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This section is divided into several sections to help you care for your loved one. Please click on the topics below:

 

Understanding and Respecting the person with Dementia

Health Matters

Dressing

Washing and Bathing

Nutrition

Maintaining Quality of Life

 

Understanding and respecting the person with dementia

It's very important that people with dementia are treated with respect. It is important to remember that a person with dementia is still a unique and valuable human being, despite their illness. If you can understand what the person is going through, it might be easier for you to realize why they behave in certain ways.

When a person with dementia finds that their mental abilities are declining, they often feel vulnerable and in need of reassurance and support. The people closest to them - including their careers, health and social care professionals, friends and family - need to do everything they can to help the person to retain their sense of identity and feelings of self-worth.

Helping the person feel valued

The person with dementia needs to feel respected and valued for who they are now, as well as for who they were in the past. There are many things that the people around them can do to help, including:

•  trying to be flexible and tolerant

•  making time to listen, have regular chats, and enjoy being with the person

•  showing affection in a way they both feel comfortable with

•  finding things to do together.

 

What's in a name?

Our sense of who we are is closely connected to the names we call ourselves. It's important that people address the person with dementia in a way that the person recognizes and prefers.

•  Some people may be happy for anybody to call them by their first name or nickname.

•  Others may prefer younger people, or those who do not know them very well, to address them formally and to use courtesy titles, such as Mr. or Mrs.

 

Respecting cultural values

Make sure you explain the person's cultural or religious background, and any rules and customs, to anyone from a different background so that they can behave accordingly.

These may include:

•  respectful forms of address

•  what they can eat

•  religious observances, such as prayer and festivals

•  particular clothing or jeweler that the person (or those in their presence) should or should not wear

•  any forms of touch or gestures that are considered disrespectful

•  ways of undressing

•  ways of dressing the hair

•  how the person washes or uses the toilet.

 

Acting with courtesy

Many people with dementia have a fragile sense of self-worth; it's especially important that people continue to treat them with courtesy, however advanced their dementia.

•  Be kind and reassuring to the person you're caring for without talking down to them.

•  Never talk over their head as if they are not there - especially if you're talking about them. Include them in conversations.

•  Avoid scolding or criticizing them - this will make them feel small.

•  Look for the meaning behind their words, even if they don't seem to be making much sense. Whatever the detail of what they are saying, the person is usually trying to communicate how they feel.

•  Try to imagine how you would like to be spoken to if you were in their position.

 

Respecting privacy

•  Try to make sure that the person's right to privacy is respected.

•  Suggest to other people that they should always knock on the person's bedroom door before entering.

•  If the person needs help with intimate personal activities, such as washing or using the toilet, do this sensitively and make sure the door is kept closed if other people are around.

•  Everyone involved - including the person's friends, family members, careers, and the person with dementia themselves - reacts to the experience of dementia in their own way. Dementia means different things to different people.

 

There are lots of things you can do to help the person with dementia feel good about themselves. This factsheet offers some suggestions.

 

Helping the person feel good about themselves

When you spend time with someone with dementia, it is important to take account of their abilities, interests and preferences. These may change as the dementia progresses. It's not always easy, but try to respond flexibly and sensitively.

Supporting the person to express their feelings 
Dementia affects people's thinking, reasoning and memory, but the person's feelings remain intact. A person with dementia will probably be sad or upset at times. In the earlier stages, the person may want to talk about their anxieties and the problems they are experiencing.

•  Try to understand how the person feels.

•  Make time to offer them support, rather than ignoring them or 'jollying them along'.

•  Don't brush their worries aside, however painful they may be, or however insignificant they may seem. Listen, and show the person that you are there for them.

 

Offering simple choices

•  Make sure that, whenever possible, you inform and consult the person about matters that concern them. Give them every opportunity to make their own choices.

•  Always explain what you are doing and why. You may be able to judge the person's reaction from their expression and body language.

•  People with dementia can find choice confusing, so keep it simple. Phrase questions so that they only need a 'yes' or 'no' answer, such as 'Would you like to wear your blue jumper today?' rather than 'Which jumper would you like to wear today?'

 

Tips: Maintaining Respect

•  Avoid situations in which the person is bound to fail, as this can be humiliating. Look for tasks that they can still manage and activities they enjoy.ive plenty of encouragement. Let them do things at their own pace and in their own way.

•  Do things with the person, rather than for them, to help them retain their independence.

•  Break activities down into small steps so that they feel a sense of achievement, even if they can only manage part of a task.

•  Our self-respect is often bound up with the way we look. Encourage the person to take pride in their appearance, and compliment them on how they look.

 

Supporting other careers

Make sure that anyone involved in caring for the person has as much background information as possible, as well as information about their present situation. This will help them see the person they're caring for as a whole person rather than simply 'someone with dementia'. It may also help them to feel more confident about finding conversation topics or suggesting activities that the person may enjoy.

 

If someone is not used to being around people with dementia, it may help to emphasize the following points:

•  Dementia is nothing to be ashamed of. It is no one's fault.

•  If the person tends to behave in ways that other people find irritating or upsetting, this may be because of the dementia - it's not deliberate.

•  The person with dementia may remember the distant past more clearly than recent events. They are often happy to talk about their memories, but anyone listening needs to be aware that some of these memories may be painful.

 

Always try to remember

•  Each person with dementia is a unique individual with their own individual experiences of life, their own needs and feelings, and their own likes and dislikes. Although some symptoms of dementia are common to everyone, dementia affects each person in different ways.


 

Health Matters

If you are caring for someone with dementia, it's important to help them remain as fit and healthy as possible - both physically and mentally.

As the career, you need to keep an eye on the state of the person's health. As the dementia progresses, they will become less able to identify health problems or to tell you about them, so look out for signs that they might be in pain or discomfort.

The better they feel, the more they can enjoy life, making life more pleasurable for both of you.

 

Staying healthy

When someone has dementia, it's important that they remain as fit and healthy as possible - both physically and mentally. The better they feel, the better life will be for them and those around them. A person's health and well-being is affected by many different factors. Use these pointers to check whether any adjustments can be made to the person's lifestyle or environment to boost their health.

 

Exercise

Everyone needs some form of regular exercise, whether or not they have dementia. Try to find a form of exercise that will be enjoyable - ask your DOCTOR, occupational therapist or physiotherapist for suggestions.

Exercising can:

• encourage mobility - and therefore, independence - for as long as possible

improve circulation and help prevent stiffness and muscle wasting

• aid relaxation, promote a sense of calm, and help ensure a good night's sleep

reduce anxiety, stress and depression.

 

Mental well-being

Mental health and well-being is as important as a person's physical health. When someone has dementia, they need:

reassurance that they are still valued, and that their feelings matter

• freedom from as much external stress as possible

appropriate activities and stimulation to help them to remain alert and motivated for as long as possible.

 

Eating well

Eating too little or missing out on essential nutrients will reduce a person's resistance to illness and can make someone with dementia feel more confused. If someone refuses to eat a balanced diet, the DOCTOR may suggest alternatives, or may prescribe vitamins or supplements.

•  Eating fatty, sugary foods can cause considerable weight gain, leading to further health problems. Eating sweet foods can cause peaks and troughs in energy levels, exacerbating mood swings.

•  If someone with dementia is eating so much that they feel uncomfortable, those around them may need to tactfully limit the amount of food available or offer low-calorie alternatives.

If someone with dementia forgets to eat, they may need to be accompanied at mealtimes. Having Meals on Wheels delivered won't help if the person forgets to eat them.

•  It is very important to drink enough fluids. Dehydration is a health risk and can increase confusion in someone with dementia.

 

Keeping warm

Becoming cold for any length of time is a serious health risk - particularly for older people and those who are inactive and have poor circulation. A severe drop in body temperature can cause hypothermia, which can result in loss of consciousness, and even death. The person you are caring for may feel the cold far more than you do, but they may not realize it or may be unable to tell you.

Try to make sure that any rooms that are occupied during the day are kept warm. Draught proofing and roof insulation will help.

• Encourage wearing layers of clothing, ideally with natural fibers, such as wool.

•  If someone feels very cold, they may need to wear a hat, gloves and warm socks if they go out in cold weather - and indoors too, if necessary.

 

Tackling constipation

This is a common problem among older people and those who are less physically active. It can cause pain and discomfort, and can also increase the person's confusion. If problems persist, consult the DOCTOR. Rather than using laxatives, you can help prevent constipation through:

•  providing plenty of foods that are high in fiber, such as cereals, whole meal bread, fruit and vegetables

•  providing fiber supplements (available from health food stores and on prescription)

•  offering plenty of liquid

•  encouraging regular exercise.

 

A good night's sleep

We all need a good night's rest, but dementia can cause people difficulties in getting to sleep. People can become confused about night and day, and may get up in the middle of the night, thinking that it is morning. Things that can help include:

•       limiting daytime naps, and ensuring a range of stimulating activities - someone is more likely to doze off if they are bored

•       reducing fluid intake in the evening, and avoid stimulating drinks such as tea and coffee

•       taking some form of exercise during the day

•       finding soothing and relaxing ways to encourage the person to sleep, such as giving them a warm milky drink at bedtime.

 

Dealing with hearing problems

In people with dementia, poor hearing can add to feelings of confusion and isolation. If someone seems to have a hearing problem, ask the DOCTOR for a referral for a hearing test.

If someone you know has hearing problems, the following tips may help:

•  If the person uses a hearing aid, make sure it's switched on and working properly. As dementia progresses, hearing aids can become too difficult to manage and may simply add to the person's confusion.

If the person has hearing difficulties that a hearing aid can't resolve, try to attract their attention before speaking to them. Touch them on the arm to indicate where you are, make sure you're facing them, and then speak slowly and clearly.

If the person doesn't understand you, try altering the form of words you're using rather than repeating the same phrase more loudly. Make sure there's no distracting noise, such as television, radio or loud voices. Remember to keep your questions simple, and never ask too many questions at a time, as this may cause further confusion and distress.

 

Ensuring good eyesight

Problems with sight can increase confusion in people with dementia, and can make it harder for them to recognize people or objects. Optometrists have special techniques for assessing sight, even for people in the later stages of dementia. They should also check for cataracts and glaucoma, both of which can lead to blindness if left untreated, as well as for certain other medical conditions.

If you know someone with dementia who has sight problems, you may need to tactfully remind them to wear their glasses, and check that their lenses are clean.

 

Healthy teeth and gums

If someone has dementia, it is important that they have regular dental check-ups to make sure there are no problems with their teeth, gums or dentures. Any pain or discomfort will cause distress, and may lead to difficulties with eating and drinking.

If you notice that someone you know is having any problems, such as swollen gums, ulcers, broken teeth or missing fillings, let the dentist know at once. It can help to explain that the patient has dementia. Encourage or help the person to follow the dentist's instructions, such as brushing and flossing their teeth, and cleaning their dentures regularly.

 

Foot care

Healthy feet are essential if the person with dementia is to remain mobile and active. It is important that people with dementia have their feet cared for in the following ways:

•  Wearing well-fitting shoes - although slippers are comfortable, they should not be worn for more than a few hours at a time, as they don't offer enough support.

•  Making sure their feet are kept clean and dry, with toenails cut short.

•  Addressing problems such as corns or ingrown toenails - by consulting a state-registered chiropodist.

•  Contacting the DOCTOR in case of other problems - for example, if any part of the foot becomes swollen or painful, or if the skin changes color.

 

Depression and anxiety

A certain amount of depression or anxiety is very common in people with dementia - particularly in the early stages, when they may be aware of their declining abilities. Those around them can help in the following ways:

•  If they are able to talk about what is troubling them, listen and show that you are trying to understand their feelings. Do not brush their feelings aside or attempt to jolly them along. Their feelings are very real.

•  Offer affection, reassurance and support.

•  If you feel that the person is extremely depressed or anxious, ask the DOCTOR for advice - the sooner the better.

 

Spotting a problem

It is important that everyone involved in the life of the person with dementia keeps an eye on their state of health. As the dementia progresses, they may become less able to identify health problems or to tell others about them, so it is important to look out for signs that the person might be in pain or discomfort. If you help them wash or dress, discreetly look out for cuts and bruises in case they have fallen and forgotten to tell you. Also look out for rashes or sore places. Any red patches that don't go away after a few hours could be pressure sores, so tell the DOCTOR or  nurse immediately.

 

 


Dressing

The way we dress says a lot about who we are. For most of us, dressing is a very personal and private activity − and one in which we are used to making our own decisions. As dementia progresses people increasingly need more help with dressing. It is important to enable people with dementia to make their own choices for as long as they can and, if they do need assistance, to offer it tactfully and sensitively.

 

Tips for helping a person with dementia dress

If you are involved in helping someone with dementia choose what to wear, there is plenty you can do to help them retain some choice and to express their own identity and personal style, while making sure that they are clean, warm and comfortable. Here are some tips:

 

Encourage independence

•  Lay out clothes in the order the person will put them on. Remind them sensitively which garment comes next, or hand them the next item that they need.

•  If the person is confused, give instructions in very short steps, such as, 'Now put your arm through the sleeve.'

•  If mistakes are made − for example, by putting something on the wrong way round − be tactful, or find a way for you both to laugh about it.

•  Label drawers where particular items of clothing are kept, or store whole outfits together.

 

Help the person stay comfortable

•  Make sure the room is warm enough to get dressed in.

•  Ask if the person would like to go to the toilet before getting dressed.

•   Try to keep to the person's preferred routine − for example, they may like to put on all their underwear before putting on anything else.

•  It can be useful if the person wears several layers of thin clothing rather than one thick layer, as they can then simply remove a layer if it gets too warm.

•  Remember that the person may no longer be able to tell you if they are too hot or cold, so keep an eye out for signs of discomfort.

 

Give the person choice

•  Wherever possible, ask the person what they would like to put on. Someone with dementia needs the dignity of having choice in what they wear, but too many options can be confusing, so it may be best to make suggestions one at a time.

•  If the person has lots of clothes, put the things they wear most frequently somewhere accessible. This will make it easier for the person to choose.

 

Go clothes shopping together

•  If you're buying clothes for the person with dementia, try to take them with you, so that they can choose the style and the colors they prefer.

•  Check the person's size before buying. They may have lost or gained weight without you realizing.

•  Look for clothes that are machine washable and need little ironing, as this will save time.

•  Remember that the person with dementia may not recognize new clothes as belonging to them if they have no memory of having bought them, and may not want to wear them.

 

Change clothes regularly

Sometimes people with dementia are reluctant to undress even when they go to bed, or will refuse to change their clothes. It's important to make sure the person changes their clothes frequently, and to find ways to do this without upsetting them. Here are a few strategies you could use to persuade them:

•  Remove the dirty clothing and put clean clothing in its place when the person is in the bath or shower.

•  Persuade them to change because someone is visiting.

•  Say how much you'd love to see them wearing something new.

 

Accept any unusual clothing choices

It is important to respect the person's choice of what to wear. As long as it does no harm, it's probably better to accept the person dressing in an unusual way, or wearing clothing that is out of place, than to have a confrontation. If the person is determined to wear a hat in bed, for example, or a heavy coat in summer, try to respect their choice.

 

Making dressing a positive experience

Helping a person to look the way they want to look is an important way of maintaining their confidence. Regularly compliment the person on the way they look, and encourage them to take pride in their appearance.

 

Allow enough time

If you are helping someone with dementia to dress, allow plenty of time so that neither of you feels rushed. They may take longer to process information than they used to, and this will affect their ability to make choices, but if you can make dressing an enjoyable activity, the person will feel more relaxed and confident.

•  Try to use the time to chat about what you are doing, and anything else that might be of interest.

•  If the person resists your efforts to help, try leaving them for a while. They may be more amenable if you try again a little later.

 

Other aspects of grooming

When the person is dressed, they might like you to help them with their hair. A woman may like to wear make up, perfume or jeweler, and this is another opportunity for her to have a say in her appearance. If she enjoys having her nails painted, you might like to do this for her. A man may like to use aftershave or a hair product such as Brylcreem, or to wear braces or cufflinks.

 

Tips: Practical ideas for what to wear

If the person has some difficulties with dressing, or dressing has become a struggle, it may help to look for clothes that are easy to put on and take off, such as clothes with larger neck openings and front fastenings, or with no fastenings, or to make some adaptations:

•  Use Velcro fastenings or poppers rather than buttons.

•  Shoes with laces may be difficult for someone with dementia to manage. Try well-fitting slip-on shoes or shoes with Velcro fastenings, or replace shoelaces with elastic.

•  The person shouldn't wear slippers for more than a few hours, as they may not offer enough support to the feet.

•  For women, front-opening bras may be easier to manage. Try to avoid self-supporting stockings, as they can cause circulation problems.

•  For men, boxer shorts may be easier to manage than Y-fronts.

Remember that if someone is not enjoying wearing something − either because it is physically uncomfortable, or because they don't like it, or it is new and seems unfamiliar − this may cause them distress and discomfort.


Washing and bathing

For most adults, washing is a personal and private activity. When you are helping someone with dementia to wash, it is important to be sensitive and tactful and to respect their dignity. A few simple considerations can help to ensure that washing and bathing remains a relaxing experience for both of you.

 

Personal care, including washing and bathing, is a common source of anxiety for those who care for people with dementia. It's not hard to understand why − most of us have been carrying out these activities on our own since we were small children. However, there are some particularly common reasons for anxiety among people with dementia. These include:

• Deep bath water − Deep water can make some people feel worried. You can reassure them by making sure the bath water is shallow, or by setting up a bath seat for them to use. Some people may prefer a full wash to sitting naked in a bath, so it is important to find out what the person prefers or is used to doing.

•  Overhead showers − Some people find the rush of water from an overhead shower frightening or disorienting. A hand-held shower may work better.

•  Self-consciousness − The person with dementia may find it embarrassing to be undressed in other people's presence. One way to overcome this is to uncover only the part of their body that you are washing at the time, leaving the rest covered.

•  Isolation − Some people may become anxious if they are left on their own, and may want you to stay with them while they are washing.

•  Incontinence − This may be a sensitive issue for both of you. If the person has an accident, they may feel ashamed. They may refuse to admit that it has happened, or to wash afterwards. Try to be reassuring, and adopt an approach that fits with the nature of your relationship with the person. A matter-of-fact approach, or humor, often works well.

 

Talk to the person about how you feel about bathing them. Ask how they feel, and how they would prefer you to do things. Try to find ways to help them remain independent in as many ways as possible, and offer support as unobtrusively as you can. Here are some practical tips.

 

Encouraging independence

We all have our own routines for personal care - particularly when we get up in the morning. Try to encourage the person with dementia to continue with these routines for as long as possible. Take the time to think about which routines work best, as well as the person's preferences, so that you can help them carry on with their normal routine. Where do they like to get undressed? Do they prefer a bath or a shower? What toiletries are they used to? What dental care do they need?

 

Tips: encouraging independence

When someone's nerve pathways are damaged, it becomes harder for them to process a lot of information at once, so if the person seems confused, it can help if you break the process down into small stages.

•  Offer tactful reminders − for example, remind them which step comes next in their process of personal hygiene.

•  Offer practical help − for example, by handing the person the soap at the point when they would normally wash, or holding out a towel when it's time for them to dry themselves.

 

Safety precautions

There are some very practical considerations when someone with dementia is using the bathroom. There is the potential for the person with dementia to be scalded with hot water, to slip on the floor, or get locked in, or for the career to strain their back.

 

Tips: ensuring safe bathing

•  Check that the floor is not slippery.

•  Make sure that the room is warm before the person undresses. Older people are more sensitive to heat and cold than younger people.

•  Check that the water temperature is not too hot or too cold. You can buy a heat sensor that sticks to the side of the bath and changes color if the bath water is too hot, to prevent scalding.

•   You may need to remove locks from the bathroom door, or replace them with locks that can be opened from the outside. Someone with dementia may lock himself or herself in and panic, or they may go into the bathroom and then forget why they went in.

•  Don't forget your own safety. If you have to help the person get into the bath, make sure you don't strain your back. If this is becoming a problem, talk to an occupational therapist about equipment to help you (see 'Aids and equipment', below).

 

Aids and equipment

If washing is becoming difficult, you might find it useful to install some equipment such as bars and handrails. This equipment can help the person feel more independent and more in control of their situation, and can make washing and bathing easier. Information about this sort of equipment is available from an occupational therapist, who you can contact through your DOCTOR or  nurse. The service is free of charge.

 

An occupational therapist may suggest some of the following pieces of equipment:

•  grab rails to help with getting in and out of the bath

•  handrails, attached to the wall near the shower, washbasin or toilet

•  non-slip mats in the bath or shower

•  seats to go in the bath or shower

•  raised toilet seats.

Other aids, such as sensors that detect when bathwater is too hot, or overflows, are also available.

 

Washing hair

Most people like having their hair washed regularly. Many people enjoy the feeling of having their hair washed, and feel better when it is done. However, some people don't enjoy it at all. If this is the case, you need to balance the advantages of clean hair against the disadvantages of creating tension between you and the person you are caring for.

 

Tips: washing someone's hair

•  If you are washing the person's hair yourself, a hand-held shower may work best.

•  If the person prefers to have their hair washed by a hairdresser, either arrange regular trips to the hairdresser, or find a hairdresser who will come to the house.

 

Using the toilet

Try to make sure that the person wipes themselves properly after using the toilet, or help them to do so if this feels appropriate. This will depend on your relationship.

 

Tips: toilet hygiene

•  Wiping from front to back, rather than back to front, helps to prevent infection.

•  Moist toilet tissues, obtainable from any chemist, can clean more effectively than dry toilet paper, and can be useful to keep around in case the person has an accident.

 

When someone is reluctant to wash

If the person with dementia doesn't want to wash, try to remain calm and find a way to cope that does not involve confrontation. It's important to remember that everyone has different standards of hygiene. You may prefer to bathe every day, but if someone doesn't wash every day it's not the end of the world. Think about what the person's routine was like before they had dementia, and encourage them to maintain that level of cleanliness.

 

Tips: encouraging someone to wash

•  Try giving gentle reminders about using the toilet or washing.

•  Think about the timing of your request, or the way you phrase it. A person may adamantly refuse to wash when you suggest they should, but may decide to wash themselves later in the day. This doesn't necessarily mean that they are being difficult − it may relate to the damage that has been caused to the nerve pathways in the brain.

•  You may find it easier to reason with the person that they should wash if they are going out, or if they are expecting visitors.

•  If bathing or showering causes the person distress, a strip wash may be sufficient.

•  If the person is reluctant to change their clothing, try removing dirty clothes and substituting clean ones at bedtime, or after a bath. This can help prevent arguments.

 

The bottom line

Washing is a matter of personal choice. Today, most people in the UK bathe or shower daily, but 30 years ago it was normal to have a bath only twice a week. However, washing is not just about smelling fresh and looking well kept. It also helps prevent ill health. Not washing enough can lead to infections and skin complaints. If the person you are caring for doesn't choose to wash as often as you would wash yourself, that's not necessarily something to worry about. But there are some minimum requirements where you will need to put your foot down.

•  Make sure the person washes their hands before eating or handling food and after using the toilet.

•  Bottoms and genitals should be washed every day to prevent infection.

•  Faces should be washed every day to keep the skin clear.

•  The person should have a full wash (for example, a bath, shower or strip wash) at least twice a week.

•  Teeth need to be cleaned twice a day to prevent cavities.

 

Tips: helping someone wash

•  Try to make the experience as pleasant and relaxed as possible. Nice-smelling bubble bath or relaxing music can make wash time feel like a treat rather than a chore.

•  Be sensitive to the person's preferences, and try to work out which approaches are most likely to be effective.

•  Use the time to have a chat, as well as to explain what you are doing.

•  If the person finds the experience difficult, try to imagine how you would feel in their situation.

•  Making a joke about any muddles or awkwardness may help you both feel better.

•  Try to be flexible. You may find that different approaches work at different times, depending on the person's mood and the severity of their dementia.

•  Being organized can help reduce stress. Try to make sure you have everything you need ready to hand before you start.

Make sure the person is thoroughly dried - especially in the skin folds. This will prevent the skin from becoming chafed. While the person is undressed, check for any red or sore areas. If you notice anything you're concerned about, mention it to your  nurse or DOCTOR.


Nutrition

Dementia can greatly affect a person's relationship to food and eating. The behavioural, emotional and physical changes that take place as dementia progresses can all have an impact upon a person's eating habits and on their intake of food and drink.

It is important to do what you can to make sure that the person you are caring for enjoys their food and eats a healthy, balanced diet. As dementia progresses eating can become difficult for some people. However, by making a few changes you can help keep mealtimes as enjoyable and stress free as possible.

 

Eating

It is important to do what you can to make sure the person you are caring for enjoys their food and eats a healthy, balanced diet. As dementia progresses, eating can become difficult for some people. However, by making a few changes you can help keep mealtimes as enjoyable and stress-free as possible.

Problems with eating are common in dementia. At times, the person may refuse to open their mouth, or may need to be reminded to do so. Sometimes, they may accept food but will not swallow it, or they may accept it but then spit it out. At other times, they may resist the person trying to feed them, and push them away, or they may throw their food about or turn their head away. This can be exasperating or distressing for the person trying to feed them, but it is important not to take it personally. These reactions do not mean that the person is deliberately being difficult − the behaviour is more likely due to discomfort in the mouth, or incorrect signals being received by the brain.

 

Helping someone with dementia to eat: three key principles

•  Keep calm− A calm, regular routine is reassuring for a person with dementia. Meals should be relaxed, unhurried occasions, so allow plenty of time and make sure that there are no distractions such as television or radio. Never try to feed a person when they are agitated, or if they are drowsy or lying down, as there is a danger of choking.

•  Be flexible − As the dementia progresses, changes in eating habits are likely to take place. Accept that mealtimes might become very different to how they used to be, or to how you would like them to be.

•  Help the person to feel involved− If you have to feed the person, try putting the food into their hand and guiding it to their mouth, so that you involve them in the process of eating.

 

A healthy diet

It is important to encourage the person to eat a balanced diet. If they are lacking certain essential nutrients, they may become ill or more confused. The guidelines for a healthy diet are:

•  Enjoy your food.

•  Eat a variety of foods.

•  Eat the right amount to be a healthy weight.

•  Eat plenty of foods rich in starch and fibre.

•  Eat plenty of fruit and vegetables (at least five portions a day).

•  Don't eat too many foods that contain a lot of fat.

•  Don't have sugary foods and drinks too often.

•  Don't eat too many foods high in salt, and cut down on the amount of salt added in cooking and at the table.

 

Dementia affects people in different ways but some problems, such as appetite loss and overeating, are particularly common. There are many ways to help overcome these problems and ensure that the person eats a healthy, balanced diet. We now look at each of these in turn.

 

Appetite loss

There are several reasons why a person with dementia may have a poor appetite or seem uninterested in eating. These include:

•  Depression− Loss of appetite can be a sign of depression. Depression is very common; when someone becomes aware that they are in the early stages of dementia, feelings of despair and hopelessness are understandable. There are effective treatments for depression, including medication and other therapies. If you suspect that this is the problem, consult your DOCTOR. When the depression lifts, the person's appetite should return.

•  Physical discomfort− The person may be having problems with badly fitting dentures or sore gums, both of which will make eating uncomfortable. If you think this might be a problem, ask your dentist to check.

•  Lack of exercise − If the person is not very active during the day, they may not feel hungry. Try to encourage them to move around during the day and take part in physical activities or exercise.

•  Damage to the brain− In the later stages of dementia, the person may no longer be able to understand that the food in front of them is there to be eaten, even if they are hungry. This is because the nerve pathways in the brain are damaged, so the message is not getting through. You may need to keep reminding them to eat, or guide the food to their mouth.

•  Difficulties with chewing and swallowing− Chewing and swallowing can become difficult as dementia advances. If this seems to be the case, ask your DOCTOR to put you in touch with a speech and language therapist, who may be able to offer some advice.

•  Constipation− This is a common problem, especially in the later stages of dementia, and can make the person with dementia feel bloated and confused. Try to prevent constipation by making sure the person eats a fibre-rich diet and drinks plenty of fluids. If constipation becomes a severe problem, consult your district nurse or DOCTOR.

 

Other things to look out for include:

Weight loss− In the later stages of dementia, weight loss is a common symptom, but we do not yet know why. If the person you are caring for is losing weight but is not at this advanced stage, ask their DOCTOR for a referral to a dietician. If they are very restless and physically agitated they may be using more energy than the calories they are consuming, or there may be a medical problem.

•  Appetite loss in those living alone − If the person is living on their own, you may find that they are not eating any food that you have provided, or they may start hiding food. Meals on wheels may no longer be helpful because they forget to eat the meal delivered. These are signs that the person needs more help. It is possible to arrange for home carers to visit the person at mealtimes and either prepare a meal for them, or stay with them while they eat. Contact your local social services department for more information.

 

Overeating

Sometimes a person with dementia may eat more food than they need. This can be due to changes in the brain caused by the condition, and is often only a temporary phase. Alternatively, it may be caused by memory loss. The person may completely forget that they have eaten − even if they have just done so.

If a person is eating excessive amounts, try to limit their food intake to prevent them from feeling uncomfortable after eating, or becoming overweight.

 

Sometimes a person with dementia will feel compelled to search out and consume any type of food. In addition to the problem of overeating, this type of behaviour can cause the person to eat or drink unsuitable, or even dangerous, substances.

If you are trying to help prevent someone from overeating, try the following suggestions:

•  Put anything that you don't want the person to consume out of sight or out of reach.

•  Try to distract their attention, or find a satisfying activity, as a substitute for eating.

•  If the person constantly seeks out food, try to provide healthy snacks such as fresh or dried fruit, or raw vegetables such as carrot sticks.

 

During the later stages of dementia, some people develop a taste for specific foods. Foods with strong flavours are surprisingly popular at this stage. This is due to the physical damage to the brain, and is not harmful. So long as it's healthy, try to give the person the food they want to eat. If you are worried about the nutrition of the person you are caring for, talk to your DOCTOR, who may decide to prescribe vitamins or other dietary supplements.

 

Tips: helping a person with dementia to eat well

•  Don't feel you need to prepare elaborate meals − it is probably better to devote your energy to ensuring that the person eats and enjoys their food.

•  If the person is restless or has a poor appetite, they may find frequent small meals or nutritious snacks more tempting than large meals.

•  Dementia affects people's sense of taste. You may need to offer sauces or seasoning that the person did not use before to enhance the flavour of their food.

•  However, make sure that the person does not use seasonings such as salt or chilli excessively.

•   Make sure that food and drinks are not too hot to serve− people with dementia may lose the ability to judge temperature.

 

Encourage the person to drink enough liquid each day. Too little liquid can lead to dehydration, which can make the person more confused. A rough guide is at least eight cups of liquid a day.


Maintaining quality of life

There are many ways in which you can help to improve the person with dementia's quality of life.

For example, you can help them to cope with their memory problems, to make the best use of their skills and abilities, and to communicate with others in whatever way seems appropriate as their condition changes.

 

Coping with memory loss

Memory loss is a distressing part of dementia, both for the person with dementia and for those around them. However, there is plenty that can be done to help manage memory problems, to enable people to retain their confidence and independence for as long as possible.

 

When is memory loss associated with dementia?

Memory loss is often one of the first signs of dementia. Initially, memory lapses may be mistaken for the normal forgetfulness that often increases as people grow older or when they become very stressed. However, in someone with dementia it will gradually become apparent that the memory problems are becoming more severe and persistent. They will also be accompanied by changes in thinking and feeling that make it more difficult to cope with everyday life.

With memory, as with any other aspect of dementia, everyone is different. Memory loss can work in various ways, and each person with dementia will be affected slightly differently. For example, some people with dementia retain certain skills until quite a late stage, and may recall a surprising range of facts or experiences, even though they are very forgetful in other areas.

 

Supporting someone with memory loss

If the person's forgetfulness could put them at risk in any way, it is important to take certain precautions. These might include leaving a reminder by the door so that they don't forget their keys when they go out, or fitting a device that cuts off the gas supply if they put a pan on the stove and then forget about it. However, on the whole, it's important to help a person continue to do things for themselves and to remain independent for as long as possible. Those around the person with memory loss should be flexible and patient, and encourage them to remember what they can without making them feel pressured − using frequent reminders and doing things with, rather than for, them.

 

Although memory loss affects each person differently, there are some characteristics that are relatively common in people with dementia. It can be helpful to understand how memory loss works, and to learn about some of the ways that professionals and carers manage the situation. There are four common areas in which people with memory loss often experience difficulty:

•  remembering the distant past

•  taking in new information

•  remembering people

•  separating fact from fiction.

 

Coping with memories of the distant past

Most people with dementia remember the distant past more clearly than recent events. They will often have difficulty remembering what happened a few moments ago, but can recall minute details of life when they were much younger. However, with time, even these long-term memories will eventually decline.

People with dementia are often understandably anxious about forgetting their past − particularly in the early stages of the condition. Those around them should try to provide opportunities to share memories by looking at photographs and souvenirs together. This can help jog the person's memory, and may help them feel more calm and in control. Talking about the past can be enjoyable for the person with dementia and those around them, and may help the person retain their sense of who they are.

Sometimes, a person with dementia may seem to be living in the past and insist, for example, that they have to wait for their mother to take them to school. If this happens, those around them should try to relate to what the person is remembering or feeling, rather than contradicting what they say.

Not all memories are happy ones. If the person seems very upset by certain memories from the past, they will need the chance to express their feelings, and to feel that they are understood. If they seem sad, it can help to encourage them to talk about it and comfort them, rather than changing the subject.

 

Taking in new information

People with memory problems often find it very hard to absorb and remember new information. In some people with dementia, the part of the brain that allows new information to be processed may be damaged, so if they deny having heard the information before, they may well be telling the truth. Their brain has not retained what it has been given, leaving them feeling that this is the first time they have heard it.

The following tips will help:

•  Keep information simple, and repeat it frequently.

•  Break new activities down into small steps.

•  Try to begin new routines or regimes early on in the dementia, while the person's memory is still relatively intact.

 

Recognizing people

Someone with dementia may eventually lose the ability to recognise people, places or things because their brain can no longer remember things or put information together. They may even fail to recognise their own reflection in a mirror and think it is someone else, or worry that a relative or close friend is an intruder in their home.

This can be distressing for the person, but it can also be upsetting for those around them. If this happens, try to find tactful ways to give the person reminders or explanations. This will reassure them, and will help them to continue to make some sense of their environment and the people around them. If a person's friends or family feel that the person no longer recognises them and they find this very distressing, it's important that they talk these feelings through with someone they trust.

 

Fact versus fiction

As dementia progresses, the person may sometimes confuse fact with things they have imagined. If this happens, try to focus on the feelings they are trying to express, and relate to them, rather than correcting the detail. For example, if they think their bag has been stolen when actually they have just put it somewhere and forgotten, this may indicate that they are feeling insecure and that they feel the world is a threatening place. The feeling is true (a sense of feeling threatened) even if the details (the bag being stolen) are not.

No one likes being corrected all the time − at best it is irritating, and at worst it can severely undermine a person's confidence. If we continually correct the small details of what a person with dementia is saying, they may become reluctant to join in conversation or activities. For this reason, it is important to focus on the emotions behind the statement rather than the facts or details.

There may be some instances where it is important to contradict or correct what the person with dementia is saying − for example, if they incorrectly accuse someone of something. In this case, it must be done sensitively, in a way that saves face and does not seem critical.

 

Tips: practical steps to help the memory

Avoid unnecessary stress

If someone is tired, unwell, anxious or depressed, they will find it even more difficult to remember things. Their memory problems will also become more apparent if they try to do more than one thing at a time, or if they are distracted by noise or bustle.

Help keep the person's life relatively stress-free − for example:

•  Make sure they have plenty of support.

•  Help them to concentrate on one thing at a time.

•  Try to make sure that there are no distractions, such as background noise or lots of people.

•  Provide verbal cues rather than asking questions that might make them feel 'put on the spot'. For example, say: 'Look − here's David, your nephew, who has come to see you', rather than 'Do you remember who this is?'

•  Make sure they get enough exercise, which helps reduce pent-up tension.

If you think that the person seems highly anxious or depressed, consult the DOCTOR.

 

Put a regular routine in place

Although variety and stimulation are important, too many changes can be confusing for a person with dementia. Setting up a regular routine will help someone feel more secure, and will make it easier to remember what usually happens during the day. It is also a good idea to leave things in the same place, so that they can be found more easily.

People can begin to lose their sense of time quite early on in dementia. If they can't remember what they have done, or what they are going to do that day, they may find it hard to judge how much time has passed or to anticipate what will happen next. Keeping to a regular routine can help with this difficulty, as will tactful reminders of the day and time, and about what is going to happen next.

 

Make the most of memory aids

In the early stages of dementia, memory aids such as lists, diaries and clear, written instructions can help jog the person's memory if they are willing and able to make use of them. As the dementia progresses, the person may become less able to understand what the aids are for.

 

Communicating

We all need to communicate with other people. Communicating our needs, wishes and feelings is vital − not only to improve our quality of life, but also to preserve our sense of identity. If you need to communicate with someone with dementia, it's important to encourage the person to do so in whichever way works best for them.

We tend to think of communication as talking, but in fact it consists of much more than that. As much as 90 per cent of our communication takes place through non-verbal communication, such as gestures, facial expressions and touch.

Non-verbal communication is particularly important for a person with dementia who is losing their language skills. What is more, when a person with dementia behaves in ways that cause problems for those caring for them, it is important to realise that they may be trying to communicate something.

 

Dementia and language

An early sign that someone's language is being affected by dementia is that they can't find the right words − particularly the names of objects. They may substitute an incorrect word, or they may not find any word at all.

There may come a time when the person can hardly communicate through language at all. Not only will they be unable to find the words of objects: they may even forget the names of friends and family. People with dementia often confuse the generations − mistaking their wife for their mother, for example. This may be very distressing for their loved ones, but it's a natural aspect of their memory loss.

The person with dementia may be trying to interpret a world that no longer makes sense to them because their brain is interpreting information incorrectly. Sometimes the person with dementia and those around them will misinterpret each other's attempts at communication. These misunderstandings can be difficult, and may require some support.

Difficulties with communication can be upsetting and frustrating for the person with dementia and for those around them, but there are lots of ways to help make sure that you understand each other.

 

Tips: communicating with someone with dementia

General advice

•  Listen carefully to what the person has to say.

•  Make sure you have their full attention before you speak.

•  Pay attention to body language.

•  Speak clearly.

•  Think about how things appear in the reality of the person with dementia.

•  Consider whether any other factors are affecting their communication.

•  Use physical contact to reassure the person.

•  Show respect.

 

Listening skills

•  Try to listen carefully to what the person is saying, and give them plenty of encouragement.

•  If they have difficulty finding the right word or finishing a sentence, ask them to explain in a different way. Listen out for clues.

•  If you find their speech hard to understand, use what you know about them to interpret what they might be trying to say. But always check back with them to see if you are right − it's infuriating to have your sentence finished incorrectly by someone else!

•  If the person is feeling sad, let them express their feelings without trying to 'jolly them along'. Sometimes the best thing to do is to just listen, and show that you care.

 

Attracting the person's attention

•  Try to catch and hold the attention of the person before you start to communicate.

•  Make sure they can see you clearly.

•  Make eye contact. This will help them focus on you.

•  Try to minimise competing noises, such as the radio, TV, or other people's conversation.

 

Using body language

•   A person with dementia will read your body language. Agitated movements or a tense facial expression may upset them, and can make communication more difficult.

•   Be calm and still while you communicate. This shows the person that you are giving them your full attention, and that you have time for them.

•   Never stand over someone to communicate: it can feel intimidating. Instead, drop below their eye level. This will help them feel more in control of the situation.

•   Standing too close to the person can also feel intimidating, so always respect their personal space.

•   If words fail the person, pick up cues from their body language. The expression on their face, and the way they hold themselves and move about, can give you clear signals about how they are feeling.

 

Speaking clearly

•  As the dementia progresses, the person will become less able to start a conversation, so you may have to start taking the initiative.

•  Speak clearly and calmly. Avoid speaking sharply or raising your voice, as this may distress the person even if they can't follow the sense of your words.

•   Use simple, short sentences.

•       Processing information will take the person longer than it used to, so allow them enough time. If you try to hurry them, they may feel pressured.

•       Avoid asking direct questions. People with dementia can become frustrated if they can't find the answer, and they may respond with irritation or even aggression. If you have to, ask questions one at a time, and phrase them in a way that allows for a 'yes' or 'no' answer.

•       Try not to ask the person to make complicated decisions. Too many choices can be confusing and frustrating.

•       If the person doesn't understand what you are saying, try getting the message across in a different way rather than simply repeating the same thing.

•       Humour can help to bring you closer together, and is a great pressure valve. Try to laugh together about misunderstandings and mistakes − it can help.

Whose reality?

•       As dementia progresses, fact and fantasy can become confused. If the person says something you know isn't true, try to find ways around the situation rather than responding with a flat contradiction.

•       If the person says 'We must leave now − Mother is waiting for me', you might reply, 'Your mother used to wait for you, didn't she?'

•       Always avoid making the person with dementia feel foolish in front of other people.

Physical contact

•       Even when conversation becomes more difficult, being warm or affectionate can help carers to remain close to their loved ones, or for the person with dementia to feel supported.

•       Communicate your care and affection by the tone of your voice and the touch of your hand.

•       Don't underestimate the reassurance you can give by holding or patting the person's hand or putting your arm around them, if it feels right.

Show respect

•       Make sure no one speaks down to the person with dementia or treats them like a child, even if they don't seem to understand what people say. No one likes being patronised.

•       Try to include the person in conversations with others. You may find this easier if you adapt the way you say things slightly. Being included in social groups can help a person with dementia to preserve their fragile sense of their own identity. It also helps to protect them from overwhelming feelings of exclusion and isolation.

•       If you are getting little response from the person, it can be very tempting to speak about them as if they weren't there. But disregarding them in this way can make them feel very cut off, frustrated and sad.

Other causes of communication difficulty

It is important to bear in mind that communication can be affected by other factors in addition to dementia − for example:

•       pain, discomfort, illness or the side-effects of medication. If you suspect this might be happening, talk to the person's DOCTOR at once

problems with sight, hearing or ill-fitting dentures. Make sure the person's glasses are the correct prescription, that their hearing aids are working properly, and that their dentures fit well and are comfortable.

 

Maintaining everyday skills

It is easy to assume that people with dementia inevitably lose all their skills and become incapable of carrying out everyday activities. With time, dementia will affect a person's skills but there are plenty of ways to make sure they stay active for as long as possible. This factsheet suggests a range of ways to help someone with dementia to feel good about themselves and continue to take part in everyday activities.

Help the person maintain their independence

People with dementia need to continue carrying out as many of their previous activities as independently as possible, in order to retain their skills. Doing things for themselves will enhance their physical, social and emotional well-being, through the preservation of their dignity, confidence and self-esteem. 

If you spend time with someone with dementia, you need to support and encourage them to do whatever they can for themselves, and to offer only as much help as they need. This is not always easy - not least because it may be frustrating watching something being done slowly when you could do it more quickly and easily yourself. But even if the person is struggling with a task, try to avoid the temptation to take over. If you do, they may lose confidence and are likely to cope less well.

Tips: helping out

•       If you do need to offer help, try to do things with, rather than for, the person. This will help them feel more involved.

•       Always try to focus on what the person can do rather than what they can't. 

•       Remember that they may have a short attention span and may find it hard to remember or concentrate on things. 

•       Try to be patient, and allow plenty of time. 

•       Give plenty of praise and encouragement. 

•       If you feel yourself becoming irritated or frustrated, think how the person might also be feeling. Take time out to give yourself, and the person, some time alone. If you feel that you both need some time apart, make sure that the person is safe, then go into another room for a few minutes. Remember, it is important to look after yourself - for more advice, see Factsheet 523, Carers: looking after yourself.

Offer help sensitively

As the dementia progresses, the person may find certain tasks increasingly difficult, while others may remain manageable for much longer. By helping sensitively, you can offer support while enabling them to do what they can for themselves. You will need to adjust the level of help you offer, so that they can continue to make the best use of their remaining skills.

Tips

•       Try breaking the task down into sections. For example, the person may find it easier to continue dressing themselves if you put their clothes out for them in the order that they need to put them on. Or you could pass the next garment to them, holding it out ready for them to grasp at the right place, or encourage them to put their vest on over their head before you straighten it down for them.  

•       Even if the person can't complete a full task, achieving one or two steps of it - particularly the final step - can give them a sense of achievement.

•       Make sure that any reminders or instructions are simple. Use short sentences, with gestures and body language to add meaning.

•       Be tactful. Try to imagine that you are the person receiving help, and speak in a way that you would find helpful if you were in their position. 

•       Try doing things together, such as folding clothes or drying dishes. 

•       Try integrating opportunities to do things into the daily routine.

•       Make sure that the person doesn't feel that they are being supervised or criticised in any way. This means checking your tone of voice as well as the words that you use.

•       When the dementia is at a more advanced stage, try pointing, demonstrating, or guiding an action rather than giving a verbal explanation. For example, the person may be able to brush their own hair if you hand them the brush and start by gently guiding their hand. Use your voice to make reassuring and encouraging sounds rather than using actual words.

Make sure the person feels safe

Feeling safe is essential for our sense of well-being, but for a person with dementia the world may feel like an unsafe place for much of the time. Most of us can only imagine how frightening it must be to experience the world in this way.

Tips

•       Respond to how the person is feeling at that very moment.

•       Be reassuring, and avoid confronting them with distressing reminders or tasks.

•       Remember, the more you can help the person not to feel anxious and stressed, the more likely they are to be able to use their skills to the best advantage.

Make sure they have things to do

We all need to feel useful. This is as true for people with dementia as it is for anyone else. Encouraging the person to carry out activities around the home or garden is a way of enabling them to feel needed while maintaining their everyday skills. In the home, they may like to carry out simple tasks, such as dusting, polishing, folding clothes, laying and clearing tables, drying dishes and sorting cutlery. Work in the garden might include digging, watering, raking or sweeping leaves.

Leisure activities are equally important. Try to help the person maintain skills related to their past interests and habits. For example, if they used to enjoy carpentry, they may get satisfaction from sanding a piece of wood. If they enjoyed cooking, they may be able to advise you on a recipe or help prepare a particular dish by peeling the vegetables. Encourage the person to go outdoors and possibly on accompanied outings to the shops, garden centre and other public places. Sitting and chatting, watching others and listening to music all count as 'activities'. Opportunities to engage with children and animals can bring lots of pleasure too.

Tips

•       Remember that it's more important that the person feels useful than that they complete the task perfectly. 

•       If you do have to redo a task that they have done, be very tactful, or try to do it without their noticing. 

•       Always thank the person for their help.

Use memory aids

You can use memory aids and other reminders to help the person use their skills for longer. These may be of most help in the early stages of dementia when the person is better able to understand the message and to act upon it.

Ideas include:

•       labelling cupboards and drawers, perhaps using pictures rather than words - for example, a photo of a cup and jar of coffee

•       a large calendar showing the day, month and year

•       a noticeboard for messages 

•       notes stuck by the front door.

Help the person relax

A person will be at their best if they are relaxed. There are plenty of things you can do to help the person feel calm and secure.

Tips

•       Ensure that the person is as close as possible to people and things that they recognise, and that they enjoy being with. 

•       Make sure the atmosphere is relaxed and uncritical. 

•       Try to ensure familiar surroundings and a regular routine, as this will be reassuring. 

•       Try to avoid too many conflicting sounds or large numbers of people, as this can add to a person's confusion. If possible, turn off the radio or the television. If the person needs to concentrate on something in particular, take them to a quiet place. 

•       If the person becomes upset or embarrassed by their declining abilities or clumsiness, give them plenty of reassurance, and when things do go wrong, be tactful and encouraging. Having a good laugh about it together often helps.