End of life care

Our aims

Develop a bespoke dementia end of life training package for primary care networks and care home teams, utilising the University College London’s rules of thumb guide. This guide was created as part of a research project funded by Marie Curie and Alzheimer’s Society and was developed by an experienced team of researchers and health and social care professionals, including GPs and psychiatrists and a group of family carers. The training content is designed to be consistent across Greater Manchester whilst allowing for flexibility in delivery to suit locality needs. The project is taking a pump-prime approach with interested locality educators delivering a small number of sessions in their locality. Primary care networks and care homes have been selected as 58% of people with dementia will die in the care home setting. It’s also hoped that the training will support the the Enhanced Health in Care Homes Framework.

Why this matters

Dementia and Alzheimer’s disease have been the leading cause of death in England since 2015 (Office of National Statistics). However, dementia is still not universally recognised as life-limiting and when people are in the dying phase, they are often no longer in contact with dementia specialists (58% of people with dementia will die in the care home setting). Dying with dementia brings unique challenges that can be difficult to manage without training. It is hoped that by delivering the training to primary care network and care home teams who work together to support 58% of people dying with dementia, a shared language and consistent tool will help them feel more confident in meeting the unique needs of those dying with dementia and their carers.

What we’ve achieved so far

  • Agreed on a Greater Manchester syllabus for dementia end of life training with a big focus on the University College London’s rules of thumb guide
  • Greater Manchester hospice educators translated the syllabus into a lesson plan and slides designed to be delivered to primary care network and care home teams
  • Training webinar tested with a Trafford team and adjustments made accordingly
  • Educator Packs created to help interested educators plan, deliver content and evaluate training consistently across Greater Manchester (although flexibility will be allowed in delivery according to educator’s locality needs, content will remain constant).

Next steps

  • Strategic Clinical Network Palliative and End of Life Care Team to take this training forward at a time when capacity amongst educators, Primary Care Networks and care homes is improved during/post COVID-19.  Dementia United will remain key stakeholders and provide funding.

Contact: elaine.parkin1@nhs.net