CRE Alzheimer
Salamanca

• Videoteca
• Videoteca, Conferencias

Debbie Tolson

Global Summit Alzheimer

• Demencias

Directora del Centro para la Política y Práctica del Alzheimer y profesora de Enfermería Gerontológica e investigadora del Grupo Interdisciplinario del Instituto de Investigación Aplicada en Salud de la Universidad del Oeste de Escocia.

Late stage or severe dementia is often associated with end of life care. The Palliare Project www.uws.ac.uk/palliareproject highlights that a more nuanced understanding of advanced dementia is needed with a focus on living rather than dying. Dementia symptoms in the later stages are complex and although the term ‘advanced dementia’ is widely used there is a lack of clear definition (Hanson et al 2016). Notable exceptions are Alzheimer Scotland’s Advanced Dementia Practice model (Alzheimer Scotland, 2015) and Palliare (Holmerova et al., 2016). Both of these frameworks recognise that people can live with advanced dementia for months and sometimes years with dementia specific extended palliative care needs associated with diseases such as Alzheimers.

The Palliare project was undertaken by a partnership of 7 countries and involved 11 work streams. The first phase of the project sought to develop an inter-professional understanding of best prac¬tice for advanced dementia care and family caring, and an understanding of the contribution of different disci¬plines to the achievement of best practice. The second phase focussed on developing an interprofessional learning framework (Tolson et al 2017) to equip the European qualified dementia workforce to transform advanced dementia care and deliver best practice.

This talk begins with an overview of the project and key findings before focussing on a Best Practice Statement detailing ideal advanced dementia practice using a new positive approach called’ Palliare’ aimed at supporting individuals to live the best life possible and to sustain family caring. The final phase of the project established an experienced based interprofessional learning framework (Tolson et al 2017) including an international online community of practice and four ‘Palliare’ Modules. In combination these have the potential to equip qualified practitioners, such as doctors, nurses, allied health and social care professionals to champion change and achieve the delivery of best advanced dementia practice based on the Palliare model. A key learning point is that current practice, existing care services and approaches to dementia education seem to perpetuate the ‘inverse care law’ where those who need the most care receive least (Tolson et al 2016).