1. 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

2. Remarkable Quote #1
“Oppressive and discriminatory practices often have their foothold in the well-meaning, well-intentioned ideas of those least intending to do harm.” Bartlett & O’Connor (2010)

3. 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

4. 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)

5. 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.

6. Three Common Paradigms that Erode Human Rights
1) The BPSD Framework
2) “Nonpharmacological interventions”
3) Segregated living environments

7. Provocative Statement #1
The BPSD framework may be the biggest barrier to our efforts to eliminate the inappropriate use of psychotropic drugs.

8. The Problem with BPSD 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

9. 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
“90% of people living will dementia will find themselves in a situation in which their well-being is not adequately supported.”

10. Personal Expressions May Represent…
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?”)

11. 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
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

12. 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.

13. 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???

14. 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?

15. 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 (

16. 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

17. But Most Important: Civil Rights
Who else, besides convicted felons, is barred from living around others in aged care?
Visualisation
“Others do not like having them in the same living area. They frighten the other residents, and their families complain. We find it’s better to move them so that they can live separately.
They need different activities, a different living environment, and a different approach to care. They won’t bother each other as much as they bother other people. They will be much happier
if they are around people of their own kind.”

18. Antidotes to Fear Education Destigmatisation
Relationship and deep knowing
Well-communicated, value-based organisational philosophy
Enlightened practises that facilitate well-being for all

19. One Last Question…
If segregated ‘memory care’ is so desirable, why is there an international movement to create inclusion in our larger communities?

20. “People talk about person-centred care
“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

21. Thank you!! Questions?? DrAlPower@gmail.com www.alpower.net