‘Pre-death grief’ training urged for carers of dementia patients in Scotland

Press release, Scotland news
16 November 2023

Healthcare workers should be trained in ‘pre-death grief’ while supporting families of dementia patients, according to new guidance published this week.

Healthcare Improvement Scotland’s guideline, which is the first in nearly 20 years, recommends better support, access to resources and increased conversations around dementia in an attempt to destigmatise it.

It has been published by the Scottish Intercollegiate Guidelines Network and is aimed at improving treatment of dementia patients in hospitals, care homes and other environments.

A dedicated team within Healthcare Improvement Scotland (HIS) will now work with NHS boards and health and social care partnerships to help put the guideline into practice, focusing on best practice.

Dr Adam Daly, chairman of the HIS guideline development group and old age psychiatrist at the Royal College of Psychiatrists in Scotland, said:

“The guideline work has involved looking at every aspect of dementia from diagnosis through to support and care.

“Pre-death grief is really about the loss of the person before their actual death. It affects many people and we must ensure that this becomes a focus for improved support.

“Dementia is a condition which is progressive unfortunately, and people will see their relative fading away over the course of months or years.

“These guidelines aim to improve awareness of that and try to make sure that patients and their loved ones receive better support.”

The guideline urges improved support for carers and acknowledgement that ‘pre-death grief’ impacts wider family networks as well as the patient – such as the realisation that milestones may not be celebrated and plans may not be fulfilled due to the diagnosis.

The guideline on assessment, diagnosis, care and support for people with dementia and their carers includes training and education for healthcare professionals on pre-death grief to improve support and planning, including activities to distract from it.

It includes better awareness and support of pre-death grief at significant events such as the person with dementia being moved into care, which could act as a trigger, and better training for care home staff to understand distress caused by pre-death grief.

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