A Changing Melody: A Learning and Sharing Forum for Persons with Early-Stage Dementia and their Partners in Care

A Changing Melody is a learning and sharing forum specifically designed for persons with early stage dementia and their partners in care and is sponsored by the Murray Alzheimer Research and Education Program (MAREP) in partnership with the Alzheimer Society of Canada (ASC), the Alzheimer Society of Ontario (ASO), and the Dementia Advocacy Support Network International (DASNI).

To date, MAREP and partners have hosted 6 events:

Specific Topics Addressed at Past Forums:

2004 Forum

Getting the most out of the day (current medications and treatments)
Living with dementia (dealing with grief and loss)
Adapting and enhancing leisure activities
Advocacy and dementia (how to be a strong self and group advocate)
Planning ahead (primarily advance care planning)
Also premiered One More Memory and I’m Still Here

2005 Forum - Taking Control of our Lives (Forum proceedings in downloadable PDF)

Norma Selby on If we don’t, who will?
Panel discussion with two persons with dementia and a family care partner talking about how to live with dementia
Self advocacy workshop
Lifestyle choices and approaches with a medical doctor, naturopathic doctor and two massage therapists
Also premiered Heal Me and held a creative arts gallery

2006 Forum - Fighting Together to Win (Forum proceedings in downloadable PDF)

Keynote address on fighting together to win
Empowering people with knowledge (medical doctor spoke on current drugs and other treatments)
Interactive workshop on enhancing abilities through meaningful activities
Rising above misconceptions (a person with dementia spoke about his experience and a researcher spoke about how to give voice to people with dementia)
Also had Sean Day sing Live a Lot and a Meaningful Activities Showcase

2007 Forum - Forging Ahead with Courage and Hope (Forum proceedings in downloadable PDF)

Keynote address on dealing with Alzheimer’s disease one step at a time
Working effectively with your health care team (both person with dementia and medical doctor spoke on this)
Panel discussion on enhancing communication (including a professional, family partner in care, and person with dementia)
Pantyhose programs: One size doesn’t fit all
Also had a music therapist do two songs and a Celebrating Accomplishments Showcase

2008 Forum - Joining Forces: Building Supportive Dementia Communities (Forum proceedings)

Living with and Transforming Grief and Loss after Diagnosis
Living in Meaningful Ways with Dementia
Building Supportive Communities
After each session, there was time to dialogue about the topics being discussed
Joanne Does performed two musical tributes and opened the forum up with a song writen and recorded for the A Changing Melody forum

2011 Forum - Coping, Adapting, Enabling, Creating: Striking a Balance (Forum proceedings in downloadable PDF)

Coping with stigma and fear
Adapting to change so as to enhance well-being
Enabling persons with dementia rather than disabling
Creating strong partnerships in dementia care and support

In November 2008 MAREP released Creating Partnerships in Dementia Care: A Changing Melody Toolkit. This document is a resource guide to help plan and implement forums specifically designed by and for persons with early-stage dementia and their family partners in care, and is based on a systematic evaluation of the A Changing Melody Forum over a five year period. For more information...

International A Changing Melody 2011 -- Shining Light on the World

On Saturday March 26th, 2011, the Murray Alzheimer Research and Education Program held its first ever International A Changing Melody (ACM) forum. Planned and implemented in partnership with the Alzheimer Society of Canada, the Alzheimer Society of Ontario, local Alzheimer Chapters, the Dementia Advocacy and Support Network International, and the Canadian Dementia Resource and Knowledge Exchange (CDRAKE), our International ACM forum opened the Alzheimer Disease International conference, with the largest crowd yet. Over 300 delegates from across Canada, the United States, England, Scotland, Finland, Australia, Trinidad and Tobago, France, Belgium and other countries joined us in a day of laughter, tears, inspiration, hope, and compassion. In addition, for the first time ever, a live broadcast of the forum was made available thanks to CDRAKE, allowing Chapters to host their own events in their communities and individuals to access the forum in the comfort of their homes.

The day opened with a musical reflection developed around the metaphor and song “This Little Light of Mine”. Lynn Jackson, Ken Hancock and John O’Keefe, members of our planning committee, reminded all in the audience that no matter what our life experiences, we all have a life light we shine on the world. Facilitated by musicians Joanne Does and Dr. Tim Elliott, the audience then united in the singing of “This Little Light of Mine” – voices soared, shakers rattled to the beat, and some got to their feet to dance. Delegates were asked to reflect on those situations that allow their life lights to shine brightly and to share those with others by contributing their thoughts to the growing light of a candle art display. This visual image, that continued to grow throughout the day, was a powerful reminder of the possibilities and hope in dementia.

Our first session focused on the theme of “Coping with Stigma and Fear”. Christine Bryden, a person living with dementia from Australia, and Russ Belleville, a person living with dementia from the United States, shared how they have learned to face stigma head-on. Christine emphasised: “If you are living with dementia like I am, don’t let fear mask the worth you still have and always will have. Know that your life has meaning and nurture this sense of meaning in your life.” Both Christine and Russ spoke about the importance of positive, supportive relationships, optimism, and humour for moving forward with dementia. Loretta Loon, a Health Policy Analyst at the Ontario Federation of Indian Friendship Centres in Toronto described how dementia is not stigmatized and feared in the same way in Aboriginal communities as in the broader society. Guided by principles of respect and inclusion and valuing talking circles and education, Aboriginal communities ensure that the abilities of all are honoured and supported.

Mary McKinlay, a person with dementia from Ontario, Canada, began our second session, using her humour and grace to share with others how she has learned to adapt to the changes she has experienced because of memory loss: “The key is to make life as simple as possible for ourselves”. Mary shared tip after tip on how she has simplified her life so it no longer feels overwhelming and unmanageable. Delegates were then asked to share the ways they have adapted and supported others in adapting to changes. Dr. Mitchell Slutzky, a clinical psychologist from the United States, ended this session with his ten strategies for adapting to and living well with dementia.

Cathie Borrie, an author and care partner who cared for her mother with dementia, and Patricia Bowers, an actress who cared for her husband and stepfather with dementia, began the afternoon performing a moving excerpt based on Cathie’s care experiences. Cathie taught us all the importance of listening deeply in order to follow, not lead, in dementia: “By listening deeply, I hear things I would have missed with my obsessive need to correct her, remind and orientate her, to lead... By following, not leading, I’m given an opportunity to accept and value both the sadness and the unsuspected strangeness and cleverness inside her transforming mind….her humour”.

Our final session of the day featured Agnes Houston, a person living with dementia from the Scottish Dementia Working Group, and her daughter Donna Houston, talking about the importance of creating strong partnerships in dementia care and support. Agnes described both her personal and more formal partnerships that have helped sustain her and move the dementia cause forward in Scotland. Working in partnership with the Scottish Government, professionals and family members, people with dementia have contributed to the creation of the Charter of Rights for People with Dementia and their families, and to the Scottish Dementia Strategy: “What is important for us is that we are participating on equal terms with professionals and it’s a privilege to be able to put across the views of people with a diagnosis of dementia so that this strategy will make a real difference to our lives”. This was a powerful example of what can happen when we all work together. At the end of the session, delegates were asked to create an action item for themselves, indicating how they each would work to mobilize, nurture or contribute to a dementia partnership in their own communities.

Before closing the forum, our founder, Ken Murray, and our Director, Dr. Sherry Dupuis, awarded the Kenneth G. Murray Partnership in Dementia Award to all those Alzheimer Chapters in Ontario who have worked together, and with persons living with dementia and their family members, in the hosting of their own regional A Changing Melody forums. In her closing remarks Dr. Dupuis noted: “these chapters are champions in demonstrating that partnerships can work in practice and are at the forefront of changing how we support those living with dementia, working WITH them and not for them”. MAREP would like to extend congratulations to the following Chapters who received this special recognition and award at the ACM forum:

The Alzheimer Society of Belleville
The Alzheimer Society of Kingston
The Alzheimer Society of Lanark County
The Alzheimer Society of Leeds-Grenville
The Alzheimer Society of Perth (Stratford)
The Alzheimer Society of Sault St. Marie & Algoma
The Alzheimer Society of Oxford (Woodstock)
The Alzheimer Society of Brant
The Alzheimer Society of Hamilton-Halton
The Alzheimer Society of Niagara
The Alzheimer Society of Haldimand-Norfolk
The Alzheimer Society of Durham

Finally, our delegates were escorted out by our musicians for the day, singing and playing our theme song: “We are a changing melody and we are burning bright. Reach out your hands, we are strong when we unite”, a song written by Joanne Does.

A Changing Melody would not be possible if it were not for those so willing to give of their time, financial support, and other resources to the forum. Thank you to our forum sponsors, The Homewood Foundation, Premier Homecare Services and Novartis, and those who provided individual donations: Lynn Jackson, Brenda Hounam, Morris Friedell, Sherry Dupuis and Bryan Smale. Thank you to the Alzheimer Society of Ontario who provided funds for travel subsidies to assist those needing support to attend the forum. Thank you to all those who volunteered their time at the forum – you know who you are. And a very, very special thank you to our planning committee members: Bill Heibein, Brenda Hounam, Jane Mederak, Lynn Jackson, Fred and Ann West, Jack Henderson, Ken Hancock, Katrena Johnston, Cathy Conway, Lynelle Drudge, Gina Bendo, Elaine Wiersma, John O’Keefe, Mary Schulz, and the MAREP team, Sherry Dupuis, Lisa Loiselle, Stephanie Bates, Colleen Whyte, Lisa Meschino, and Dawn Cheng.

At our International A Changing Melody forum we, led by persons living with dementia, highlighted to the world that an alternative dementia discourse – one focused on rights, inclusion, enablement, possibilities, and hope – is possible when we work in authentic partnership with each other. MAREP was thrilled to be showcased as a thought leader in dementia care at the Alzheimer Disease International conference that followed the ACM forum. Featured in a film identifying the best practices in the dementia field around the world, MAREP was recognized for its innovative authentic partnership approach. The MAREP portion of the film can be viewed on our website at www.marep.uwaterloo.ca.

What our delegates are saying:

Moving, thought provoking, changed a number of misconceptions.

Joyful!! You’ve helped me to be a better supportive partner in care.

Wonderful day. So empowering hearing from people living with dementia. Such a great day with so much love and support in the room.

Eye opening!

Amazing. Deeply touching. Changing the stigma of dementia forever.

It gave me a lot of courage.

I feel so fortunate to share and listen to so many wonderful, smart and accomplished groups of people living with dementia. There was so much inclusion and reception of others. My heart danced.

This wonderful forum has helped us enlighten societies around the world that this is an illness (not a plague) and those with dementias have much to contribute for a long time with appropriate medications and support.

During the day, participants were asked to write down their thoughts, feelings and comments pertaining to the day's events. We have included here a summary of the "comment cards". Delegates also provided their tips and strategies for adapting to changes. We have also included here a summary of "Tips and Strategies".

We have also included for you the evaluation results from the 2011 forum.

Thank you to all those who made A Changing Melody 2011 such a huge success!

Special thanks to our sponsor

Homewood