Supporting carers with anticipatory grief for a loved one with dementia: systematic review


Caring for someone close to you with dementia can be a long and rocky road. Family carers often focus on the needs of their loved one and forget about their own health and wellbeing, which can make it harder to cope as time goes on.

The relationship between the carer and the recipient of care can change enormously over time and carers can often experience grief and bereavement, sometimes many years before their loved one dies.

The Government set out it’s support for carers and the priorities for action in the Recognised, valued and supported (PDF) 4-year policy document that was published in late 2010.

Research looking into grief reactions in dementia carers is relatively limited, so it’s encouraging to see a  study from researchers at University College London that seeks to systematically review the existing literature on characteristics, prevalence, predictors and associations of grief in dementia carers before and after death.

The authors conducted a literature search and found over 500 articles. They excluded research not specific to their question, non-English language articles, reviews and opinion pieces. They included a number of different study types (such as cross-sectional surveys and prospective multi-site studies) and assessed the quality using reliable tools:

  • Boyle’s criteria for quantitative studies
  • NICE guidance for qualitative studies

31 papers were included in the final review and overall the quality of these studies was low to medium, although there were a handful of good quality studies. Two-thirds of the studies dealt with anticipatory grief (i.e. before the death of the person with dementia) and the other third looked at post-death grief.

Here’s what they found:

  • The prevalence of anticipatory grief is estimated at 47%-71%, although these figures are based on quite poor quality research
  • Anticipatory grief is highest in moderate to severe dementia, where the spouse is the carer and the person with dementia is in a care home
  • Carers with anticipatory grief often also become clinically depressed
  • The strongest predictive factors for grief after the death of a loved one with dementia are being a spouse carer and being depressed

Of course, grief is a perfectly normal reaction to losing a loved one to death or to dementia, but this research helps to highlight ways to identify carers who need support.

Further higher quality studies will help add to our knowledge in this field. This review excluded non-English language research, which may mean that useful evidence was missed. It also focused on mostly US studies, which means that the results may not be generalisable to a UK audience.


Chan D, Livingston G, Jones L, Sampson EL. Grief reactions in dementia carers: a systematic review. Int J Geriatr Psychiatry. 2012 Mar 8. doi: 10.1002/gps.3795. [Epub ahead of print] [PubMed abstract]

Recognised, valued and supported: next steps for the Carers Strategy (PDF). Department of Health, 25 Nov 2010.

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Andre Tomlin

André Tomlin is an Information Scientist with 20 years experience working in evidence-based healthcare. He's worked in the NHS, for Oxford University and since 2002 as Managing Director of Minervation Ltd, a consultancy company who do clever digital stuff for charities, universities and the public sector. Most recently André has been the driving force behind the Mental Elf and the National Elf Service; an innovative digital platform that helps professionals keep up to date with simple, clear and engaging summaries of evidence-based research. André is a Trustee at the Centre for Mental Health and an Honorary Research Fellow at University College London Division of Psychiatry. He lives in Bristol, surrounded by dogs, elflings and lots of woodland!

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