Grief, Anticipatory Grief and Bereavement
Bereavement refers to the event of death of a person where there was an enduring relationship. Grief is an emotional response to bereavement, but you can also feel grief through other loss, such as loss of a relationship or loss of good health. Grief is a natural response to the loss of someone and often involves intense feelings, such as numbness, anger, guilt, mood swings, fear of what is to come, sadness, and anxiety. Grief is individual and it doesn’t have a timeline. 23
For carers of someone with dementia loss may occur before the death of the person. The loss may be a reaction to the loss of the person and relationship. This is called anticipatory grief and it is important to consider if family members may be experiencing this.
Abnormal or complicated grief is when people experience extreme and disabling grief. palliAGED offers a variety of resources to learn more about grief, loss and bereavement. There are links to a guide for assessing bereavement and support, and a tool to distinguish between depression and grief.
For quick tips download the palliAGED Practice sheets on grief and loss for Nurses (280kb pdf) and Careworkers (361kb pdf).
The palliAGED family carers section has resources to support family members and these can be used to have conversations with family. The person with dementia may experience grief and loss and require support.
This fact sheet from the Irish Hospice Foundation (172kb pdf) provides some tips for workers.
ELDAC Toolkit Educational Video
The ELDAC After Death Care and Bereavement educational video helps with acknowledging grief and loss; providing space and time for family/carers to ‘be’ with their loved one, and recognising potentially complicated bereavement. The video contains general information on this topic to assist aged care staff across care settings, even though it was developed to accompany the ELDAC Home Care Toolkit and is not dementia specific.
Grief Australia offers education for the wider community to improve grief and bereavement knowledge. Education and training programs are offered as seminars, workshops, courses, conferences, webinars and customised training that meet the specific needs of organisations and agencies. You can find more information on bereavement support. Grief Australia developed the MyGrief app that can provide tailored strategies to help carers address their challenges during bereavement.
CarerHelp is a website that provides information for carers of people who are at the end of their life. The information is in Carer Pathways. Pathway 5 is about caring after the person has died. It is not dementia specific but has useful information for carers. This includes:
- Videos on what is grief and managing grief
- Understanding grief
- Tips for managing grief
- What to do when grief doesn’t go away
- A learning module for carers – After Caring.
CarerHelp also has resources for carers within specific population groups.
The Carer Gateway funded by the Australian Government supports carers. There is a section on planning for end of life, which includes information about legal steps and duties after someone has died.