Media release: New guideline calls for greater awareness of pre-death grief for people with dementia and their carers

New guideline calls for greater awareness of pre-death grief for people with dementia and their carers

Health and care professionals need greater awareness that people with dementia and their carers may experience pre-death grief, according to a new guideline published by Healthcare Improvement Scotland. The guideline published today (Thursday) recommends that they receive more support.

Pre-death grief refers to the anticipation of what may lie ahead for a person who receives a dementia diagnosis. The grief process can affect a person in many ways, including grief for the loss of purpose in life, a feeling that their future has been taken away against their wishes and grieving for plans that may have been made and won’t be fulfilled.

It is recognised that pre-death grief can also affect loved ones and carers, as they too fear the loss of the person they know. They might also feel scared about a potential future alone and may also experience grief that future life events with children and grandchildren may not happen.

The guideline on assessment, diagnosis, care and support for people with dementia and their carers, published by the Scottish Intercollegiate Guidelines Network (SIGN), part of Healthcare Improvement Scotland, is the first guideline for dementia in nearly 20 years. The guideline recommends measures to help deal with pre-death grief including:

• More training and education for healthcare professionals on pre-death grief to improve support, communications skills and planning
• Better awareness and support of pre-death grief at significant ‘trigger’ events such as the person with dementia being moved from home into care
• Interventions tailored to the individual to help reduce grief, taking into account their hobbies and interests
• Training for staff in care homes to support patients to better understand distress caused by pre-death grief.

This new guideline provides recommendations based on current evidence for best practice in the assessment, treatment and support of adults with dementia. The guideline applies to all settings, including home, long-term care, care homes, hospital, hospice, day-care centres and primary care.

A dedicated team within Healthcare Improvement Scotland will work with NHS boards and Health and Social Care Partnerships to help put the guideline into practice.

The guideline urges more linked up working between different services and better signposting to resources and help for patients and carers. It also calls for efforts to attempt to break down the stigma of dementia.

The guideline recommends more emphasis on the needs of individuals when putting together a care plan. It also calls for more awareness of carers’ needs for social, emotional and educational support.

Dr Adam Daly, Chair of Healthcare Improvement Scotland’s 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 has been revealed to be an area that affects many people and we must ensure that this becomes a focus for improved support.

“I would encourage health and care professionals to read the guideline recommendations and implement them wherever possible when they are deciding on the best pathway of care for patients.”

Marion Ritchie, who cared for her husband Dave after his dementia diagnosis, and was a patient representative on Healthcare Improvement Scotland’s Guideline Development Group, said:

“I think the new guideline will be welcomed by anyone who has been touched by dementia – patients, families and carers alike. It offers hope that significant improvements in care can be made and better understanding in general of the disease can be achieved.

“I’m pleased to see pre-death grief recommendations in the guideline. It can affect people with dementia, as well as carers and loved ones. 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 properly recognised and highlighted and hopefully, as a result, it can be talked about and supported more widely.”

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 twenty-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 compliment the guideline and ensure that they are applied and used in a consistent manner throughout Scotland. We look forward to seeing the guideline implemented and 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.”

Link to full report and patient version of the guideline: www.sign.ac.uk/our-guidelines/dementia

Link to podcast episode: https://healthcareimprovement.podbean.com/e/improving-care-for-people-with-dementia-and-their-carers/ 

Pre-recorded interview with Dr Adam Daiy, for media use: 

https://vimeo.com/manage/videos/879787497/8f5eaf9db6/privacy

Video password: Dementia2023

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