A Changing Melody: Building Authentic Partnerships in Dementia Care

1. A Changing Melody: Building Authentic Partnerships in Dementia Care Sherry Dupuis, Lisa Loiselle, Cathy Conway, Brenda Hounam, Lynn Jackson, Ken Hancock, Jack Henderson, Gina Bendo Sunday March 27, 2011 Alzheimer Disease International Conference

2. Group ReflectionsIdentifying Disablers On your table, you will find a page of quotes. Choose one person to read the quotes aloud. Share your reflections of the quotes with others at your table. Think about: What types of things disable persons with dementia?

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4. Summer 2001 – getting the call Investigated other forums Partnerships explored (MAREP, ASO, ASC, DASNI) First meeting held on February 25, 2002 Website questionnaire distributed Naming the forum Early Beginnings

5. Purpose: working in partnership with others, to provide a positive environment for persons with dementia, family members, and other care partners to come together and learn from one another about how to live a meaningful life with dementia and actively improve the quality of life of all those experiencing it.

6. value, listen and include all voices relevance and accessibility make time for regular reflection on the process consider language and communication build safety and trust know target audience must work together Learnings from Our Failed Attempt

7. Why use an authentic partnership approach? • persons with dementia have the right to be, and must be, involved in dementia care • understanding the experiences of dementia from the perspective of those living with dementia is critical to QOL • persons with dementia can continue to grow and learn but need adequate information, resources and support to do so • good dementia care requires strong partnerships between allthose involved in dementia care

8. What is an Authentic Partnership? An Authentic Partnership… • actively incorporates and values diverse perspectives and includes all stakeholders directly in decision making

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10. Guiding Principle #1A Genuine Regard for Self and Others focuses on recognizing abilities and demonstrating mutual caring, concern, and respect for the welfare of others ‘[This approach] values me as a person and the contributions that I can make to dementia care, to my own care.’

11. Asks: • How can we include the contributions of others in decision-making? • How can I get to know others in the partnership and help them know me? • How do we demonstrate to others that we value them and their input? • How can I feel valued in this partnership? • What strengths does each person bring to the partnership?

12. Guiding Principle #2Synergistic Relationships focuses on integrating the collective abilities and gifts of the group to develop new and innovative responses to issues ‘An authentic partnership will be stronger together than apart, with everyone acknowledging others expertise and strengths, but realising it is the group as a whole that decides on the direction or action that is taken.’

13. Asks: • What are the collective assets of the group? • How are opinions/perspectives of partners shared among the group? • Who is included? Who is not? Why not? • How do we support all partners in sharing their perspectives and strengths? • How can we incorporate all contributions into a combined solution? • How can we build and maintain trust?

14. Guiding Principle #3Focusing on the Process being attuned to new learnings and possibilities, required adaptations, and unanticipated outcomes that emerge throughout the process and not just at the end ‘In any program, or anything we attempt in life, is always a continuous adapting. Having a group of people that is willing to shift and change as things change, that’s so important.’

15. Asks: • How do we demonstrate more flexibility? • What other approaches and possibilities should we be considering? • What changes do we need to make? How? • What have I/we learned thus far from the process • How can we be more creative in our approach?

16. Factors that Enable Authentic Partnerships • Connecting and committing • Creating a safe space • Valuing diverse perspectives • Establishing and maintaining open communication • Conducting regular critical reflection and dialogue

17. Authentic Partnerships in Practice:Success Stories and Key Learnings A Learning and sharing Forum for Persons with Early-stage Dementia and their Partners in Care

18. Group Dialogue #1Identifying Possibilities Thinking about the principles and enabling factors of authentic partnerships, how might you incorporate an authentic partnership approach in your own work?

19. Group Dialogue #2Identifying Supports What do you need (supports, resources, knowledge, etc.) to adopt an authentic partnership approach? How can we support you?

20. Personal Reflections From Our PartnersHow our partners have been changed?

21. What Are Your Questions?

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23. Watch yourself. Every minute we change. It is a great opportunity. At any point, we can step out of our frozen selves and our ideas and begin afresh. (Natalie Goldberg, 1986, Writing Down the Bones)

24. Thank-you for your participation and feedback! For more information about MAREP, please go to our website: www.marep.uwaterloo.ca