This document discusses improving care for people with advanced dementia. It proposes a model called PALLIARE that focuses on counseling, support, timely interventions and decisions, and meaningful activities. PALLIARE aims to provide the best possible care for those with the greatest needs through co-produced, individualized, evidence-based approaches and compassionate care. The document reviews research on advanced dementia care and outlines best practice guidelines covering rights, future planning, managing symptoms, quality of life, family support, and advancing palliative dementia care practices. It notes high rates of antipsychotic and sedative drug use in nursing homes and the need to enhance sensory care and listen to those with advanced dementia.

1. Alzheimer Scotland Centre for Policy and Practice
Advanced Dementia:
Time for Palliare
Professor Debbie Tolson
Professor Iva Holmerová

2. Talk Plan

5. ´Pre-clinical AD MCI
Dementia syndrome
ČALS Strategy P-PA-IA
I- mild II-moderate III- advanced terminal
PALLIARE
Counselling
Support
Timely therapy
Timely
decisions…
Programme
Meaningful activities
Psychosocial
interventions….
Individualised assistance
Skilled nursing care
Palliative care…..

6. Prudent Healthcare Perspective
Tolson, D., Fleming, A., Hanson, E., Abreu, W., Lillo Crespo, M., Macrae, R., Jackson, G., Hvalic-Touzery, Routasola, P. & Holmerova, I. (2016) Achieving Prudent
Dementia Care (Palliare): An International Policy and Practice Imperative. International Journal of Integrated Care, 16 (4), 18, 1–11, DOI:
http://dx.doi.org/10.5334/ijic.2497.
“….By starting with questions about what people with dementia and family carers want it may be possible to imagine
new integrated services within the family home, and housing alternatives with integrated care. Such a new starting
point might be more helpful than simply trying to make small scale changes or repairs to what already exists but is
known to be inadequate…..”
Key Principle: To provide the best possible care to those with the greatest
healthcare need first.
“..Requires co-production, individualised approaches, evidence informed care decisions, avoidance of care that is not
wanted or is not of benefit, delivery with compassion and the right expertise at the right time…”

7. • Tolson D, Holmerova I, Macrae R, Waugh A, Hvalic-Touzery S, de Abreu W, Lillo Crespo M, Merta A, Hanson E.(in press) Improving Advanced Dementia Care an Interprofessional
Learning Framework JAMDA http://dx.doi.org/10.1016/j.jamda.2017.03.014
• Tolson, D., Fleming, A., Hanson, E., Abreu, W., Lillo Crespo, M., Macrae, R., Jackson, G., Hvalic-Touzery, Routasola, P. & Holmerova, I. (2016) Achieving Prudent Dementia Care
(Palliare): An International Policy and Practice Imperative. International Journal of Integrated Care, 16 (4), 18, 1–11, DOI: http://dx.doi.org/10.5334/ijic.2497.
• Hanson, E., Hellstrom, A., Sandvide, A., Jackson, GA., Macrae, R., Waugh, A. Abreu, W. & Tolson, D. (2016). The extended palliative phase of dementia – an integrative literature
review. Dementia DOI: 10:1177/1471301216659797.
Dementia Palliare 2014-2016
http://www.uws.ac.uk/palliareproject/

8. Best Practice Statement
http://www.uws.ac.uk/palliareproject/
• Informed by in-depth case studies, literature and policy reviews
• For health and social care practitioners supporting people with advanced dementia,
their family and friends.
• To inspire new positive ways to talk about advanced dementia practice, helping
practitioners (doctors, nurses, allied health and social care) to imagine new and
better approaches to practice and lead service reforms.

9.  Areas of care integral to
providing high quality care to
people with advanced dementia
BPS: 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

10. Why we need PALLIARE ?
Prevalence of Dementia CZ 2013:
Senior homes 67% (17% advanced)
Special homes 91% (47% advanced)

11. AND…..CZ:
Antipsychotic use in NH
for seniors
(Holmerova, Rusina et al. 2014)
• Currently new quantitative and qualitative data collection:
• Austrian-Czech Long-term Care Project FWF-GACR DEMDATA
Antipsychotics 316 44%
Benzodiazepines 132 18%
Hypnotics 74 10%
Obsolete drugs with sedative effect 30 4%
Without sedative drugs 174 24%
Total 726 100%

12. Our Research &
Innovation Efforts:

13. Joyfull Food in Long-Term Care

14. Committed to listening to the quiet voices
Enhance Sensory
Care

15. Help Us Deliver Palliare
Alzheimer Scotland Centre for Policy and Practice
Czech Austrian Long-Term Care Project GAČR
No: GF16-34873L

16. Alzheimer Scotland Centre
for Policy and Practice