“A Changing Melody is the most important thing we do”: Learning from Regional Experiences Sherry Dupuis and Lisa Loiselle Murray Alzheimer Research and Education Program Thursday March 8, 2011 27th International Conference of Alzheimer’s Disease International 1

A Changing Melody (ACM) Journey Year Event 2001 Person with dementia calls MAREP 2002 First planning committee established 2004 1st National ACM Forum held in Toronto 2005-2008 4 additional national ACM forums held ACM research informs Authentic Partnership model 2008 ACM toolkit launched Local organisations encouraged to plan and implement regional forums 2011 1st International ACM Forum (held in conjunction with ADI conference) 2008-2012 20+ regional or virtual ACM forums held In 2001, a person with dementia telephoned MAREP looking for a venue where he could share a tool he created to assist him with his memory issues. In searching worldwide for forums that brought people with dementia together to learn and share with each other, we found nothing that met this need. In 2002 we decided it was time and brought together our first planning committee that was made up of persons with dementia, family members, and representatives from our partners, the Alzheimer Society of Canada, the Alzheimer Society of Ontario and the Dementia Advocacy and Support Network International. In 2004 we launched our first national ACM forum in Toronto, Ontario to a sold out crowd of persons with dementia, family members and professionals working in dementia and long-term care. Between 2005 and 2008, we worked with our partners to plan and implement an additional four national forums and conduct systematic research on the process. This research helped inform what came to be called our Authentic Partnership model. With requests from our partners with dementia who wanted to make ACM more accessible to other persons with dementia, we worked with our partners to create a toolkit based on our learnings, provided a series of workshops on ACM, and encouraged local communities to plan and implement their own regional ACM forums. In 2011 we worked with partners to plan and implement our first International ACM forum that gave us the opportunity to provide ACM virtually through live podcast. Since we launched our toolkit in 2008 and passed the torch onto local communities, over 20 regional or virtual ACM forums have been held in local communities across Canada and many more are currently being planned.

Purpose: working in partnership with others, to provide a safe space 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 those experiencing it The purpose of ACM is to work in partnership with others to provide a safe space where persons with dementia, family members and other care partners can come together to learn from and with one another about how to live a meaningful life with dementia and actively improve the quality of life of those experiencing it. What makes ACM unique is that it is planned in partnership with persons living with dementia, family members and other care partners as they work collaboratively in all decision-making. ACM provides an alternative view of dementia, one that focuses on the lived experience of dementia from the perspectives of those living with it. Persons with dementia and family members are the primary speakers and teachers at the forum and we all – persons with dementia, family members and professionals – share and learn together.

Purpose of the Research To examine regional forum experiences Impetus for the forums Supports and resources Strategies for integrating authentic partnerships Challenges and how they were addressed Key learnings In 2011, as part of a larger grounded theory study that has been examining the ACM process and authentic partnerships over the past 10 years, we set out to explore the regional forum experience. We were interested in exploring with persons directly involved in the planning and implementation of a regional forum: What the impetus for the regional forums was The supports and resources that helped The strategies for integrating authentic partnerships The challenges they faced and how they addressed those challenges And key learnings they took away from their process. It was our hope that in understanding these experiences we might be better able to support others in bringing ACM to their communities by understanding what is needed for that to happen successfully.

Method 11 active telephone interviews with 13 regional planning committee members: representing 10 unique forums with diverse regional forum experiences number of regional forums (1 to 3) had worked on half- to full-day forums small (18 participants) to large (100+) forums planned alone to having several planning partners lead by Alzheimer Chapters versus other organisations Thematic analysis guided by the constant comparative method We conducted 11 active telephone interviews with 13 regional planning committee members, representing 10 unique forums. The Interviews were on average 1-1.5 hours in length, audio-recorded, and transcribed verbatim. Our sample was selected purposively to ensure we had representation from a range of regional ACM experiences. Some participants had just planned their first forum and others were working on their third. Some had started small, with half day forums and fewer participants, and others were involved in planning full-day forums for large audiences. A few planned their forums as an individual organisation but the majority collaborated with other partners. Some ACM forums were lead by Alzheimer Chapters while others were initiated by other healthcare or long-term care associations. Lisa and I used the constant comparative method consistent with grounded theory to analyse the data.

Partnering Creatively Together to Implement Change Making a Difference Witnessing to believing in the cause Becoming a Change Agent Becoming a champion Re/committing to the principles of AP Leveraging resources through existing and new partnerships Being creative in balancing financial costs with accessibility Partnering Creatively Together to Implement Change Celebrating and supporting inclusion in alternative ways Recognising, addressing and balancing diverse needs following the process Trusting in/ Building a community for ongoing support Responding proactively to, and overcoming, fears See notes…. Maintaining open and honest communication Making a Difference Expanding understandings Making connections Gaining strength for the road ahead

Conclusions and Implications ACM and authentic partnerships are feasible at the regional level Regional ACM forums are a powerful vehicle for facilitating change in dementia care Future work: strengthen links between all regional planning committees find ways to nurture speakers with dementia continue to work to reduce the protectionist attitudes/fears that limit opportunities Regional ACMS have their unique challenges but are findings demonstrate the feasibility of ACM forums and authentic partnerships at the regional level and the power of the regional forums in facilitating change. More work needs to be done however: We need to find better ways to connect and strengthen links between all regional planning committees so they can share and learn from one another. Programs are needed that help nurture speakers with dementia. Creating a resource library of videotaped segments featuring persons with dementia addressing different topics would also be helpful. Finally we need to find effective ways to reduce, or better yet, eliminate the protectionist attitudes and fears that continue to pervade, limiting the opportunities for persons with dementia to be involved in decision-making and have their needs met.

Thank-you! For more information about MAREP, please go to our website: www.marep.uwaterloo.ca