Staff, Members’ & Volunteers’

Conference & Awards Ceremony

“It takes extraordinary people to help people

with dementia do ordinary things”

Developing an Advanced Illness

Model

Lindsay Kinnaird, Research Manager

‒ 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

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

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

“ 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

‒ 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

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

‒ 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

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

‒ 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?

Developing the 8 Pillars Model for advanced

dementia?

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?

Ideas for taking „Advanced Dementia

Consultation‟ into your locality?

Staff, Members’ & Volunteers’

Conference & Awards Ceremony

“It takes extraordinary people to help people

with dementia do ordinary things”

Alzheimer Scotland Policy Update

Amy Dalrymple

Head of Policy, Alzheimer Scotland

‒ Delivering the individual aspirations of people living with

dementia

‒ Redesigning services across whole system of care

Public Policy – Transformational Change

‒ Human Rights Based approach

‒ Involvement

‒ Evidence informed

‒ Partnership working

‒ Stakeholder management

‒ Contributing Organisation

‒ Offering Solutions

Public Policy - Approach

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

Getting it right throughout dementia journey:

Post Diagnostic Support

Alzheimer

Scotland

Five Pillars model

of post diagnostic

support

‒ Linking 5 and 8 pillars

Getting it right throughout the dementia

journey

The

Alzheimer

Scotland

Eight

Pillars

model of

Community

Support: an integrated

health and social

care model of

support for

people with

dementia

Testing the Eight Pillars

model

The test sites

Moray

Glasgow City

Highland

North

Lanarkshire

Midlothian

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

‒ Outcomes, person centred

‒ Quantitative data reporting

‒ Qualitative data gathering

How we are learning from the tests

‒ 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

‒ 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

‒ 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

‒ 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

‒ 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_Comm

unity_Support.pdf

Links and references

Staff, Members’ & Volunteers’

Conference & Awards Ceremony

“It takes extraordinary people to help people

with dementia do ordinary things”