapple chunks, chunks of banana, berries, or mandarin segments.
   
• Toast fingers with cheese spread or melted cheese, jam, marmalade, pâté, meat pastes, peanut butter, or yeast extract spreads.
   
• Slices of pizza, quiche, or garlic bread.
   
• Small sausage rolls, cooked chicken pieces, cocktail sausages, scotch eggs, hard boiled eggs, or meatballs.
   
• Fish fingers, scampi pieces or fish cakes.
   
• Cut pieces of potato waffle, potato croquettes, chips, crisps, roast, or boiled potatoes.

Weight gain and dementia

Some people with dementia can gain weight. This can occur when a person forgets that they have already had a meal or cannot recognise that they are full. Being told you have already eaten can be distressing for the individual. The following tips can help:

• Try dividing the meal into two smaller portions, when food is requested the second time around give the second portion.
   
• Adding sweet condiment such as fruit sauces or ketchup to satisfy sweet cravings.
   
• Offer snacks such as fruit, low calorie jelly or light yoghurt as an alternative to an extra meal.
   
• Make ice-lollies with sugar free or diet drinks, these can then be offered as a snack or a second dessert.
   
• If a meal has already been eaten offer a drink instead - try lower calorie drinks such as tea or coffee (with sweetener - optional), reduced sugar flavoured water or diluted drinks, diet or sugar free fizzy drinks or water.
   
• Encourage physical activity such as walking, swimming or seated exercises for those with mobility issues.
   
• Storing foods out of immediate sight to avoid excessive snacking.

What if Constipation is a Problem?

It is important to encourage good bowel health as constipation can reduce appetite and contribute to increased confusion and agitation. Foods high in fibre help to bulk up stools, make them softer and easier to pass. However, powdered bran should be avoided as this can be a difficult type of fibre for the body to cope with and can reduce the absorption of important minerals such as iron. Try:

• Including extra fruit and vegetables - such as a side salad, diced or pureed vegetables in savoury sauces or dishes, stewed fruit, dried fruit or chopped fresh fruit such as banana with cereal, fruit as a snack or fruit juices with meals.
   
• Including fibre containing snacks such as cereal bars, a handful of dried fruit, digestive or oat-based biscuits or multigrain or seeded crackers.
   
• Using wholemeal breads and cereals such as Weetabix, Shreddies, Fruit and Fibre, Muesli, or porridge.
   
• Having soups which contain beans and pulses such as broth or lentil soup.

Note: When increasing intake of fibre, do so gradually to avoid abdominal discomfort and excess flatulence. Fluid intake should be increased at the same time as increasing fibre intake, to help make stools easier to pass. Aim for at least 8-10 cups of fluid per day (refer to next section).

If constipation persists, ask your GP for further guidance.

What if Fluids are a Problem?

In general, 8-10 cups of fluid (1 ½ - 2 litres or 3-4 pints) should be included every day to keep well hydrated. On hot days, when sitting in centrally heated areas or if there is an infection present try to encourage an extra 1-2 cups. Remember that poor hydration can contribute to constipation, increase feelings of tiredness, increase risk of urinary infections, reduce concentration, and add to confusion. Try:

• Offering small amounts frequently, about half or ¾ a cup at a time if larger amounts are not being taken.
   
• Using flavoured ice-cubes (made with juices) or ice-lollies to add extra fluids.
   
• Placing the cup in the person’s hand as a prompt if needed or offering a sip from a spoon to encourage drinking from the cup.
   
• If someone has a familiar or regular cup that they prefer, try to encourage its use.
   
• Remember fluids include soup, tea, fruit juices, cordials, diluted or fizzy drinks and water. A variety can help to maintain interest in drinking.
   
• If you are unable to be there to prompt the person to take fluids, try making up a jug or bottle of juice and placing it within view for those who can drink independently. Ideally try to use a clear plastic jug or bottle with a coloured fluid e.g., squash / juice so that the fluid can be seen. If other carers such as relatives, friends or care services are visiting, this can be pre-prepared and placed in the fridge.

What if eyesight is a problem?

If a person has problems with their sight and are unable to see foods and drinks, it is important to assist them and not assume they are not hunger if they don’t start eating when food is presented. Try to:

• Make sure if a person wears glasses or other visual aids that these are worn at mealtimes.
   
• Make sure the environment is well lit.
   
• If the person is not able to see food in front of them, try to describe the food and discuss the smell with them.
   
• Contrasting plain colours of food, crockery and cutlery may help an individual to identify objects. For example, a green tablecloth, red plate, and mash potatoes.
   
• When leaving drinks and snacks out for someone, make sure you can describe to them where they are and how to find them.

Swallowing is a problem?

Swallowing and feeding difficulties are known to affect approximately 65% of people with dementia. Swallowing difficulties can create a higher risk of malnutrition and dehydration. Some of the signs that indicate someone may have swallowing difficulties include:

• A gurgly voice after eating or drinking.
   
• Coughing or choking on liquids or food.
   
• Recurrent chest infections.
   
• Throat clearing during or after eating and drinking.
   
• Shortness of breath during or after eating and drinking.
   
• Difficulty managing saliva.
   
• Weight loss.

If any of the above signs / symptoms are present, please discuss a referral to Speech and Language Therapists (SLT) with your GP. Advice from SLT will include swallowing strategies and appropriate position to minimise the risk of aspiration or choking for the person with an unsafe swallow.

Modified Food Textures

Slow eating and failure to complete meals may result in weight loss. Making food easier to chew and swallow may reduce the time taken to consume the food.

• Be aware that modified food consistencies advised by SLT, especially pureed food may contain less nutrition than ordinary food. Adding extra energy and protein to a meal through food fortification (section above) may therefore be necessary.
   
• Always follow the advice of your GP, dietitian and SLT

How to Help with Hospital Stays

Hospital environments can be disorientating and frightening for a person with Dementia and may make them more confused than usual. They might find the ward environment loud and unfamiliar and may not understand why they are there. The following tips can help:

• Ensure the patients glasses, hearing aid or dentures are made available, and the nursing staff are made aware of the need for them.
   
• Bringing familiar plates, mugs or cutlery from home may help the patient recognise the need to eat.
   
• Remove distracting items from the over-bed table during meals.
   
• If using cutlery is a problem, encourage finger foods to promote independence.
   
• Eating with familiar people can help prompt memory and increase nutritional intake. Check with nursing staff if you are able to visit the patient at mealtimes to help with eating and drinking.
   
• Encourage food and fluids little and often as patients often do not have a large appetite. Nutritional needs are more than likely to be met via six or so small meals and snacks per day, than three bigger meals.
   
• Check with the nursing staff if you can bring foods/snacks from home to provide patient with their food/drink preferences.
   
• Offer lots of encouragement with gentle reminders and prompts to eat. Naming foods and drinks can help trigger memories which in turn may help with recognition of food items and improve food intake. Continual reassurance may be needed.
   
• The texture of food offered may need to be altered if chewing, swallowing, and tiredness reduce the amounts eaten. Try offering foods that are easily chewed and moist (e.g., consider offering plenty of gravy / sauce).
   
• Presentation of food is important. In the case of pureed meals, keep the different foods separate to enhance the quality of the eating experience.
   
• If you regularly notice coughing after swallowing, notify nursing staff who may make a referral to speech and language therapist.
   
• If the person has already received specific advice from a speech and language therapist, please bring their advice sheet into the hospital and ensure nursing staff are made aware of any diet or drinks requirements.

Nutrition in the later stages of Dementia

Seeing a person with advanced Dementia gradually eating less and less can be very distressing and many relatives wish to do all they can to help their loved ones.

However, it is important to be aware that because of the effects of the disease it may not be possible to maintain nutritional health, and weight loss is likely to be an inevitable outcome.

It is expected that a person with Dementia will change their preferences for eating and drinking from nutritional benefit, to one of oral comfort and quality of life. Careful hand feeding can provide both stimulation and comfort through human contact and social interaction.

Families are often very concerned that as food and drink intake diminish, their loved one will be feeling hungry and thirsty. However, there is growing evidence that people can experience comfort from very small intakes of food and drink. Your healthcare professional will guide you regarding artificial fluid requirements and show you how to maintain comfort with regular mouth and lip care.

Tube Feeding

Feeding tubes are sometimes used if a person is having difficulties with eating or swallowing, which often happens in the later stages of dementia. Registered healthcare professionals such as Doctors and Dietitians will assess the need / appropriateness for inserting a feeding tube to support a person’s oral intake.

It is important to note that tube feeding can result in infections and be distressing for the person. Sometimes physical restraints may need to be used to prevent the person pulling the tube out and causing injury. Tube feeding also removes the human contact and social interaction associated with hand feeding which may impact on the person’s quality of life.

Evidence from the last 40 years tells us that tube feeding a person with advanced dementia is no more likely to maintain nutritional health than continued food intake by mouth and it will not prevent further deterioration or progression of the dementia. A carefully monitored, assisted-feeding program that focuses on comfort may be most appropriate. (Adapted from Alzheimer’s Association)

Adapted with kind permission from NHS Lanarkshire with input from the Older Person's Mental Health Speech and Language Therapy Service, South West Surrey, Virgin Care and North West Surrey Dementia Partnership Group.

Further Information

• Alzheimer’s Society
  https://www.alzheimers.org.uk/
   
• Dementia UK
  https://www.dementiauk.org/
   
• Age UK
  https://www.ageuk.org.uk/
   
• Patient UK
  https://patient.info/brain-nerves/memory-loss-and-dementia
   
• NHS
  https://www.nhs.uk/conditions/Dementia/
   
• Carers UK
  https://www.carersuk.org/help-and-advice/your-health-and-wellbeing/the-importance-of-good-nutrition/dementia-and-nutrition/

Department of Dietetics
St Peter’s Hospital - 01932 722202