Feelings after a diagnosis and as dementia progresses

After someone is diagnosed with dementia and as it progresses, they and the people close to them may have many different feelings, such as guilt, loss and grief. 

Feelings after a dementia diagnosis

A dementia diagnosis can be difficult to cope with and accept, for both the person with dementia and those close to them. Feelings of loss, anger, helplessness and different types of grief – such as ‘anticipatory grief’ and ‘dementia grief’- are common. Some may be in denial about the diagnosis.

But you’re not alone – help is available, every step of the way. Alzheimer’s Society can put you in touch with the right support for you, from professional dementia workers to support groups.

Talking about your feelings can also help, whether that’s with a counsellor or psychotherapist, or informally with friends and family.

You or the person with dementia may feel grief when thinking about how their dementia might develop.

You may imagine the changes and losses it may cause, and how the person’s physical and mental abilities, relationships and future plans may be affected. This type of grief – thinking ahead to things that may happen in the future – is known as ‘anticipatory grief’.

‘Dementia grief’ is similar to anticipatory grief but is specific to dementia. You may experience this if the person’s dementia is causing them problems with communicating, reasoning, and understanding and being able to discuss what may happen in the future.

For some carers, anticipatory grief can be even harder to deal with than the grief they feel after the person has died. For some people, anticipatory grief may lead to depression. It can help to talk about these feelings while you are still caring for the person with dementia.

It isn’t possible to know exactly how dementia is going to affect someone. Looking into what may happen in the future is not always useful and can cause unnecessary distress. While it can be helpful to think ahead and make plans, try to also focus on the time that you have with the person here and now.

If the person is feeling a sense of loss about what they may not be able to do in the future, My life, my goals can help.

Feelings as dementia progresses

You and the person with dementia may both feel a sense of loss as their condition progresses and your relationship changes. You may grieve for a short time as you experience these changes, or grief can be ongoing. Your feelings of grief may also change or go back and forth over time.

How you and the person experience grief can be affected by many things, such as:

  • your personalities
  • your relationship
  • how dementia affects the person
  • the stage of the person’s dementia.

As dementia progresses, your relationship might shift from both of you supporting each other, to one where you take on much more caring responsibility. The person may become more dependent on support from you and others, which might be very difficult for you both to adjust to.

Feelings of loss and grief might make it harder for you to cope with caring. Some of the changes you both go through can be harder to process than the person’s death. It’s important to acknowledge any feelings you have and try not to feel guilty about them. There is no right or wrong way to grieve.

Some people feel a sense of loss in their relationship, even though the person with dementia is still alive. You may feel that the person’s personality has changed so much that they do not seem to be the same person, leading to a sense of grief that is difficult to process.

This is known as ‘ambiguous loss’ or ‘living grief’.

Managing your feelings

When you’re supporting a person with dementia, you may sometimes feel you’re coping well, and at other times feel overwhelmed by grief, or as though you have no feelings left.

Some people find they feel angry or resentful at how things have turned out, things they have lost, and the difficulties they have to face. Some feel a sense of loss about their own life. You may feel guilty or shocked if you are experiencing these emotions yourself.

Try to remember that these feelings are a natural and valid response to a difficult situation.

Caring for a person with dementia can have a huge emotional impact, and feelings like these can be very difficult to cope with. It can be even harder if there are people around you who don’t fully understand or accept the impact the person’s dementia is having on you.

Support is available, and it’s important to ask for this if you need to. It can help to talk about your feelings with a trusted friend or family member, a professional such as a dementia support worker, dementia specialist nurse or counsellor, or other carers (perhaps by attending a support group).

To find professionals or support groups, speak to your GP or local Alzheimer’s Society, or visit our online directory. You can also join an online community such as Alzheimer’s Society’s Talking Point to discuss your feelings honestly with people in similar situations. 

  • Find ways to express your feelings

For example, many people find that allowing themselves to cry helps them to express their grief. Some people find it helpful to write a journal or to do creative activities such as art, music or drama.

  • Consider your own needs

Try to make time to do something for yourself each day, such as going for a walk, having a massage, or meeting or calling friends. Taking some time to relax even for a short time is very important.

  • Look after your physical and mental health

Try to eat well, get plenty of rest and do some exercise. If you’re feeling low or anxious, or are very tired or not sleeping, speak to your GP. 

  • Look after any spiritual needs you have

For example, if you regularly go to religious services, try to continue doing so. If you’re not able to go to a place of worship, watching online services, praying or singing at home can be helpful.

  • Take a break

If you feel that you need a break to help you cope, you can speak to a social worker or dementia support worker about arranging this. Friends or family may also be able to step in to help. For more information see our pages on Replacement care (respite care) in England, Wales or Northern Ireland.

  • Focus on the things you and the person can still do together

There will be lots of changes to adjust to as the person’s dementia progresses. But try to also look for new opportunities to spend time with the person, as well as other interests you have that you enjoy.

Supporting a person with dementia to manage their feelings

The person with dementia may also develop feelings of loss and grief as their condition progresses. These feelings might vary as their awareness of their condition comes and goes.

They may grieve for the loss of their abilities, skills and independence and worry about what’s going to happen in the future. As their environment becomes unfamiliar and more confusing, they can feel more isolated. This can be difficult for the person to cope with, but there are things you can do to support them.

  • Give the person time to express how they’re feeling (if they want to)

Reassure them when they’re feeling distressed. If they’re not able to communicate as they normally would, look for other ways they can express themselves such as through music, art or other creative activities.

  • Support them to keep doing the things they want to do and enjoy

Some activities may need to be adapted as the person’s condition progresses. Or you could help them find new things they enjoy doing – for example, they could try a new hobby or get involved in their local community. 

This can help make it easier for the person to meet their needs. 

  • Think about any spiritual needs the person has

For example, support them to continue with any religious or spiritual practices such as praying, singing, meditating or attending services (in person or online). These may be a source of comfort for the person.

For example, they could talk to a dementia support worker, counsellor or psychologist about how they are feeling. Support groups – either face-to-face or online – can also be helpful. 

It’s important to stay connected with the person, but this can be harder due to coronavirus. If you’re unable to meet in person, keep in touch via telephone or video calls. There might be practical help you can give them too if restrictions allow you to. For example, you could help with their shopping, household or gardening chores or cooking.

Feelings when a person moves into residential care

If the person with dementia goes into residential care, it’s a big change for you both. It can bring a range of feelings, including a strong sense of loss. You may miss the person, especially if they are your partner or they have been living with you. It can also feel like you are no longer able to play an active part in their care.

These feelings are normal and it can take time to adjust. There will be ways that you can stay involved, which might help you to accept the changes. 

Carers – looking after yourself

More information on managing your feelings and looking after your wellbeing

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