The document discusses the development of an advanced illness model for dementia care. It outlines Lindsay Kinnaird's presentation on developing an 8 pillars model of community support for moderate dementia and introducing a consultation process on an advanced dementia model. The presentation will cover factors that influence the lived experience of dementia, principles of care, and the evidence base. It seeks input on key issues in advanced dementia and ideas for taking the consultation into local areas.

1. Staff, Members’ & Volunteers’
Conference & Awards Ceremony
“It takes extraordinary people to help people
with dementia do ordinary things”

2. Developing an Advanced Illness
Model
Lindsay Kinnaird, Research Manager

3. ‒ Outline development of 8 pillars model of community support for
people living with moderate dementia
‒ Set out key issues in advanced dementia
‒ Introduce consultation process on advanced dementia model
‒ Discussion on some of the consultation questions
‒ Ideas for taking consultation into your locality
Presentation will cover

4. Kitwood (1990) the interplay of five factors:
(1) personality (resources for action) +
(2) biography +
(3) health +
(4) neurological impairment +
(5) social psychology =
The lived experience of dementia
Development of 8 Pillars Model: Understanding
the lived experience of dementia

5. Spector & Orrell (2010) bio-psychosocial model of dementia:
‒ Approach to identifying factors that may lead to improvement or
deterioration in the person
‒ To identify fixed factors (not amenable to change) and tractable factors (may
be amenable to change)
‒ Both fixed and tractable factors influence experience of dementia and
nature of progression
‒ Presents dementia as “malleable” with “change, adaptation and
improvement possible”
Development of 8 Pillars Model: Understanding
the lived experience of dementia

6. “ A person with dementia remains the same equally
valuable person throughout the duration of their illness
embodied in their own physical being and held within the
network of their relationships” (Nuffield Council on
Bioethics 2009)
Responses of others of key importance:
‒ excess disability (Brody 1971)
‒ malignant social psychology (Kitwood 1990)
Developing the 8 Pillars Model: Principles and
approach to care

7. ‒ The lived experience of dementia is influenced by a range of factors
unique to each individual
‒ Each factor influences every other factor and impacts on the overall
health and wellbeing of those living with dementia
‒ Living with dementia encompasses those closest to the person with
the diagnosis
‒ 8 Pillars Model takes a rights based approach to supporting quality
of life and independence and building resilience
Development of 8 Pillars Model: Bringing this
together

8. Main intervention is human care and treatment,
encompassing range of therapeutic, psychosocial and
psychological treatments
Strongest evidence relates to impact of interventions to
support the family caregiver
A need to continue to develop and understand best
approaches to supporting people living with dementia
Development of 8 Pillars Model: understanding
the evidence base

9. ‒ Intensive and complex
‒ Experienced in a physical way
‒ Individual experience will vary according to range of factors unique
to each person including influence of co-morbid conditions
‒ Many of the distinctions between different types of dementia
diminish as a result of the impact of progressed illness
‒ Experience of dying with dementia highly variable
Advanced dementia

10. Consultation with key stakeholders (2014/15):
‒ Inform our understanding of the experience of advanced dementia
‒ Identify what responses are required
‒ Determine what principles and approaches to care should underpin
the advanced illness model
Report to be published (Autumn 2015)
Working towards influencing the Scottish Dementia Strategy (2016)
Advanced dementia

11. ‒ Moderately advanced dementia: the person begins to experience
more intensive, and possibly a greater number of symptoms than before.
The need for support and care increases and the person will require
continuous support.
‒ Advanced dementia: the type and level of symptoms and the person‟s
experience shows that they are clearly experiencing advanced illness. The
person will require intensive support.
‒ End of life: just as the lived experience of dementia varies considerably
between individuals, so does the experience of dying with dementia.
Are these three stages helpful in breaking
down the transitions in advanced dementia?

12. Developing the 8 Pillars Model for advanced
dementia?

13. What factors do we need to respond to for
people living with advanced dementia?
‒ Understanding of who is living with
advanced dementia and the support
they require (person, family member,
carers)
‒ Understanding issues and approaches
to communication
‒ Approaches to connecting to the
person with advanced dementia
‒ Environment
‒ Ethical approaches & dignity
‒ Awareness of spiritual needs
‒ Anticipatory care planning & decision
making
‒ Physical health care and wellbeing
‒ Management of pain
‒ Falls reduction
‒ Nutritional support
‒ Mental health care and wellbeing
‒ Responses to under-treatment and
over-treatment
‒ …And?

14. Ideas for taking „Advanced Dementia
Consultation‟ into your locality?

15. Staff, Members’ & Volunteers’
Conference & Awards Ceremony
“It takes extraordinary people to help people
with dementia do ordinary things”

16. Alzheimer Scotland Policy Update
Amy Dalrymple
Head of Policy, Alzheimer Scotland

17. ‒Delivering the individual aspirations of people living with dementia
‒Redesigning services across whole system of care
Public Policy – Transformational Change

18. ‒Human Rights Based approach
‒Involvement
‒Evidence informed
‒Partnership working
‒Stakeholder management
‒Contributing Organisation
‒Offering Solutions
Public Policy - Approach

19. Post diagnostic support
Integrated & coordinated community support
Advanced dementia & End of life care
Vision – Transforming lives
Diagnosis Rates & Experience
Promoting earlier
diagnosis
Improvements in healthcare
Dementia friendly communities & dementia friends

20. Getting it right throughout dementia journey: Post Diagnostic Support
Alzheimer Scotland
Five Pillars model of post diagnostic support

21. ‒Linking 5 and 8 pillars
Getting it right throughout the dementia journey

22. The Alzheimer Scotland Eight Pillars model of Community Support:
an integrated health and social care model of support for people with dementia

23. Testing the Eight Pillars model

24. The test sites
Moray
Glasgow City
Highland
North Lanarkshire
Midlothian

25. To improve the experience, safety and coordination of care for people with dementia and their carers in identified test sites by January 2016, through testing and evaluating a range of approaches to providing better integrated care and support using 8 pillars
‒People with dementia, their carers and staff feel supported
‒People with dementia, their carers and staff feel safe
‒People with dementia and their carers and staff feel responded to
The test process

26. ‒Outcomes, person centred
‒Quantitative data reporting
‒Qualitative data gathering
How we are learning from the tests

27. ‒Change management required to
coordinate information, data
‒Ongoing nature of Dementia Practice
Coordinator role is a new way of working
‒Approaches around personalised outcomes and point of contact already exist, need to become coordinated and consistent
‒Still at early stage of test process:
•Keep an eye on „Focus on Dementia‟ - http://www.qihub.scot.nhs.uk/quality-and-efficiency/focus-on- dementia.aspx
What we are learning from the tests

28. ‒More people with dementia living a good quality life at home for longer
‒dementia-enabled and dementia-friendly local communities
‒Timely, accurate diagnosis
‒Better post-diagnostic support
‒People with dementia and their families and carers as equal partners in care
‒Better respect and promotion of rights in all settings, with improved compliance with the legal requirements in treatment
‒People with dementia in hospitals or other institutional settings always being treated with dignity and respect
National Dementia Strategy 2013(16)
Key Outcomes

29. ‒Advanced Dementia/End of life model
‒Allied Health Professional – Policy Report
‒Glasgow Declaration (Alzheimer Europe Conference)
‒Dementia Friends
‒Early diagnosis campaign
Current Public Policy developments

30. ‒Sharing the vision
•Policy into practice
‒Capturing lived experience
•Stories
•Narrative
•Local involvement
‒Information sharing
•Public policy updates
•Meet the policy team
Public Policy – Everybody’s Business

31. ‒Charter of Rights: http://www.alzscot.org/assets/0000/2678/Charter_of_Rights.pdf
‒Eight Pillars Model of Community Support report: http://www.alzscot.org/assets/0000/4613/FULL_REPORT_8_Pillars_Model_of_Community_Support.pdf
Links and references

32. Staff, Members’ & Volunteers’
Conference & Awards Ceremony
“It takes extraordinary people to help people
with dementia do ordinary things”