Let me start by introducing you to MAREP, or the Murray Alzheimer Research and Education Program... MAREP is an innovative... The key here is that MAREP works within what we call an authentic partnership model...
So, what is an authentic partnership? Well…
The key components of an authentic partnership are…
Some examples of how we put this authentic partnership into practice include… Although
A Changing Melody is… Essentially a conference-like event where persons with early-stage dementia, family partners in care, and professionals come together to learn and share from each other on topics related to dementia. Working in partnership with others, A Changing Melody was able 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. From 2004 until 2008, MAREP hosted A Changing Melody forum at a national level. We had people with dementia and family partners in care travel from all parts of Canada to attend this one-day forum.
We used a partnership approach in the development of this annual event, that is, we brought together a group of persons with dementia, partners in care a professionals to organize the event and also engaged persons with dementia in presenting at the forum.
The full-day program included…
Over a period of 5 years we evaluated this event and, last year, we wrote and launched a guide that will help others coordinate an event of this nature in their own communities. Rather than MAREP hosting a national event every year, the idea is that communities host regional event. This makes the events more accessible to local community members (including those living in rural areas) and also builds capacity within regions. To date, there are 4 A Changing Melody forums schedule to take place in the next year. The inaugural regional A Changing Melody Forum was held in Stratford last week (October 29, 2009), hosted by the Alzheimer Society of Perth County. Other events: April 10, 2010 – Hosted by the Alzheimer Societies of Hamilton, Halton, Brant, Niagara, Haldimand-Norfolk (LHIN 4) and will take place in St. Catharines April 10, 2010 – Hosted by Alzheimer Societies of South East Ontario and will take place in Kingston June 3, 2010 (tentatively) – Hosted by the Alzheimer Society of Durham and Community Care Durham September 22, 2010 – 2 nd annual ACM hosted by Alzheimer Society of Perth County and will take place in Stratford
It’s MY Health: Innovations in Personal Wellbeing TORC 2009 Rural Health Forum November 5, 2009 Lisa Loiselle Associate Director of Research, MAREP
What is MAREP? <ul><li>The Murray Alzheimer Research and Education Program (MAREP), a major division of the Schlegel-UW Research Institute for Aging at the University of Waterloo, is an innovative program that adopts a partnership approach and integrates research and educational activities in an effort to improve dementia care practices in Canada and beyond. </li></ul>
What is an Authentic Partnership? <ul><li>An Authentic Partnership… </li></ul><ul><li>actively incorporates and values diverse perspectives and includes persons with dementia, partners in care and professional partners directly in decision making </li></ul>
Mobilizing Authentic Partnerships Genuine Regard for Self and Others Synergistic Relationship Approach Focusing on Process Connecting and Committing Conducting Regular Critical Reflection and Dialogue Creating a Safe Space Establishing and Maintaining Open Communication Valuing Diverse Perspectives Guiding Principles for Authentic Partnerships Factors that Enable Strong Partnerships
<ul><li>By Us For Us Series of Guides </li></ul><ul><li>Age Friendly Communities Initiative </li></ul><ul><li>Recreation Resource Guide </li></ul><ul><li>A Changing Melody Forum and Toolkit </li></ul>Partnerships in Practice
<ul><li>A Learning and sharing Forum for Persons with Early-stage Dementia and their Partners in Care </li></ul>Partnerships in Practice
<ul><li>hosted by MAREP in partnership with the Alzheimer Society of Canada, the Alzheimer Society of Ontario, local Alzheimer Chapters, and the Dementia Advocacy and Support Network International </li></ul><ul><li>planned in partnership with persons living with dementia and family partners in care through direct participation in all decision-making </li></ul>
<ul><li>Full-day programs include: </li></ul><ul><li>keynote and other presentations by persons with dementia and family partners in care </li></ul><ul><li>facilitated group discussion and sharing </li></ul><ul><li>use of art to express experiences (musical performances, play, art exhibit) </li></ul>
Why Implement A Changing Melody? <ul><li>persons with dementia have the right to be, and must be, involved in dementia care </li></ul><ul><li>understanding the experiences of dementia from the perspective of those living with dementia is critical to QOL </li></ul><ul><li>persons with dementia can continue to grow and learn but need adequate information, resources and support to do so </li></ul><ul><li>good dementia care requires strong partnerships between all those involved in dementia care </li></ul>
Connecting and Identifying with Others <ul><li>Connecting and Standing Together in a Supportive Environment </li></ul><ul><li>“ I would recommend EVERYBODY, especially people </li></ul><ul><li>just getting diagnosed; get to some kind of forum quickly…I think for people who have never connected with people before, I just feel so sorry for them because I think support is so important.” – Person with dementia </li></ul><ul><li>“ We’re all on this journey together and it’s just, it’s reassuring to know that you’re not alone.” - Partner in care </li></ul><ul><li>Learning With and From Persons with Dementia </li></ul><ul><ul><li>“ I got the most out of it, hearing others talk about </li></ul></ul><ul><ul><li>their experiences…and I’ve never really had a </li></ul></ul><ul><ul><li>chance to do that before…It really touched me to </li></ul></ul><ul><ul><li>hear others talk about how they are coping.” – </li></ul></ul><ul><ul><li>Person with dementia </li></ul></ul>
Experiencing A New Awakening <ul><li>Experiencing an ‘Aha’ Moment </li></ul><ul><li>“ I’m standing now. Know what I mean? I think I have a better understanding of what’s happening to me and what the future might be like, in that way it helped me a lot…It was an awakening.” – Person with dementia </li></ul><ul><li>Transcending the Disease Through Acceptance and Hope </li></ul><ul><li>“ If I’d of known this, three years ago, I could have done such a better job… at least I know from this point on, I will do so much better. ....since the forum, our last few get-togethers have been amazing. We just really enjoy each other’s company…So I’m very thankful for that.” - Partner in care </li></ul><ul><li>C. Becoming Empowered </li></ul><ul><li>“ The more I know, the more empowered I feel… </li></ul><ul><li>it reduces the anxiety that I might feel.” – </li></ul><ul><li>Person with dementia </li></ul>
Creating a New Face of Dementia <ul><li>A. Reconstructing Meaning </li></ul><ul><li>“ We are all converted people most of us…to know that we are breaking down the stigma, we are trying to change attitudes, there is a systemic kind of change that is going on.” - Professional </li></ul><ul><li>Becoming a Dementia Advocate </li></ul><ul><li>“ And from that time on I just grew more and more positive about being more of an advocate, about being more myself, about enjoying what I’ve got… I had forgotten that I was me and that I could make a difference and now I’m back.” - Person with dementia </li></ul><ul><li>Reflecting Possibilities of “Living” with Dementia </li></ul><ul><li>“ I really was amazed at how smart the people up on the </li></ul><ul><li>stage with Alzheimer’s and telling their story. It’s not </li></ul><ul><li>what I read about…I’m gonna live like I don’t have </li></ul><ul><li>Alzheimer’s.” - Person with dementia </li></ul>
<ul><li>The best community… </li></ul><ul><li>is one in which all kinds of methods create all kinds of situations </li></ul><ul><li>in which each of us finds relationships where our gifts are recognized and magnified </li></ul>(McKnight, 2005, p. 117) How can you help this happen?
<ul><li>For more information about MAREP please visit our website at: www.marep.uwaterloo.ca </li></ul>
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