Expanding Possibilities through a Social Model of Dementia Jennifer Carson, PhD, Chief Learning Officer

Opening Fable – Upstream/Downstream Upstream Downstream How does the fable relate to how healthcare providers commonly provide care and support to persons living with dementia?

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

Pathway 1: Social/Relational View Upstream Downstream vs. Biomedical 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 Activities should be structured, stage- appropriate and failure-free Persons suffering from dementia fade away 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 Leisure is a fundamental human right and freely accessible opportunities should focus on what is personally meaningful, including opportunities for continued growth 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”

Pathway 2: Personal Expressions Upstream Downstream vs. Behaviors

(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)

Pathway 3: Decisions With Upstream Downstream vs. Decisions For

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.

Pathway 4: Focus on Well-Being Upstream Downstream vs. Interventions

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 MeIdentity Being WithConnectedness Seeking FreedomAutonomy Finding BalanceSecurity Making a DifferenceMeaning Growing and DevelopingGrowth Having FunJoy

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 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 (Bartlett and O’Connor, 2010)

For more information: Jennifer Carson, PhD Chief Learning Officer Thank you!