Your emotional wellbeing as a carer for a person with dementia

Caring can affect every part of your life. It can also make you feel isolated and alone, which can affect your mental health. Feeling healthy and more supported can have great benefits for you and the person you care for.

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 others that you find difficult. However, if the role of carer is becoming too difficult, it’s important to ask for help and recognise that you need support too. 

Dealing with difficult emotions 

One of the most difficult things about caring for a person with dementia can be the range and strength of emotions you experience. This is completely understandable and you aren’t alone. If you ever have any negative feelings about the person you are supporting, or the situation, it does not mean you’re a bad person. This is actually very common.

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? Is lack of sleep the main problem? Are you not getting the help you need? If you can understand ‘why’ you feel the way you do, it can help you make decisions about what is right for you and the person you are caring for. 

Feeling guilty

Some emotions will be common responses to the situation, such as frustration. Other emotions can be more difficult to deal with. One emotion that can be particularly hard to deal with is guilt.  

Reasons for feeling guilty could include:

• anger or frustration with the person you are caring for 
• thinking 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 seem to be
• deciding that you have had enough of your role as a carer 
• wanting to spend time on your own
• resenting the impact caring has on your life and that you never ‘chose to do it’ 
• not having been more patient with the person when their symptoms were developing or being impatient with them now 
• not making time for yourself, or spending time with your other family members, including children, or friends 
• the difficult decisions you need to make, like moving the person with dementia into a care home or arranging for them to be cared for by someone else.

Being realistic about what you can do

You can’t help your emotions, but you can learn and practise how to respond to them. For example, it can help to remember that you are managing a difficult situation and doing the best you can to support the person. Focus on what you can do and try to accept that you may need help with some things.

Guilt, anger and frustration are common emotions felt by carers and it’s very important not to be ashamed about how you feel. Shame stops us from being honest and asking for help when we need it.

Nobody is perfect and everyone gets frustrated at times and makes mistakes. Be kind to yourself. Dementia is a complex, unpredictable and progressive condition. This means that things can change slowly over time. This can make it hard to be aware of how much relationships and feelings have changed too.

Try not to compare yourself or your situation with other carers. You may think they are coping much better than you. However, dementia affects everyone differently. 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 find things hard that you don’t.

It is important that you seek support before you reach a crisis point. For example, you can call our Dementia Support Line . 
 

Realising when you are struggling 

Carers can often reach a crisis point before they realise that they have been struggling for a while in their role. This can lead to a rapid decline in your mental and physical health. This can then have a negative effect on you and the person you are looking after. However, if you can spot early signs of struggle, this can help you to get some support as soon as possible.

Signs that you may be struggling include:

• feeling depressed or hopeless
• constantly feeling panicked and on edge
• lack of concern or strong negative feelings towards the person you are caring for
• often overcome with irritation, agitation or anger
• difficulty sleeping 
• missing appointments.

If you are struggling to cope or you feel depressed, anxious or stressed, it’s very important that you talk to your GP. Help is available, such as counselling or extra support services. Speaking to friends or family members can help. Speaking to social services could also help as they may be able to put more support in place for you. 

Getting help and support before you think you need it is one way to prepare for the future. Some support services have waiting lists. It may be reassuring to know that you have a plan, and that you will have help when you need it most.

Setting out your priorities 

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

You may also feel torn between your different responsibilities. You might be trying to care for the person with dementia as well as having other important roles. This could be looking after a household, caring for children or other relatives, going to work, or managing your own health issues.

As much as you may want to manage everything, it will not always be possible. It’s important to recognise if your caring role has become too much for you. You may need to take a step back from some parts of the role, if you can. It can be difficult if other people try to help but give you advice that may not apply to your situation. Remember that you can’t do everything on your own and you won’t be able to please everyone.

Here are some ways that can help you:

• Work out the things you really need to do for the week or month ahead, and the things that are less important. Focus on the important ones first.
• Make a to-do list to help you stay on top of daily tasks and cross them off when you’ve completed them. This can help you feel more in control. Writing things down can help to clear your mind of buzzing thoughts.
• Let people know about things they could help you with to take some pressure off you. Even small tasks can make a difference, such as picking up medication or groceries.
• Don’t be hard on yourself about the things you can’t manage – this is very normal. 
   

Your need for breaks as a carer

It can be difficult to find time for yourself when you are caring for a person with dementia. However, taking regular breaks from caring and doing something you enjoy is important for your own wellbeing. You will be able to cope better if you make time for yourself. Many carers find this helps them with their caring role.

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. Small things can make a difference, such as listening to a song you like.

When you do get time to yourself, you might have to use it to catch up on tasks, like 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. It’s healthy to have time to reflect and relax. However, socialising is also very important for your overall wellbeing.

Having time apart can help to ease any tensions or frustrations you may both have. You don’t have to take long breaks from caring – a short time to yourself could make a lot of difference.

So that you can take a break, ask if someone you know can spend a few hours with the person you are caring for. This could be a friend or family member. Your local authority may also 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’ . It could be for an hour or two, or for days or even weeks. 

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 dementia directory.