PRE-DEATH GRIEF FOR PEOPLE WITH DEMENTIA
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.
T
he guideline published in November 2023 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.
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