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, conflicting feelings. 

When someone you know has dementia, you may have feelings of grief and loss, such as anger, denial or helplessness. It can help to talk about these feelings when you feel ready. You could talk to a friend, family member, or a professional such as a counsellor or psychotherapist.

Feelings after a diagnosis 

Anticipatory grief

People with dementia and their carers sometimes go through feelings of grief when they think about how dementia might develop and imagine the changes and losses it may cause. These changes may affect the person’s physical and mental abilities, relationships and future plans.

This type of grief – thinking ahead to things that may happen – is known as ‘anticipatory’. A person in the early or middle stages of the condition may experience this. As a carer you may grieve at any time as the person’s dementia progresses.

Some evidence suggests that carers who experience anticipatory grief may cope better with grief after the person dies, though this may still be painful. For some people, anticipatory grief may also increase the possibility of becoming depressed. It can help to talk about these feelings while you are still caring for the person with dementia.

Of course it is not possible to know exactly how dementia is going to affect someone. Although it can be helpful to think ahead, try to also reflect on the time that you have with the person in the here and now.

Feelings as dementia progresses

You may feel grief as the person’s dementia progresses and your relationship with them changes. You may grieve for the losses that you both go through. For some people this happens over a short period, but for others grief is ongoing.

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

  • your personality
  • your relationship to the person
  • how dementia affects them
  • the stage of the person’s dementia.

As dementia progresses, your relationship might shift from both supporting each other, to one where you take on more responsibility caring for the person. They may become more dependent on support – including from you – which might be very difficult for you both to adjust to.

Feelings of loss and grief can play a part in someone’s ability to cope with caring. Some of the changes you both go through can lead to feelings of grief that may be more difficult to manage than the person’s actual death. It is important to acknowledge any feelings of grief you may have. This is unique to you – there is no right or wrong way to grieve. You may find that your feelings change over time.

Ambiguous loss

Some people also feel a sense of loss in their relationship, even though the person with dementia is still there (known as ‘ambiguous’ or ‘unclear’ loss). You may feel that the person’s personality has changed or gone. Ambiguous loss may lead to feelings of grief that haven’t been resolved.

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