Pre-death grief | Right Decisions

Dementia can be experienced for more than a decade. During this time, people with dementia and their families and carers may experience forms of grief that have been under-recognised, underdiagnosed and undersupported.¹⁵⁵

The bereavement experience or ‘anticipatory grief’ for informal carers of people with dementia starts long before the physical death of their dependant. From the point of diagnosis of a terminal illness, and throughout the mental and physical deterioration as the illness progresses, carers experience multiple losses.¹⁵⁹

Pre-death grief in people with dementia

Health and social care professionals should be aware that people with dementia may have experiences that are grief-like. These can relate to:

progressive losses in personal identity that can result in mourning for the old self
thinking about their death
loss of their plans for the future
loss of social roles, relationships and competencies.

Healthcare professionals can find further information on pre-death grief in the carers of people with dementia in section 7.2 Pre-death grief in people with dementia from SIGN guideline 168 Assessment, diagnosis, care and support for people with dementia and their carers.

Pre-death grief in the carers of people with dementia

Healthcare professionals should be aware that carers of people with dementia may experience pre-death grief from the point of diagnosis and throughout the stages of dementia, and sensitively enquire about these experiences:

worsening pre-death grief as dementia becomes more severe
worsening pre-death grief at transition points, such as when the person with dementia is moved to long-term care.

Healthcare professionals can find further information on pre-death grief in the carers of people with dementia in section 7.3 Pre-death grief in the carers of people with dementia from SIGN guideline 168 Assessment, diagnosis, care and support for people with dementia and their carers.

Assessment and measurement of anticipatory and pre-death grief in carers

Healthcare professionals should offer a holistic assessment of carers that includes predeath grief, with consideration of appropriate management and interventional strategies. Interventional strategies should be carefully considered because coping strategies for carers such as, avoidance of grief and distancing from the person with dementia, can be protective for the carer enabling them to cope with caring responsibilities and their daily tasks.

Healthcare professionals can find further information on pre-death grief in the carers of people with dementia in section 7.4 Assessment and measurement of anticipatory and pre-death grief in carers from SIGN guideline 168 Assessment, diagnosis, care and support for people with dementia and their carers.

Pre-death grief and depression in carers

Health and social care professionals should be aware that pre-death grief experienced by carers of people with dementia:

is associated with depression, and care should be taken to avoid misdiagnosis of depression; treatment for carer burden and depression, may not directly address predeath grief
can be distressing and disabling, and has an impact on wellbeing.

Grief and depression can co-occur and grief should not preclude the carer from receiving treatment for depression.

Healthcare professionals can find further information on pre-death grief in the carers of people with dementia in section 7.5 Pre-death grief and depression in carers from SIGN guideline 168 Assessment, diagnosis, care and support for people with dementia and their carers.

Support and management approaches for carers with pre-death grief

Health and social care professionals should receive guidance and training on the assessment and support of pre-death grief for carers of people with dementia.

Assessment, support and management approaches for pre-death grief should be focused on carers and family units, as well as people with dementia, and could include coping skills for loss and grief.

To reduce the impact of pre-death grief in carers of people living with dementia, postdiagnostic support for carers could include psychoeducation using cognitive-based approaches on the role of grief and loss in the adjustment to caring for someone with dementia, and later for bereavement as part of a wider programme to support carers. Interventions should be individualised to carers’ needs:

consider face-to-face, online or telephone, individual and group delivery.

Psychotherapeutic support for grief should be delivered by practitioners trained in psychological approaches, with expert knowledge and experience of working with people with dementia and their carers.

Practitioners with appropriate knowledge skills and expertise (eg psychologists, nurses, occupational therapists, including the third sector workforce), defined in the Promoting Excellence Framework in Dementia,¹¹ could deliver psychological approaches for grief.

Healthcare professionals can find further information on pre-death grief in the carers of people with dementia in section 7.6 Support and management approaches for carers with pre-death grief from SIGN guideline 168 Assessment, diagnosis, care and support for people with dementia and their carers.