‘Pre-death grief’: How the loved ones of dementia patients suffer

Healthcare workers say they need 'increased conversations' around the impact on those caring for dementia patients.

Scottish health workers urge they need training for ‘pre-death’ grief of dementia patients’ families Getty Images

Healthcare workers should be trained in “pre-death grief” while supporting families of dementia patients, according to new guidance.

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.

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.


New guidance will encourage healthcare workers to be trained in “pre-death grief” when giving support to families of dementia patients. #dementia #healthcare #news #scottishnews #uk #uknews #stvnews

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Dr Adam Daly, chairman of the HIS guideline development group and a consultant in old age psychiatry, said: “The guideline work has involved looking at every aspect of dementia from diagnosis through to support and care.

“Pre-death grief affects many people and we must ensure that this becomes a focus for improved support.”

Marion Ritchie, who cared for her husband Dave after his dementia diagnosis and was a patient representative on the guideline development group, said: “I think the new guideline will be welcomed by anyone who has been touched by dementia.

“It offers hope that significant improvements in care can be made and better understanding of the disease can be achieved.

“I’m pleased to see pre-death grief recommendations in the guideline. It is a very difficult issue to deal with and one I struggled with, along with my family, at various stages of my husband’s dementia journey. I’m delighted that it is now being recognised.”

Henry Simmons, chief executive of Alzheimer Scotland, said: “Alzheimer Scotland welcomes the new guideline and congratulates the team who have produced it with such detail. The team have applied a sound evidence base and rigorous process to arrive at the key recommendations.

“There has been a 20-year gap since the previous version and many new areas of practice and understanding have evolved in this time.

“The guideline approaches some of the very complex issues involved in delivering high-quality, person-centred care for people with dementia and their families with great sensitivity and understanding, in particular, highlighting the significant emerging understanding of anticipatory grief and loss.

“There is no doubt that much work will be needed to support a comprehensive workforce training and development programme to ensure that they are applied and used in a consistent manner throughout Scotland.

“We very much hope this will continue to drive forward dementia practice and increase the standard of care for everyone living with or caring for someone with dementia.”

A Scottish Government spokesperson said: “We welcome the work led by Healthcare Improvement Scotland to develop this guideline, in particular its recognition of the voices and experiences of people living with dementia and their care partners.

“This includes recognising the impact of a dementia diagnosis on a person’s family, and the ‘anticipatory’ or ‘living’ grief they can experience.

“Our new Dementia Strategy for Scotland delivery plans will aim to ensure that the needs of care partners are addressed.”

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