PRE-DEATH GRIEF REFERS TO THE ANTICIPATION OF WHAT MAY LIE AHEAD FOR A PERSON WHO RECEIVES A DEMENTIA DIAGNOSIS
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.”
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
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