Advice

Guilt and dementia: How to manage guilty feelings as a carer

Caring for a person with dementia can be very challenging. You’re likely to experience an extreme range of emotions, one of which is often guilt. 

You might feel like you’re not doing a good enough job of caring or setting up support for a loved one, or you may be struggling to accept help. These feelings are completely normal, and very common. 

It’s important to identify and acknowledge any feelings of guilt, so you can start managing and working through them. Here are some common situations that might lead to guilt, along with some advice on managing your feelings. 

7 ways carers may feel guilt, and how to manage them:

1. Feeling that other carers seem to manage better than you

Meeting up with other carers at support groups or reading about other people’s experiences might make you think other carers are coping better than you are. You may feel guilty you haven’t lived up to your own expectations or those of the person with dementia, or to the expectations you believe other people have of you. But remember, there’s no such thing as the ‘perfect carer’, and it’s important not to be too hard on yourself.

Are you being realistic about what you can achieve? If not, can you reduce any of the expectations you have of yourself, or get any more help? 

Sometimes letting family and friends know how you feel and asking for support may give them the opportunity to help out.

2. Feeling bad about how you treated the person before they were diagnosed

Sometimes, carers feel bad about how they behaved towards the person before they were diagnosed with dementia. For example, you might have shown feelings of irritation or criticism towards them without realising that they were showing signs of dementia. 

Try to remember that you weren’t to know that they had dementia and you couldn’t have foreseen what the future held. 

Dementia can have a profound effect on a person’s behaviour and without advice, guidance, or the knowledge of an underlying condition, these changes can be very difficult to understand.

Bear in mind that everyone gets frustrated with their partner or family members from time to time too.

3. Feeling guilty about getting angry or irritated

If you feel angry and frustrated, you might occasionally direct this towards the person you’re caring for. Many carers find it hard to forgive themselves in this situation, especially if they have said something hurtful.

Try to remember that caring can be very stressful, and anger or frustration are natural for everyone in this situation. Taking some time for yourself to do something that you enjoy – such as reading or cooking – can help to calm these emotions. Exercise and relaxation techniques, such as deep breathing, can make you feel less anxious and less stressed and can relieve your anger and frustration.

At times when you do find yourself becoming angry or frustrated, it can help to leave the room for a while to allow things to settle.

4. Feeling guilty for wanting time apart

You may feel guilty about having time to yourself, but everyone needs to recharge their batteries now and again. It’s very important for carers to enjoy some time away from their caring role.

Many carers find that giving themselves some time apart and doing things that make them feel happy and positive, makes them more able to fulfil their role.

If the person you’re 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.

5. Feeling shameful about accepting help from others

Many carers feel they should be able to manage without any help. But looking after a person with dementia can be exhausting, physically and emotionally. 

You may be able to free up some valuable time by accepting respite care, such as help in the home, daycare services, or residential care services. This will give you more energy and may enable you to go on caring for longer.

Even if the person with dementia is initially upset about others becoming involved, they may well come to terms with the idea. The first experience of separation often makes carers feel guilty and unable to relax, but in time you will probably get used to it and will start to experience the benefits.

6. Feeling guilty about the move into a care home

Some carers may feel that moving the person into a home is a betrayal. You might think you’ve let the person down, or that you should have coped for longer. You may have previously promised the person you would always look after them at home and now feel forced to break that promise.
 
Remember that any promises were probably made in a completely different situation. The move to a care home also doesn’t need to mean that you give up your caring role completely – it’s just a different way of caring.

Some carers find residential care helps them to have a better relationship with the person, as their time together can be more special, less stressful, and more like it used to be.

7. Mixed feelings about the person’s death

When someone with dementia dies, many carers say they initially feel some sense of relief. Then they feel ashamed or shocked that they have had these feelings.

Rest assured, relief can be a normal reaction. Many carers go through much of their grieving process throughout the illness, as they notice each small deterioration in the person.

Talk to people about your feelings and remember there is no one ‘right’ way to feel when someone you have been caring for has died.

Do you have experience of dealing with guilt or any advice for anyone who might be struggling with these feelings? Let us know in the comments below, and help other people realise they’re not alone.

This article was first published on 7 November 2018, and last updated in May 2023.