Dementia Beyond Drugs:Dementia Beyond Drugs:Changing the Culture of CareChanging the Culture of Care

G. Allen Power, MD, FACPG. Allen Power, MD, FACP

St. John’s Home, Rochester, NY, USASt. John’s Home, Rochester, NY, USA

Alzheimer’s Disease InternationalAlzheimer’s Disease International

27 March, 201127 March, 2011

Objective:Objective:

To change your minds about people To change your minds about people whose minds have changedwhose minds have changed

PerspectivesPerspectives

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

The ProblemThe Problem

The prevalence of dementia is rising rapidlyThe prevalence of dementia is rising rapidly

There is no available means of arresting or reversing the There is no available means of arresting or reversing the illnessillness

Millions of people with dementia suffer distress and Millions of people with dementia suffer distress and eroded well-beingeroded well-being

All available medications for distress are largely All available medications for distress are largely ineffective and potentially dangerousineffective and potentially dangerous

A Crisis in A Crisis in CareCare

Most distress arises from unmet needs or inability to Most distress arises from unmet needs or inability to succeed in the care environmentsucceed in the care environment

Care environments are designed around the needs of Care environments are designed around the needs of the carers, rather than those with dementiathe carers, rather than those with dementia

Behavioural distress is seen as a Behavioural distress is seen as a problemproblem, resulting from , resulting from a a diseased minddiseased mind

Distress is addressed with medications and/or brief Distress is addressed with medications and/or brief interventions, with little attention to the care environmentinterventions, with little attention to the care environment

““Two Roads Diverge…”Two Roads Diverge…”

““People with dementia will continue to suffer until People with dementia will continue to suffer until effective treatments can be discovered, and effective treatments can be discovered, and development of such drugs should be pursued development of such drugs should be pursued with all urgency.”with all urgency.”

OROR

““Our approach to care is seriously flawed, and a Our approach to care is seriously flawed, and a new model must be pursued with the same new model must be pursued with the same urgency as drug research.”urgency as drug research.”

Moving Beyond Moving Beyond the the

“Pill Paradigm”“Pill Paradigm”

A New Definition…A New Definition…

““Dementia is a shift in the way Dementia is a shift in the way a person experiences the a person experiences the

world around her/him.”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 careDiverse engagement

Focus of care

Tasks and treatments Less attention to care environment

RelationshipsCare environment is critical

Staff / family role “Caregiver” “Care partner”

Biomedical Model

Experiential Model

View of behaviour

Confused, purposelessDriven by disease and neurochemistry

Attempts to cope, problem-solve and communicate needs

Response to behaviour

“Problem” to be “managed”Medication, restraint

Care environment inadequateConform environment to person

Behavioral goals“Normalise” behaviourMeet needs of staff and families

Satisfy unmet needsFocus on individual perspective

Nonpharmacologic approaches

Focus on discrete interventions

Focus on transforming care environment

Overall result

High use of medsContinued sufferingDecreased well- being

Rare use of medsAttention to spiritual & emotional needsImproved well-being

Does cough syrup Does cough syrup cure pneumonia?cure pneumonia?

Behavioural Behavioural expressions are the expressions are the symptom, symptom, not thenot the

problem!problem!

Primary Goal:Primary Goal:CreateCreate Well-beingWell-being

Identity Identity GrowthGrowth AutonomyAutonomy SecuritySecurity ConnectednessConnectedness MeaningMeaning JoyJoy “ “Wandering” example…Wandering” example…

Transformational Models of CareTransformational Models of Care

True Stories…True Stories…

Perspectives Perspectives

““When the facts change,When the facts change,

I change my mind.I change my mind.

What do What do you do, Sir?”you do, Sir?”

- John Maynard Keynes- John Maynard Keynes

Thank you!Thank you!Questions?Questions?

apower@stjohnsliving.orgapower@stjohnsliving.org585-760-2639585-760-2639

www.alpower.netwww.alpower.net