FACTSHEET: Grief and Dementia
It is common for caregivers to have feelings of loss and grief as they care for a loved one with dementia. You are entitled to these emotions and may start to experience them as soon as you learn diagnosis. Caregivers are often silent in this process and it is important to share your feelings and seek support.
Feelings of grief
It’s normal to feel loss when you care about someone who has dementia. It’s also normal to feel guilty, abandoned and angry.
Dementia gradually takes away the person you know and love. This is a mourning process and you may experience different phases of grieving: denial, anger, guilt, sadness and acceptance. These phases of grief don’t happen neatly in order and may ebb and flow as dementia progresses.
Some common experiences in the grieving process include:
Denial
- Hoping that the person is not ill
- Expecting the person to get better
- Convincing yourself that the person has not changed
- Attempting to normalize problematic behaviours
Anger
- Being frustrated with the person
- Resenting the demands of caregiving
- Resenting family members who cannot or will not help provide care
- Feeling abandoned
Guilt
- Having unrealistic expectations with thoughts like: “I should have done ...” “I must do everything for him or her” or “I must visit him or her every day”
- Feeling bad because you are still able to enjoy life
- Feeling that you have failed (eg. you cannot care for the person at home)
- Having negative thoughts about the person or wishing that he or she would go away or die
- Regretting things about your relationship before the diagnosis
Sadness
- Feeling overwhelmed by loss
- Crying frequently
- Withdrawing from social activities or needing to connect more frequently with others
- Withholding your emotions or displaying them more openly than usual
Acceptance
- Learning to live in the moment
- Finding personal meaning in caring for someone who is terminally ill
- Understanding how the grieving process affects your life
- Appreciating the personal growth that comes from surviving loss
- Finding your sense of humour
- Asking for and accepting help from others
Ways to cope with grief and loss
Acknowledge your feelings
Think about all your feelings. Allow yourself to be sad, angry or frustrated and accept any feelings of guilt. It is common to feel conflicting emotions (eg. to feel love and anger at the same time).
You may experience feelings of loss more than once
As dementia progresses, you may experience feelings of grief and loss in different ways. Accept and acknowledge these feelings and ensure you seek support.
Claim the grieving process as your own
No two people process grief the same way. Different factors like: the severity and duration of your loved ones illness; your own history of loss and the nature of your relationship with the person who has dementia may impact on your journey.
Talk with someone
Talk with someone you trust. This may include other caregivers or support groups.
Combat feelings of isolation and loneliness.
Caregivers often give up enjoyable activities and companionship. Make a lunch or movie date with friends. Taking a break may help you relieve stress and strengthen your support network. Stay involved in activities that you enjoy.
Join a support group
When you talk with other caregivers share your emotions. Cry and laugh together and try to limit conversations to caregiving tips. There are many support groups (including online) and other resources that you may be interested in. A list of these is available from NALAG.
Know that some people may not understand your grief
People often think that grief happens when someone dies. They may not know that it is possible to grieve deeply for someone who has a progressive cognitive illness.
Accept yourself
Think about what you expect from yourself. Is it realistic? Some things may be beyond your control.
Take care of yourself
The best thing you can do for the person you are caring for is to stay healthy. This includes taking care of your physical, mental and emotional well-being. Try to do things that bring joy and comfort.
When grief becomes too much. If your grief is so intense that you feel unable to function reach out to your GP or a counsellor.
Other Resources for Carers
- Dementia Australia (https://www.dementia.org.au/(https://www.dementia.org.au/))
- Carers Australia (https://www.carersaustralia.com.au/(https://www.carersaustralia.com.au/))
- Australian Government Department of Health (https://www.health.gov.au/(https://www.health.gov.au/))
- Carer Gateway (https://www.carergateway.gov.au/(https://www.carergateway.gov.au/))
- Dementia Support Australia (https://www.dementia.com.au/(https://www.dementia.com.au/))
- Older Persons Advocacy Network (https://www.opan.com.au/(https://www.opan.com.au/))