Debbie Tolson

Transforming advanced dementia: lessons from a European Project

Professor Debbie Tolson

Dementia Palliare 2014-2016http://www.uws.ac.uk/palliareproject/

Equipping the European registered dementia workforce to support advanced dementia care and family caring

@palliare1

http://www.uws.ac.uk/palliareproject/

Palliare Partnership

Scotland: Professor Dr Debbie Tolson (Project Lead) Sweden: Professor Dr Elizabeth Hanson & Dr Asa Sandvide

Portugal: Professor Dr Wilson de Abreu Slovenia: Professor Dr Brigita Skela Slavic

Finland: Kimmo Polvivaara

Spain: Professor Dr Manuel Lillo Crespo Czech Republic: Professor Dr Iva Holmerova

www.uws.ac.uk/palliareproject


• Professor Debbie Tolson • Dr Rhoda MacRae• Dr Karen Watchman• Professor Graham Jackson • Anna Waugh• Lesley Hamilton (e learning developer) • Margaret Brown• Dr Barbara Sharp (Alzheimer Scotland)• Dr Anne Fleming


Dementia Palliare Team


Dementia Palliare

Palliare Project Objective 1 An interprofessional understanding of best practice for advanced dementia care and family caring during the extended palliative care stage of illness.

Palliare Project Objective 2Develop an interprofessional learning experience to equip the European qualified workforce to transform advanced dementia care and deliver best practice.

www.uws.ac.uk/dementiapalliare

7 countries11 work streams (intellectual outputs) over two years

Literature Review Key Findings

Findings • Advanced dementia under recognised with no

overall common description in the literature• Palliare care needs range from months to

years (most commonly for 4-5 years, but for some people up to 10 years).

• Tendency to focus on end of life and dying aspects of palliative care.

• More work needed to develop new evidence informed dementia specific palliative care models – Dementia Palliare

Aim Understanding dementia care & family care associated with extended palliative care stage of the illness


A challenge to provide care if not well understood.

Shift the focus – live the best life possible.

Dementia Palliare – positive integrated practice approach to support the person with advanced dementia, who is not yet requiring end of life care.

Dementia Palliare is about achieving best practice and delivering the highest possible quality of advanced dementia care.


A new narrative


What we learned from 22 case studies, 7 countries

Experiences of the quality of advanced dementia care are influenced by:-

• Continuity of evidence - informed care planning• Practice model and dementia friendly environment• Availability of dementia skilled to expert practitioners • Practice focus on comfort, safety, rest and sleep• Opportunities for social connections and meaningful dignified activities• Communication between staff and family• Family sense of support and opportunities to feel in partnership with staff.

Policy Analysis- How well are we doing?

Scotland’s National Dementia Strategy: 2013-16Implementation of the Standards of Care for Dementia Promoting Excellence Framework Dementia Champions Commitment 11

2 (Scotland, Finland) out of 7 of our partner counties have national dementia action plans- and further 3 (Czech Republic, Slovenia and Portugal) are developing plans

Our policies are shaping up but what is it like on the ground?

Educational Perspectives


Advanced Dementia Education: Gap Analysis

Very limited provision of education to equip practitioners to deliver high quality advanced dementia care- to address this, we need:-

• to understand the evidence base for best practice

• an advanced dementia practice model • practitioner education to strengthen

‘Palliare care confidence and capability’• tailored family carer education


How we address this gap? Dementia Palliare resources

• European Best Practice Statement (BPS) • Dementia Palliare: Community of Practice • Dementia Palliare Modules


Practice approach• Framed around a biopsychosocial and spiritual approach to practice

• Recognises complexity of dementia related healthcare needs & evidence informed practice

• Pays careful attention to the attention of the living environment and the relationships between the recipient of care, family carers and practitioners


European Best Practice Statement: six sections

• Protecting rights, dignity and inclusion

• Future planning• Managing symptoms

and keeping well

• Living the best life possible

• Support for family and friends

• Advancing Dementia Palliare practice


Areas of care integral to providing high quality care to people with advanced dementia

European Best Practice Statement: six sections

• The statement and practitioner role (what)• Reason for statement (why)• How to demonstrate achievement in practice (how)• Key points and key challenges


Virtual Community of Practice• Networking• Shared Learning• Information exchange• Digital skills• Please join us and share with

colleagues

http://dementia.uws.ac.uk


Experience Based EducationPalliare Modules

• Positive practice development in advanced dementia care (UG)• Rights, risks and ethical practice in advanced dementia care (PG)• Contemporary inter-professional advanced dementia care (PG)• Achieving change in advanced dementia care (PG)


Thank you

Professor Debbie Tolson Email: [email protected]

Alzheimer Scotland Centre for Policy and Practice

Healthcare

Debbie Tolson