‘Just Dance with Me’ The Power of Relationships in LIVING Sherry L. Dupuis , Ph.D. Professor and Co-Director Partnerships 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 Being Seeking Me With Freedom Finding Balance Making a Difference Growing and Having Developing Fun
Being ing Me Me
Being ing With
Seek eking ing Free eedo dom
Finding ding Balance lance
Making ng a a Diffe ference rence
Growi wing ng & & Develo eloping ping
Having ing 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
Relational Context Space/Physical Environment Our Bodies Objects Experiences Ideas/ Higher IN Values Being(s) Relationship People Time Animals/Other Living Beings
Political System Immediate Environment L Team Members Workplace Practices Local Community Adapted HATCh Model, Quality Partners of Rhode Island (2006)
https://www.youtube.com/watch?v=-HA8MFfl5z0
Political System Immediate Environment L Team Members Workplace Practices Local Community Adapted HATCh Model, Quality Partners of Rhode Island (2006)
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 for LIVING So So DAN ANCE CE
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! Life is for Livin’ by Barclay James Harvest from the Album Turn of the Tide (1981) Sherry L. Dupuis, Ph.D. sldupuis@uwaterloo.ca 519-888-4567, ext. 36188 http://www.uwaterloo.ca/pidc @pidcalliance @crackeddementia PartnershipsInDementiaCareAlliance CrackedonDementia
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/.
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