Background A range of losses occur throughout a person’s journey with dementia. Losses occur for the person and for their families as the disease progresses. Grief as a result of these losses is under-recognised and under-reported by people with dementia and their families.

Aim To develop a guidance document and factsheet to support healthcare staff to recognise, acknowledge and respond to loss and grief in dementia.

Methods An Expert Advisory Group (EAG) was convened. The group followed the NCEC approach to developing clinical guidance which included literature reviews, consensus building and consultation with key stakeholders.

Results The guidance document and factsheets are available to support healthcare staff in working with loss and grief in dementia. The document has four key considerations for staff to use as good practice when working with loss and grief in dementia. These are followed by four guidance areas which are responding to loss and grief, supporting the person with dementia experiencing loss and grief, supporting families with loss and grief and supporting yourself as a healthcare staff member. Resources will be listed for each of these areas.

Conclusion Recognising loss and grief as part of the experience of having dementia is a core part of good dementia care. Provision of supports to people and their families at transition points is essential.

Future plans This guidance document is one in a suite of seven guidance documents developed relating to different aspects of dementia palliative care. A dissemination plan has been developed to ensure findings and guidance are implemented and evaluated.