1. “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

2. 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
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)
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.

3. 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.

4. 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.

5. 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 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.

6. 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

7. 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.

8. Thank-you!
For more information about MAREP, please go to our website: