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, well-intentioned 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 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 “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… 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 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 “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.”

Antidotes to Fear 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 “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?? DrAlPower@gmail.com www.alpower.net