Grief, loss and bereavement

4. 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.