Grief reactions in dementia carers: a systematic review

Objective: Supporting dementia carers is an identified target of the UK government, yet we know little about such family carers' grief before and after the death of the person with dementia for whom they care. We systematically review the existing literature on characteristics, prevalence, predictors and associations of grief in dementia carers before and after death.

Methods: We searched electronic databases and found 31 publications meeting predetermined criteria.

Results: Grief in dementia carers, which may be normal or complicated, is a complex reaction to losses occurring before and after death. Carers experience anticipatory grief as multiple losses for themselves (companionship, personal freedom and control) and the person with dementia. Anticipation and ambiguity about the future, anger, frustration and guilt are core features. Anticipatory grief is greatest in moderate to severe stage dementia and spouse carers, especially when the person with dementia is institutionalised. There was poor quality evidence about the prevalence of grief; studies reported anticipatory grief between 47% and 71%, and complicated grief after death is estimated around 20%. Carer depression increases with anticipatory grief. Being a spouse carer and being depressed are the strongest predictors of complicated and normal grief after death.

Conclusion: Grief in dementia carers can be expected; however, those at risk of distressing anticipatory and complicated grief may be identified and targeted for intervention when necessary. Higher quality research from a wider range of samples and countries is needed to explore this complex and emergent topic.