‘Just Dance with Me’The Power of

Relationships in

LIVINGSherry L. Dupuis, Ph.D.

Professor and Co-DirectorPartnerships in Dementia Care Alliance

In nursing homes, assisted living

facilities and adult day programs we

supply our elders with the necessities

of survival, but they are too often

deprived of the necessities of LIVING

(Fagan, 2003, p. 127)

Being

MeBeing

With

Having

Fun

Growing and

Developing

Making a

Difference

Seeking

Freedom

Finding

Balance

Being

Me

Being

With

Seeking

Freedom

Finding

Balance

Making

a

Difference

Growing

&

Developing

Having

Fun

Personal Reflection

• What would YOU need to LIVE well – to flourish – with dementia?

• Use the post-it notes on your table to write down what you would need to have a good life with dementia

• Post your ideas in the centre of your table

“Many think it is the disease that causes us to withdraw, and to some extent I believe this is true. But, for many of us, we withdraw because we are not provided with meaningful opportunities that allow us to continue to experience joy, purpose, and engagement in life.”

Person living with Dementia

Researchers in Collective Disruption

Sherry Dupuis, Christine Jonas-Simpson, Julia Gray, Gail Mitchell, and Pia Kontos

Ideas/Values

Time

Space/Physical Environment

People

Animals/Other Living Beings

Higher Being(s)

ObjectsOur Bodies

ExperiencesIN

Relationship

Relational Context

L

TeamMembers

WorkplacePractices

Local Community

Political System

Adapted HATCh Model, Quality Partners of Rhode Island (2006)

Immediate Environment

https://www.youtube.com/watch?v=-HA8MFfl5z0

L

TeamMembers

WorkplacePractices

Local Community

Political System

Adapted HATCh Model, Quality Partners of Rhode Island (2006)

Immediate Environment

Small Group Reflection #1• On your tables, locate the handout entitled ‘Small

Group Reflection #1’

• Choose a note taker

• Together identify and document specific threats to LIVING for persons with dementia that you know of or have witnessed/experienced at different relational layers (i.e., individual, organisational, community, political, broader cultural)

• After 10 minutes, we will share some examples with the larger group

Individual Layer Threats to LIVING

• Assumptions/misunderstandings

• Task focus

• Focus on disease, symptoms and bodies

• Attitudes “it’s not my job”

• Sense of powerlessness

Organisational Layer Threats to LIVING• A risk averse culture

• Focus on routines and structured activities

• Care practices that prioritise physical care

• No opportunities for relationship building

• Institutional physical environments

• Traditional organisational structures

• Reliance on quality indicators misaligned with supporting LIVING

Community Threats to LIVING

• Community prejudice

–Ageism

– Stigma

– Fear

• Lack of meaningful activities and opportunities in the community

• Lack of access to community programs and services

• Unwelcoming environments

Systemic/Political Layer Threats

• Measurement tools/indicators that focus on deficit, disease and physical care

• Policies misaligned with supporting LIVING

• Compliance officers/regulators with a focus on physical care and clinical treatments

• Lack of incentives for organisations to change

• Funding models that privilege managing bodies over supporting LIVING

Challenging the Culture

https://www.youtube.com/watch?v=saRWpSqQpPA

https://vimeo.com/109648409

https://www.youtube.com/watch?v=hO8MwBZl-Vc

Small Group Reflection #2• On your tables, locate the handout entitled ‘Small

Group Reflection #2’

• Choose a note taker

• Together identify specific things that YOU can do to support LIVING for persons with dementia

What changes would need to happen to support LIVING and how can you work to facilitate those changes?

What possibilities do you envision?

• After 10 minutes, we will share some examples with the larger group

Life is forLIVING

So DANCE

You and me, our life is driftin' along

Watchin' the world as it's singin' its song

High above, someone is callin' to me

Life is for livin' and livin' is free

You to me, are like the sun in the sky

See how you fly, you have wings of your own

You and me, our love will last without end

Ride with the wind, won't you follow me home?

Turn around and see the circles we spin

And we're takin' our chances on where we begin

Up above, the rain is fallin' on me

Life is for livin' and livin' is free

You to me, are like the sun in the sky

See how you fly, you have wings of your own

You and me, our love will last without end

Ride with the wind, won't you follow me home?

Takin' up time tryin' to write a line till the break of day

Given a sign, can you make it rhyme, tell me what to say?

Makin' it fine, can you ease my mind, help me drift away?

Turn around and see the circles we spin

Takin' our chances on where we begin

Up above, the rain is fallin' on me

Life is for livin' and livin' is free

You to me, are like the sun in the sky

See how you fly, you have wings of your own

You and me, our love will last without end

Ride with the wind, won't you follow me home

YOU can do it! WE can do it!Create a relational culture

of LIVING

Thank You!

PartnershipsInDementiaCareAlliance

CrackedonDementia

@pidcalliance

@crackeddementia

Sherry L. Dupuis, Ph.D.sldupuis@uwaterloo.ca

519-888-4567, ext. 36188

http://www.uwaterloo.ca/pidc

Life is for Livin’ by Barclay James Harvest from the Album Turn of the Tide (1981)

References

Dupuis, S.L., Whyte, C., Carson, J., Genoe, R., Meschino, L. & Sadler, L. (2012). Just dance with me: An

authentic partnership approach in understanding leisure in the dementia context. Special issue on Leisure, Health and Disability of World Leisure Journal, 54(3), 240-254.

Dupuis, S.L., Gillies, J., Carson, J., Whyte, C., Genoe, R., Loiselle, L., & Sadler, L. (2012). Moving beyond ‘patient’ and ‘client’ approaches: Mobilising authentic partnerships in dementia care. Dementia, 11(4), 428-450.

Dupuis, S.L., McAiney, C., Fortune, D., Ploeg, J., & deWitt, L. (2014). Theoretical foundations guiding culture change: The work of the Partners in Dementia Care Alliance. Dementia. doi:10.1177/1471301213518935

Dupuis. S.L. (2015, October). From “challenging behaviours” to relational understandings of personal expressions. Invited keynote at the 26th Provincial Conference of the Alzheimer Society of Nova Scotia: Shifting focus in dementia care. Halifax, Nova Scotia, Canada.

Dupuis, S.L. (2016, January). Relational understandings of personal expressions. Invited Webinar for BrainXChange.

Fagan, R. (2003). The Pioneer Network : Changing the culture of aging in America. Journal of Social Work in Long-Term Care. 2(1/2), 125-140.Quality Partners of Rhode Island. (2006). The holistic approach to transformational change. Nursing Home

Quality Improvement Support Centre.Swaffer, K. (2014). Australian Journal of Dementia Care. Retrieved from:

http://journalofdementiacare.com/reinvesting-in-life-is-the-best-prescription/.