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.

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.

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. 

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.

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

Read more
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