Your health and wellbeing as a carer for a person with dementia

Caring for a person with dementia can have a big impact on your mental and physical health and your overall wellbeing. That’s why it’s important that you look after yourself – both for your own sake and so you can continue to care for the person with dementia. Carers often feel a wide range of emotions. Try to understand why you feel the way you do and to accept your emotions as a normal reaction to what may be a very difficult situation.

Managing your feelings

Remember that you’re not alone in feeling the way you do. If you have any negative feelings about the person you are supporting or the situation, it does not mean that you’re a bad person. Being aware of your feelings can make it easier to deal with them. For example if you feel frustrated or angry, try to work out why. Are you trying to do too much? Are you not getting the help you need? If you understand why you feel the way you do it will help you make decisions about what is right for you and the person you are caring for.

Be realistic and kind to yourself

Remember you can only do so much. Everyone who cares for a person with dementia will need help at some stage. Focus on what you can do and try to accept that you may need help with some things.

Try not to compare yourself or your situation with other carers. You may think they are coping much better than you. However everyone’s situation will be different and everyone faces their own challenges. You may struggle with things other people seem to find easy but they may struggle to do things that you find easy.

Set out your priorities

Carers often need to do many different things at once. This can be difficult to manage and it can leave you feeling exhausted – both physically and mentally.

Many carers feel torn between their different responsibilities. You might be trying to care for the person with dementia as well as looking after a household, caring for children or going to work. As much as you may want to manage everything, it will not always be possible. It can also be difficult if other people try to help but give you advice that may not apply to your specific situation.

You can’t do everything on your own. You also won’t be able to please everyone. Work out which things you really need to do and which are less important. Look for tasks that other people may be able to help you with, to take some pressure off you. Don’t be hard on yourself about the things you can’t manage or feel guilty about asking your family members or friends for help.

Remember the positives

While you will have challenges to deal with, also try to focus on some of the positive things about caring for and supporting the person with dementia.
Take strength from your commitment to them and your fondness for them. Think about your relationship with the person and the fact that you’re helping them enormously, even if they may not always seem to know or appreciate it. It can sometimes be hard to see the positive things you are achieving. Writing things down can help – even small things like a joke you shared with the person you’re caring for.

When you’re having a difficult day, thinking about positive times you’ve shared can remind you that there are still some better times and about the good that you are doing for the person.

Talk to other people

Talking about your emotions is often the first step to understanding and dealing with them. It can also help if you talk to the people around you about dementia and your experiences. Tell them what life is like for you and the person you care for. This may help them understand how much you do for the person you are supporting and what help and support you need.

This might help you feel less isolated and stressed. It can also help you put things in perspective. If you don’t talk about your feelings or take time to address them, it is likely to make things worse. This won’t be good for you and it will also have an impact on the person you’re caring for. If you feel like you are struggling, speak to someone as soon as possible.

Talking to and involving your family and friends in your caring role may help you to have breaks and reduce some of your stress. Some carers find that their friends and family members can provide a good range of support.
Even if they can’t help with day-to-day care, they may be able to look after the person you are supporting for a short time so that you can have a break. Or they might be able to support you in other ways, such as helping you sort out finances.

See the section 'Getting help and support’ for more information on talking to other people who can provide support.

Asking for help

Don’t be afraid to ask for help and support if you need it. Sometimes people don’t offer help because they don’t know what they can do. Try suggesting specific ways that other people can help. If you’ve previously said you can manage without someone’s help, they may not think to offer again, even when your situation changes. Let people know how valuable their support is and how much it helps you.

If you don’t have friends or family members who can help, or if you need a type of support they can’t provide, a voluntary organisation or your local authority might be able to help you instead. Find out whether there are services in your local area that can help you or the person with dementia.
For more information see the section ‘Getting help and support’ or call Alzheimer’s Society on 0333 150 3456.

Dealing with difficult emotions

One of the most difficult things about caring for a person with dementia can be the range of emotions you experience. You may feel frustrated, exhausted or ‘burnt out’. You may be angry and wonder, ‘Why me?’ You might also feel isolated and cut off from the world. It is common for a carer to feel lonely, especially as your relationship with the person with dementia changes. There may be times when you worry that you are only caring for them out of a sense of duty. Or you may feel you no longer love or even like the person you are caring for. You might also feel grief – like you are losing the person you once knew.

Everyone will experience caring in their own way. There may be days when you feel you can cope well and other days when you feel that you can’t. There may be some parts of caring that you find easy to manage but other things that you find difficult. This can change from day to day, which can also be very challenging.

These are all very common reactions to caring for a person with dementia. Many other carers will be feeling the same emotions and it’s very important not to be ashamed about how you feel.

It is also important to learn to deal with these feelings because they can have a negative impact on many parts of your life. For example they can affect your health and wellbeing. They can also have an impact on the person you are caring for and your family members. See the section ‘Getting help and support’ for details of support that can help you deal with difficult emotions.

Feeling guilty

Some emotions you may experience will be normal responses to the  situation, such as frustration. Other emotions can be more difficult to deal with and could leave you feeling powerless or ‘stuck’.

One emotion that can be particularly hard to deal with is guilt. You may feel guilty for a number of reasons. For example:

• feeling guilty about how you feel – such as angry or frustrated with the person you are caring for
• feeling that you are not looking after the person well enough or that you’re doing things ‘wrong’
• feeling that you are not coping as well as other carers
• feeling that you’ve had enough of your role as a carer
• feeling guilty for resenting the impact caring has on your life and that you never ‘chose to do it’
• feeling guilty about not having been more patient with the person when their symptoms were developing or about being impatient with them now
• feeling guilty about not making time for yourself, or spending time with your other family members, including children, or friends
• feeling guilty about difficult decisions you make, such as moving the person with dementia into a care home or arranging for them to be cared for by someone else, such as another family member or a paid carer.

You can’t stop yourself from feeling these things but you can learn how to respond to these feelings. For example, remember that you are managing a difficult situation and supporting a person who needs you. Nobody is perfect and everyone gets frustrated at times and makes mistakes. You are helping the person enormously by just being there and caring for them.

Dementia is a complex, unpredictable and progressive condition, so caring for a person with dementia is often unlike caring for someone with any other condition.

It is important that you seek support before your feelings reach a crisis point. For example you can call Alzheimer’s Society on 0333 150 3456. For suggestions about support that you may find useful see the section ‘Getting help and support’.

Staying physically healthy

Staying physically healthy is an important part of maintaining your mental health too. It’s not always easy but try to take care of yourself in the following ways to help you stay healthy.

• Eat a well-balanced diet, with at least five portions of fruit and vegetables every day.
• Exercise regularly. This is again good for both your physical and mental health. You could go for a walk or join an exercise class. Or you could just try to be more physically active during your day.
• Try to get enough sleep. This is very important because sleep helps your brain and your body recover from tiredness. It can be difficult to sleep well if the person you are caring for wakes or gets up at night. If this happens you might find it easier to sleep when the person you care for is sleeping – for example, if they take daytime naps. If you can’t get enough sleep, talk to your GP. They may be able to suggest services or techniques to help you, including counselling.
• Stay in touch with your friends or other carers as much as possible – ideally face to face. Seeing friends or speaking to people who are in a similar situation is very important for your mental health and your overall ‘resilience’ as a carer.
• If you can, spend time enjoying your hobbies and interests. If you find this difficult because of your caring commitments, try to include enjoyable activities in your daily life. For example listening to your favourite music while you are doing household chores or driving to appointments.
• See your GP regularly, so that they can check your general health.

If you are struggling to cope or you feel depressed, anxious or stressed, it is especially important that you talk to your GP. There is help available, such as counselling or extra support services. Speaking to friends or family members can also help. For more information see the section ‘Getting help and support’.

Taking regular breaks

It can be difficult to find time for yourself when you are caring for a person with dementia. You might also feel guilty about wanting to spend time alone. However taking regular breaks from caring is important for your own wellbeing and you will be able to cope better if you take breaks from caring and make time for yourself. Socialising is also very important for your overall wellbeing.

When you do get time to yourself you could use it to catch up on tasks like housework or managing your finances. Or you may want to have some ‘time out’, such as meeting a friend for coffee, enjoying a hobby, or doing something else for yourself.  Also try to find time to reflect and relax.

Many carers find that making time to do things they enjoy helps them with their caring role. By taking regular breaks you may find you are better able to support the person you’re caring for. Having time apart can also be good for both you and the person you are caring for. It can help to ease any tensions or frustrations you have. You don’t have to take long breaks from caring. Having a short time to yourself could make a lot of difference.

Try to make time to do something you enjoy every day, whether it is on your own or with the person you are caring for. This could also give the person with dementia a chance to experience new things and to have a change from their routine.

So that you can take a break, ask if someone you know can spend a few hours with the person you are caring for, such as a friend or family member. 

Or your local authority may be able to help. For example it might have a ‘sitting service’ or a befriending service. Or it might be able to provide care so that you can take a break. This is called ‘respite care’ or sometimes ‘replacement care’. It could be for an hour or two, or for days or weeks. For more information see our pages on 'Replacement care (respite care) in England', 'Respite care in Wales', and 'Respite care in Northern Ireland'.

Other organisations or charities in your local area may also offer respite care. To find support services in your area for people with dementia and their carers you can use our online Dementia Directory.

Remember that you are managing a difficult situation and supporting a person who needs you. Nobody is perfect and everyone gets frustrated at times or makes mistakes. You are helping the person enormously by just being there and caring for them. Dementia is a complex, unpredictable and progressive condition, so caring for a person with dementia is often unlike caring for someone with any other condition.

Coping with changes

As dementia progresses a person’s needs and abilities will change. You’ll need to adapt and learn how to cope with these changes. It may sometimes feel like you’re starting again with learning how to support the person you are caring for. It can also be very difficult to see them struggle with things they used to be able to do. Try to accept that the changes are happening and focus on what the person can still do. Support them to do those things. For advice about ways to support and communicate with a person with dementia see our pages 'Communicating', and 'Understanding and supporting a person with dementia'.

Some of the changes you will need to cope with will be small. However, in the future you may need to make bigger and more difficult decisions about changes. This could include choosing where the person lives. For more  information about this see the section ‘Caring as dementia progresses’.