Transcript personal expressions, actions and reactions

Expanding Possibilities through a
Social Model of Dementia
Jennifer Carson, PhD, Chief Learning Officer
Downstream
How does the
fable relate to
how healthcare
providers
commonly
provide care and
support to
persons living
with dementia?
Upstream
Opening Fable – Upstream/Downstream
Pathways to Living Well Upstream
1. View dementia from a social/relational vs. biomedical paradigm
2. Understand personal expressions, actions and reactions as a
means of communicating identity, needs and preferences
3. Make decisions with vs. for persons living with dementia
4. Focus on well-being vs. interventions and discrete programs
vs. Biomedical View
Downstream
Upstream
Pathway 1: Social/Relational View
Biomedical View
Dementia is tragic, progressive and fatal
Focus on care treatments, interventions and
discrete programs
Caregivers make decisions (decisions for)
Behaviors are problems to be managed or
treated through pharmacological and/or
non-pharmacological interventions
Social/Relational View
“Dementia is a shift in perception and
experience of the world” (Power, 2014)
Focus on supporting well-being and living
life
Care partners support decision making
(decisions with)
Personal expressions, actions and reactions
are a means of communicating identity,
needs and preferences
Activities should be structured, stageappropriate and failure-free
Leisure is a fundamental human right and
freely accessible opportunities should focus
on what is personally meaningful, including
opportunities for continued growth
Persons suffering from dementia fade away
Persons living with dementia continue to
grow
“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, p. 53)
“We are, I believe, disabled as a
consequence of misconceptions
of dementia and of the fears
these misconceptions create.”
(Richard Taylor, Advocate, Author and
Person Living with Dementia)
Consequences of Biomedical View
• Shapes how persons living with dementia and their actions are judged
• Impacts how the person is treated – labeled, stigmatized
• Limits choices and opportunities available, resulting in social inequality
• Fails to recognize, and limit, the contributions persons living with
dementia can make in their own lives and the lives of others
• Results in persons living with dementia feeling ignored, silenced,
overlooked, and overprotected
• Influences how persons living with dementia view themselves and
their lives
(Dupuis, 2011)
Stop “Prescribed Disengagement”
vs. Behaviors
Downstream
Upstream
Pathway 2: Personal Expressions
(Mis-)Understandings of Dementia
• Behavioral and Psychosocial
Symptoms of Dementia
• Basic Personal Signs of
Distress (Bryden, 2015)
• BPSOD: Behavioral and
Psychological Symptoms of
the Over-Medicalization of
Dementia (Power, 2015)
vs. Decisions For
Downstream
Upstream
Pathway 3: Decisions With
Call for Care Partnerships
“…We need to move away from labeling
ourselves as care-giver and sufferer,
towards becoming a care-partnership, in
which we accept, collaborate, and adapt
to new roles within the journey of
dementia … In this care-partnership, the
person with dementia is at the center of
the relationship, not alone as an object to
be looked at, as merely a care recipient.
Instead, we become an active partner in
a circle of care.”
Christine Bryden
Dancing with Dementia: My Story of
Living Positively with Dementia (2005)
Authentic Partnerships
Actively incorporate and value
diverse perspectives and include
all stakeholders (care partners)
directly in decision making,
including persons living with
dementia
Dupuis, S.L., Gillies, J., Carson, J., Whyte, C., Genoe,
R., Loiselle, L., & Sadler, L. (2011). Moving beyond
patient and client approaches: Mobilizing authentic
partnerships in dementia care. Dementia.
vs. Interventions
Downstream
Upstream
Pathway 4: Focus on Well-Being
Nonpharmacological Interventions Do Not Work!
The typical “nonpharmacological
intervention” is an attempt to provide
person-centered care with a biomedical
mindset:
• Reactive, not proactive (downstream!)
• Discrete activities, often without underlying
meaning for the individual
• Not person-directed
• Treated like doses of pills
• Superimposed upon the usual care environment
One View of Well-Being
•
•
•
•
•
•
•
Identity
Connectedness
Security
Autonomy
Meaning
Growth
Joy
Adapted from Fox, et al. (2005 white paper);
now “The Eden Alternative Domains of Well-Being™”
Power’s Suggested Well-Being Hierarchy
MAREP’s
Living and
Celebrating
Life through
Leisure
Team
(Dupuis, Whyte,
Carson, et al.,
2012)
True Expert – ‘Expert’ Alignment
Being Me
Identity
Being With
Connectedness
Seeking Freedom
Autonomy
Finding Balance
Security
Making a Difference
Meaning
Growing and Developing
Growth
Having Fun
Joy
Benefits of Focusing on Well-Being
(Power, 2014)
• Sees the illness within the context of the whole person
• Depathologizes personal expressions, actions and reactions
• Recognizes the power of historical, environmental and relational
contexts
• Focuses on achievable, life-affirming goals
• Brings important new insights
• Helps eliminate antipsychotic drug use and other interventions
• Is proactive and strengths-based
Pathways to Living Well Upstream
1. View dementia from a social/relational vs. biomedical paradigm
2. Understand personal expressions, actions and reactions as a
means of communicating identity, needs and preferences
3. Make decisions with vs. for persons living with dementia
4. Focus on well-being vs. interventions and discrete programs
Toward a Social Citizenship Approach
(Bartlett and O’Connor, 2010)
1. Active participation by people living with dementia in their own
lives and society at large
2. Potential for growth and positivity within the dementia
experience
3. Individual experiences understood as connected to broader
sociopoilitical and cultural dynamics and structures
4. Solidarity between people living with dementia
Thank you!
For more information:
Jennifer Carson, PhD
Chief Learning Officer
[email protected]