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What is ‘pre-death grief’ and how can you support people going through it?

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Healthcare workers should be trained in ‘pre-death grief’ while supporting families of dementia patients, according to new guidance.Healthcare Improvement Scotland’s guideline – published by the Scottish Intercollegiate Guidelines Network – calls for improved support for carers, and acknowledgement that pre-death grief impacts wider family networks as well as the patient.While dementia is the focus here, it’s something that can potentially occur for people facing a wide range of health conditions and diagnoses.So, what exactly is pre-death grief, what impact can it have, and how can we support those going through it?Emma Smyth, a grief specialist and social worker at the end of life charity, Marie Curie, said: "If you are caring for someone who has been given a terminal diagnosis, or are close to someone who has, it is very common that you will experience what is called anticipatory grief.“It isn’t a concept that many people are familiar with, but, simply put you start to grieve for the person before they have died.“You may begin to notice physical decline in that person, or perhaps elements of their personality change, which can often happen to people with dementia, for example.

In some cases, with a spouse or lover, intimacy may change and that can have a big effect on you.”However, it may also occur where an illness has resulted in significant loss for those affected, even when there isn’t necessarily a terminal diagnosis attached – for example, there may be a big sense of grief following a severe stroke or brain injury.Smyth believes the nature of grief is “complex and individual to the person”, but on the whole, pre-death grief can have a big impact on somebody’s mood and wellbeing.

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