Dementia palliare: positive practice approaches to person centred advanced dementia care in the European and Scottish context

Background
Workforce training, commitment to good quality continuing care and services for people living with dementia are World Health Organisation priorities. However, the reality is that research and training on advanced dementia is scarce, this highlights the need for accessible education on advanced dementia.

Aim of the work
To design accessible education for professionals to support and manage care for people with advanced dementia.

Approach
Dementia Palliare was a European Union Erasmus + funded project that involved seven European countries from September 2014 - 2016. The project began with literature review on the extended palliative phase of dementia. The dementia policies and action plans in the seven countries were also reviewed. Each partner conducted three or four in-depth case studies (n=22) that focused on the experience of advanced dementia care in ‘typical’ care settings within that country. The availability of dementia education was scoped and an educational gap analysis conducted. These activities informed the preparation of a European Best Practice Statement (BPS) detailing ideal advanced dementia practice using a new positive approach called ‘Dementia Palliare’.

Outcome
There was no coherent and generally accepted definition of advanced dementia in the literature. We found a lack of accessible education on advanced dementia care to support professionals to provide evidence informed care and support.

Conclusions
The BPS is a guide to promote consistent and cohesive approach to advanced dementia care. Its focus is to stimulate learning among professionals, to support them to support individuals to live the best life possible with advanced dementia and to sustain family caring. An international online Community of Practice has been designed, this virtual space is designed to facilitate practitioners from across Europe to share and learn from one another. Four modules on advanced dementia care have also been developed; these will be delivered across the European partnership of Universities.