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- Manage Dying
- Bereavement
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Dementia can bring multiple losses for people, their family and carers. This may include the loss of a sense of self, memory, role, control, capacity to communicate, and ability to plan.
Behavioural symptoms and periods of decline that may often be unpredictable can contribute to anticipatory grief, or grief responses that can occur before a death has happened. This can undermine the quality of family and caring relationships.
Other forms of loss that are very relevant to dementia include:
- Ambiguous loss [1] occurs where someone may be physically present, but emotionally or psychologically absent. Sometimes this is referred to as ‘the long goodbye’. This kind of grief can lead to mixed and challenging feelings for family and carers, and a sense of the loss of the relationship well before a death occurs.
- Disenfranchised grief [2] occurs where losses may not be recognised or well-supported. As dementia is often not well understood in society, people and their family or carers may experience this form of grief. Carers of people with dementia often provide care over many years, meaning their life may become heavily shaped by their caring role. [3] They may be quite socially isolated after the death of the person for whom they are caring. This may place them at increased risk of poor outcomes in bereavement.
Information about the dying process, loss and bereavement should be provided for family and carers. Create a simple bereavement pack that team members can offer to families shortly after the death of a person in your residential care setting. A bereavement pack is typically a small package given to family members or carers that includes printed information on grief, practical tips, and support services. Some organisations also create their own booklet about what do to after a death, with practical information about who to contact, and how to seek support. For guidance about how to create a bereavement pack and what you might include, see these suggestions.
It is important that providers plan and deliver care that supports the spiritual, cultural and psychosocial needs of people with dementia. This will require thoughtful attention to the grief and bereavement needs of people with dementia, and their family and carers. Care workers and clinicians are well-placed to provide support and information. It is important to be aware of core concepts including grief, anticipatory or pre-death grief, and bereavement. As well as factors that may shape the risk of negative grief- and bereavement-related outcomes.
See these ELDAC resources for summaries of this information that applies regardless of your setting of care:
- Grief and Bereavement: Core Concepts for Care Workers (pdf)
- Grief and Bereavement: Core Concepts for Clinicians (pdf) (includes conversational prompts).
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How to approach grief and bereavement support when working with people with dementia
ELDAC Practice Tips for care workers (pdf) and clinicians (pdf) provide general guidance on how to:
- offer support before and after a death, and for other losses
- share information about dying, grief and bereavement
- help people to connect with their own social support
- identify and respond to people with extra or complex needs.
All workers involved in the care of people with dementia should:
Offer space for people and their family or carers to express difficult feelings and thoughts that can arise from layered or multiple losses associated with dementia.
- For instance, you might share with family or carers this story from Dementia Australia about anticipatory and ambiguous loss and dementia.
Recognise factors that might mean that a person or family/carers are at risk of negative outcomes related to grief, such as mental health concerns or Prolonged Grief Disorder. Risk factors to be especially mindful of when thinking about dementia and grief might include:
- High levels of pre-loss grief or distress.
- Low social support or isolation that has increased over the course of the illness and caring.
- High levels of caregiver burden.
Review any concerns with others involved in the care.
Respond in an informed way to people with dementia who are grieving or bereaved. For example:
- Be aware that people impacted by memory loss and confusion may not recall that a death has occurred and may revisit losses repeatedly over time. They may express grief through behaviours or physical changes, rather than words. Such as experiencing restlessness or anxiety.
- Review strategies for supporting their grief with others involved in their care, to ensure a consistent approach. This may include simple ways of acknowledging and validating feelings and honouring relationships. For example, start the conversation by saying “I know it’s been a really hard time since the death of [name]. What were they like?”.
- For more information see the ELDAC factsheet on Tips for Supporting Grieving and Bereaved People with Dementia (pdf).
Provide people with dementia and their family or carers with simple information and resources on dementia, end of life and grief.
- For example, you might share the advice from Dementia Australia to support someone who is grieving.
The specific role of clinicians
Clinicians working with people with dementia and their family or carers should explore and review grief and bereavement-related risk factors during interactions with them over time. The Conversational Prompts in the ELDAC factsheet on Grief and Bereavement: Core Concepts for Clinicians (pdf) offers examples on engagement.
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How to build knowledge, confidence and skills in bereavement support and dementia
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- Use the ELDAC Dementia and Bereavement Case Study about Lee and Bo for reflection and learning. This can be done on your own or with colleagues in your setting or context of care.
- Reflect on how John’s memory is honoured in the ELDAC Dementia Case Study on John.
- Download the ELDAC Bereavement resources for personal learning or to use within in-services or education in your setting:
- Tips for Supporting grieving and Bereaved People with Dementia (pdf)
- For care workers
- For clinicians
- Watch the ELDAC Toolkit Educational Video on After Death Care and Bereavement based in the home care setting. The video contains general information on how to acknowledge grief and loss and offer support to the family/carers.
- Use detailed and specific information and resources to deliver education in your organisation or setting. The Irish Hospice Foundation has a guidance document on Loss and Grief in Dementia (3MB pdf).
- Attend to your own self-care, as caring for people who are dying and grieving can raise thoughts and feelings about your own experiences of loss, whether personal or professional. Draw on a range of strategies to reflect on your own grief and loss. For examples and resources, see the ELDAC Self-Care Room, or Palliative Care Australia Self-Care Matters.
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Information for families and carers
Dementia Australia
Find information about the loss of a significant person due to dementia, what you can do, and available support.
‘Is it normal to feel this way?’ The complexity of grief
Dementia Australia
This webpage offers personal reflections on coping with grief and loss from the perspective of a family members caring for someone with dementia.
Dementia Australia
This webpage includes two episodes on grief and loss from Season 2 of the Hold the Moment podcast series. Hear how other carers have managed their grief and how a grief counsellor can help carers through the process. The two episodes are:
- Hold on to the joy: Managing grief as a carer (Episode 3)
- Helpline: Strategies to help carers with grief and loss (Bonus episode)
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References
- Boss P. The Context and Process of Theory Development: The Story of Ambiguous Loss. Journal of Family Theory and Review. 2016; 8(3):269-86. DOI: 10.1111/jftr.12152. [cited 5 Nov 2025].
- Thompson N, Doka K. Disenfranchised Grief. In: Thompson N, Cox G, editors. Handbook of the Sociology of Death, Grief and Bereavement. First Edition. New York: Routledge. 2017. p. 177-90. [cited 5 Nov 2025].
- Engel L, Brijnath B, Chong TWH, Hills D, Hjorth L, Loi S, et al. Quality of life and loneliness post-bereavement: Results from a nationwide survey of bereaved older adults. Death Studies. 2023; 47(9):994-1005. DOI: 10.1080/07481187.2022.2155887. [cited 5 Nov 2025].
Page updated 23 September 2026
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