Transcript Friendly fire: Dominant paradigms that erode human rights Al Power

Friendly Fire:
Dominant Paradigms that
Erode Human Rights
G. Allen Power, MD, FACP
Alzheimer’s NZ / ADI Asia-Pacific Conference
Wellington, NZ
4 November, 2016
Remarkable Quote #1
“Oppressive and discriminatory practices often
have their foothold in the well-meaning, wellintentioned ideas of those least intending to do
harm.”
Bartlett & O’Connor (2010)
Remarkable Quote #2
“Much of what we call ‘person-centred care’ is
simply bossing people around in a very
individualised way.”
Daniella Greenwood
Strategy and Innovation Manager
Arcare Australia
Underpinnings of a New Approach
to Dementia
• Seeing dementia as a shift in how one experiences the world
• Following a ‘different ability’ framework
• Primary focus on enhancing domains of well-being
• Transforming the living environment (relational, operational and
structural aspects)
The “experiential model” leads us to
challenge common assumptions around
care and support
This is not about bad people! It is about systemic
and paradigmatic barriers to well-being, similar to
what we have seen in institutional aged care.
Three Common Paradigms that
Erode Human Rights
1) The BPSD Framework
2) “Nonpharmacological interventions”
3) Segregated living environments
Provocative Statement #1
The BPSD framework may be the
biggest barrier to our efforts to
eliminate the inappropriate use of
psychotropic drugs.
The Problem with BPSD
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Relegates people’s expressions to brain disease
Ignores relational, environmental, and historical factors
Pathologises normal expressions
Uses flawed systems of categorisation
Creates a slippery slope to drug use
Does not explain how drug use has been successfully eliminated in
many aged care homes
• Misapplies psychiatric labels, such as psychosis, delusions and
hallucinations
• Has led to inappropriate drug approvals in some countries
Shifting Paradigms
How would you respond if you were told:
• “90% of people living with dementia will experience a
BPSD during the course of their illness.”
VS
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“90% of people living will dementia will find
themselves in a situation in which their well-being is
not adequately supported.”
Personal Expressions May
Represent…
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Unmet needs
New communication pathways
New methods of interpreting and problem solving
Response to physical or relational aspects of environment
May be perfectly normal responses, considering the
circumstances!
• May not even represent distress! (“Whose problem is it?”)
Provocative Statement #2:
Why “Nonpharmacological Interventions”
Don’t Work!
The typical “nonpharmacological intervention” is an attempt to
provide person-centred care with an institutional mindset
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Reactive, not proactive
Discrete activities, often without underlying meaning for the individual
Not person-directed
Not tied into domains of well-being
Treated like doses of pills
Superimposed upon the usual care environment
Provocative Statement #3
If a Dementia-Friendly Community can be
defined as a community that seeks to
include and positively engage those who
live with dementia, then the aged care
sector is on track to become the most
dementia-unfriendly part of our society.
Is This the Biggest Misconception
in Aged Care??
• Over 100 causes of dementia
• Many variations and levels of ability
• Many personal histories, strengths, coping skills
• Many cultures
• Over 47 million people worldwide
but…
“One size fits all” housing and care???
Questions for You
• If you are diagnosed with dementia, do you want to live the
rest of your life in a place that only has other people with
dementia living there?
• Would you ever want to live in:
- The Care Home for People with High Blood Pressure?
- The Care Home for Former Aged Care Administrators?
- The Care Home for____ (a Certain Race, Religion, Ethnicity)?
- The Care Home for People Who Had the Same School Exam Scores?
• Would such a place treat you like more, or less of a unique
individual?
• Do you think that having segregated living makes other
residents’ and families’ fear and stigma greater or less?
Clinical Outcomes
‘There are no identified RCTs investigating the effects of
SCUs on behavioural symptoms in dementia, and no
strong evidence of benefit from the available non-RCTs. It
is probably more important to implement best practice
than to provide a specialised care environment.’
- Cochrane Review 2012
(http://www.cochrane.org/CD006470/)
Value of Diversity
• Sabat (2001): Being with healthy others creates ‘positive social
personae’
• Caring roles for cognitively-able people
• Dangers of concentrating people with compromised stress
thresholds, coping mechanisms and verbal skills
• Universal physical design preserves well-being through one’s
changing physical and cognitive abilities
But Most Important:
Civil Rights
• Who else, besides convicted felons, is barred from living
around others in aged care?
• Visualisation
Antidotes to Fear
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Education
Destigmatisation
Relationship and deep knowing
Well-communicated, value-based organisational
philosophy
• Enlightened practises that facilitate well-being for all
One Last Question…
If segregated ‘memory care’ is so desirable,
why is there an international movement to
create inclusion in our larger communities?
“People talk about person-centred care. But if the view
of the person doesn't change, then centring on them
actually makes it worse.”
- Richard H. Taylor, PhD
Thank you!!
Questions??
[email protected]
www.alpower.net