Dementia Beyond Drugs: Changing the Culture of Care G. Allen Power, MD, FACP St. John’s Home, Rochester, NY, USA Alzheimer’s Disease International 27 March, 2011

Objective:  To change your minds about people whose minds have changed

Perspectives “The only true voyage of discovery...would be not to visit strange lands, but to possess other eyes, to behold the universe through the eyes of another, of a hundred others, to behold the hundred universes that each of them beholds, that each of them is...” - Marcel Proust

The Problem  The prevalence of dementia is rising rapidly  There is no available means of arresting or reversing the illness  Millions of people with dementia suffer distress and eroded well-being  All available medications for distress are largely ineffective and potentially dangerous

A Crisis in Care  Most distress arises from unmet needs or inability to succeed in the care environment  Care environments are designed around the needs of the carers, rather than those with dementia  Behavioural distress is seen as a problem, resulting from a diseased mind  Distress is addressed with medications and/or brief interventions, with little attention to the care environment

“Two Roads Diverge…”  “People with dementia will continue to suffer until effective treatments can be discovered, and development of such drugs should be pursued with all urgency.” OR OR  “Our approach to care is seriously flawed, and a new model must be pursued with the same urgency as drug research.”

Moving Beyond the “Pill Paradigm”

A New Definition… “Dementia is a shift in the way a person experiences the world around her/him.”

Biomedical Model Experiential Model Dementia defined Progressive, irreversible, fatal Shift in perception of world Brain function Loss of neurons and cognition Brain plastic, learning can occur View of dementia Tragic, costly, burdensome Continued potential for life and growth Research goals Almost entirely focused on prevention and cure Also need to improve the lives of those with dementia Environmental goals Protection, isolation, disempowerment Maintain well-being and autonomy

Biomedical Model Experiential Model Environmental attributes Disease-specific living areas Programmed activities Individualised, person- directed care Diverse engagement Focus of care Tasks and treatments Less attention to care environment Relationships Care environment is critical Staff / family role“Caregiver”“Care partner”

Biomedical Model Experiential Model View of behaviour Confused, purposeless Driven by disease and neurochemistry Attempts to cope, problem-solve and communicate needs Response to behaviour “Problem” to be “managed” Medication, restraint Care environment inadequate Conform environment to person Behavioral goals “Normalise” behaviour Meet needs of staff and families Satisfy unmet needs Focus on individual perspective Nonpharmacologic approaches Focus on discrete interventions Focus on transforming care environment Overall result High use of meds Continued suffering Decreased well- being Rare use of meds Attention to spiritual & emotional needs Improved well-being

Does cough syrup cure pneumonia? Behavioural expressions are the symptom, not the problem!

Primary Goal: Create Well-being  Identity  Growth  Autonomy  Security  Connectedness  Meaning  Joy “Wandering” example… “Wandering” example…

Transformational Models of Care

True Stories…

Perspectives “When the facts change, I change my mind. What do you do, Sir?” - John Maynard Keynes - John Maynard Keynes

Thank you! Questions?