Dementia /Alzheimer's disease Info

Carers: looking after yourself


When you're caring for someone with dementia, it can be all too easy to ignore your own needs and to forget that you matter too. This factsheet highlights the importance of looking after your own health and well-being to help you cope, and shows where support is available.

Time to yourself

Make sure you have some regular time to relax or do something just for you.
•Put aside some time each day for yourself - have a cup of tea and read the paper, listen to some music, do the crossword or go for a short walk.
•Get out every week or so to meet a friend, have your hair done, pursue an interest or take part in local activities, for example. It is important to do something that you find enjoyable and that keeps you in contact with the outside world.
•Take regular weekends away or short breaks to recharge your batteries.

Remember, there are plenty of options to help you meet your own needs without compromising the needs of the person you're caring for.

If the person you are caring for can't be left alone, ask friends or family whether they could pop in for a short time, or whether they could come and stay with the person for a few days. Find out what support services are available in your area, such as home care, day care or respite residential care, and what they cost (see 'Getting support', below).

Your health

It is important that you look after yourself. Caring can be hard work, and you need to be healthy and happy if you are to manage it.
•Try to eat a well-balanced diet, with at least five portions of fruit and vegetables a day. This will make you feel better and give you more strength and energy.
•Taking regular exercise is vital for your health and will give you more energy. Walk in the fresh air each day if you can, or do some exercises at home. Ask your GP for advice.
•Make sure you get enough sleep. If your sleep is frequently disturbed by the person you care for, talk to your doctor, social worker or community psychiatric nurse about it.
•If you have to help the person move around, make sure you don't damage your back. Ask your GP to refer you to a community physiotherapist for advice.
•See your GP on a regular basis to check up on your own health. Make sure they are aware of any stress or problems you are experiencing.
•If you start to feel depressed, anxious or stressed, see your GP as soon as possible. There are a number of options available, and these problems are easier to tackle at an early stage.

Your financial well-being

Your legal and financial situation may be affected if you are caring for a person with dementia. There are a number of areas to think about before you make changes to your circumstances.
•Before you give up work, check whether flexible working combined with additional support from the local authority might allow you to remain in work. Carers have a right to request flexible working, and employers have to give a good business reason for refusing the request.
•If you do have to give up work, check the position with your pension.
•Make sure you and the person you are caring for are getting all the welfare benefits you are entitled to. If you have had to give up work because of caring, it is a good idea to ring a helpline or visit an advice centre to get a full benefit check (see Factsheet 413, Benefits and 'Useful organisations', below).
•Think about the best way to manage the financial affairs of the person with dementia when this becomes necessary. This may be through appointeeship or a Lasting Power of Attorney Enduring Power of Attorney and Lasting Powers of Attorney).
•Check your own position in terms of home and finances if the person you are caring for goes into long-term care or dies

Getting support

If you are caring for someone with dementia, be prepared for the fact that you will need support at some point. You will probably need a lot of different types of help and support, ranging from practical care to give you time off caring, to having someone to talk to about your feelings and concerns. Think about what help you might need, and where you can get it, before you actually need it. That way, when the time comes, you'll know where to turn.

Be explicit about what support you need, especially when you are seeking support in the form of services, and be assertive and persistent. Make it clear that you cannot continue with your caring role unless you receive the support that you need for yourself.

Support from local services

Local authorities may provide help for people with dementia and their carers. Both the person with dementia and their carer are entitled to separate assessments of their needs, and the carer can be assessed even if the person with dementia chooses not to be. If the assessment finds that the person with dementia is eligible for any services, the local authority has a duty to provide these services. Although they do not have a duty to provide services for carers (unless they themselves have a disability), in practice they will generally provide some services.

If you are being assessed as a carer, prepare for the assessment carefully. Think about your role as a carer, how you are managing, and what support you may need to continue. Think about the difficulties you have now, and those you may experience in the long term if you continue caring at the same level. These may include:
•stress, depression or anxiety
•lack of sleep
•struggling to combine work with care
•coping with challenging health problems such as incontinence
•lacking time for the other interests in your life
•fatigue due to long hours spent caring and lack of breaks
•difficulty maintaining relationships with your family and friends
•inability to plan for the future for yourself and/or the person you're caring for
•no contingency for emergencies, such as if you are ill
•if someone else could help you in the tasks that you do, would you have more time to look after the person you're caring for and/or yourself
•lack of practical skills such as being able to drive, or knowing how to lift properly.

Then, think about what would help you to cope. Solutions may include respite care, training, adaptations to the home or counselling. The local authorities may charge for some of these services, taking your income into account.

For more information, see Factsheet 418, Community care assessment.

Support from family and friends

Even though you may be coping well now, caring for a person with dementia may gradually become more demanding, both physically and emotionally. These are some ways you could relieve some of the responsibility from yourself.
•Try to involve other family members right from the start so that the responsibility doesn't all rest with you. Even if they can't offer day-to-day care, they may be able to look after the person while you have a break, or they might be able to contribute financially to the cost of care.
•Always try to accept help from friends or neighbours when they offer it. If you say you can manage, they may not think to ask again.
•Suggest ways that people can help. Perhaps ask them to stay with the person for an hour, or to go for a walk with them, so that you can get on with something else.
•Tell people that you value their support. Remind them what a difference it makes when they pop in for a chat or phone regularly to see how you are.
•Explain to your family and close friends how dementia can affect a person's behaviour. Tell them what life is like for you, and for the person you care for. This will account for apparent contradictions in the person's behaviour, and will help them understand how much you do.

Emotional support

Every carer needs support and people with whom they can discuss their feelings. You can get different types of support from:
•friends and family
•understanding professionals, such as GPs or counsellors
•local support groups where you can chat to others who have had similar experiences and who really understand what it's like. For details of local support groups, contact Alzheimer's Society, your local social services department, the Citizens Advice Bureau, or Carers UK
•online discussion forums. These can be a helpful source of out-of-hours support or practical suggestions, or simply a place to let off steam after a difficult day. Carers UK runs a number of forums, or you could try Alzheimer's Society's Talking Point, see 'Useful organisations' for details.


Your relationship with the person with dementia may change and this can have an effect on how you feel towards them. It is important to be able to talk about these feelings with someone you trust. You should not be afraid to say how you feel - it is natural to be confused, upset or even angry at times.

Coping with conflicting demands

Try to pace yourself - you can only do so much. Many carers feel torn between responsibilities - especially if they are trying to care for children, look after someone who is unwell, or go to work as well as caring for the person with dementia.
•Find out whether there are any services available for the person with dementia that could relieve you of some of the stress. Alzheimer's Society National Dementia Helpline can help you to find services in your area.
•Make sure that others close to you understand what you are going through and tell them that you need their support.

Congratulate yourself

At times, caring can feel like a thankless task. The person with dementia may no longer seem to appreciate your efforts, and others may be unaware of how much you do.
Pat yourself on the back from time to time, for:
•managing to cope, day in, day out, with a very difficult situation
•becoming ever more flexible and tolerant, and finding new strengths and skills that you did not know you possessed
•being there for someone who needs you.

Communication

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. The person may substitute an incorrect word, or 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 processing 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 communication.
•Use physical contact to reassure the person.
•Show respect and patience, remember it may take longer for the brain to process the information and respond.

Listening skills
•Try to listen carefully to what the person is saying, and give them plenty of encouragement.
•If the person has difficulty finding the right word or finishing a sentence, ask them to explain in a different way. Listen out for clues.
•If you find the speech hard to understand, use what you know about the person to interpret what they might be trying to say. But always check back 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 cause upset or distress, 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 the person to 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 enough time. If you try to hurry, 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 the person as if they weren't there. But disregarding someone 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 GP 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.

Respect

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. This factsheet looks at ways that you can help the person to feel valued and good about themselves.

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 carers, 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, like creating a life history book.

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 recognises 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 jewellery 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 criticising them.
•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, carers, and the person with dementia themselves - reacts to the experience of dementia in their own way. Dementia means different things to different people.

Helping the person feel good about themselves

There are lots of things you can do to help the person with dementia 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.
•When you are helping someone, 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.

•Give 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.
•Try not to correct what the person says to you, the accuracy of the information is not as important as what the person is trying to express.

Supporting other carers

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 emphasise 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.
•We all need to feel valued and respected and it is important for a person with dementia to feel that they still have an important part to play in life. Give encouragement and reassurance and support other family members to understand the person's needs and concerns.