Huron County Culture Change Coalition-November Meeting

In mid-November, the Huron County Culture Change Coalition (CCC) met to continue the data analysis process in the Discovery phase of the culture change process.

The Huron County CCC is made up of members from various community groups and is not linked to a single Long Term Care (LTC) facility. These community groups are oriented towards providing care for individuals living with dementia in their home.

How we read the data? 
 
During our meeting, the group focused on analyzing data collected from staff from various agencies in Huron County. The group worked to read the narratives and responses to survey data in relation to determining what the data said about the ideal care experience for family, staff and client experiences.  They also worked to look at what is happening when things are working well and people are happy in the data.   These methods are in line with the methods of appreciative inquiry.

The group looks at data from collected from multiple sources, including family partners in care, individuals living with dementia and staff and care providers from multiple organizations.  Each time they assess data, they consider what the data is telling them in relation to these same groups.  This is reflective of the focus on relationship centered care.

Focus on Relationship-Centred Care
 
Relationship centered care understands that the well being of everyone in the care experience, persons living with dementia, their family partners in care, as well as staff at all levels, must be taken into account in order to provide ideal care experiences.

Lessons Learned and Re-affirmed
 
At the end of the meeting, the group collaborated to see what lessons have been learned from the meetings thus far.  Of note was that as we have moved through the data collection and analysis process, there are important similarities in the data that comes from family partners in care, staff and individuals living with dementia.  This is interpreted as a positive sign.  Further, the group re-affirmed to themselves that Huron County is unique, with unique challenges related to the provision of care, but the care that is offeredis commendable and respected by those who are involved.

The group recognized from the data that staff is understood to be dedicated and caring, and re-affirmed their committment to bring the results of their analysis back to staff and others who participated in the data collection process as a sign of respect.

Yee Hong Culture Change Coalition (CCC)--November Meeting

In mid-November, the CCC at the Markham Yee Hong Centre for Geriatric care met and, as usual shared a meal together.  Yee Hong serves a primarily Chinese and South Asian clientele, and works hard to ensure that cultural values, such as celebration and sharing food, are reflected in their own culture change practice.

The Yee Hong CCC is at the first Dawning (pdf) stage of the culture change process. Using a modified appreciative inquiry approach developed by the Partnerships in Dementia Care (PiDC) Alliance, the group is working to lay the foundation for change.  Yee Hong's CCC has a number of new members,  many of whom work in different floors and departments and, as in  Long Term Care (LTC )facilities everywhere, do not get a chance to interact with one another as often as they might like.   This means, as we move through the process, that we make efforts every time we meet to get to know one another, to feel safe and comfortable with one another.

To that end, at the November meeting, we worked on several exercises to establish safety and trust.  The culture change process asks people to think boldly, outside of the bounds of 'regular' administrative or 'problem solving' and to be brave in working for change and imagining the future.  This is why establishing trust and safety is critical at this and all of our CCC sites.

At the meeting, the team worked with a 'talking stick' to discuss ideas and experiences around safety and cooperation.. The group reported that
a) the exercise was important because it allowed everyone a chance to share, feel closer to one another and;
b) the exercise re-affirmed everyone's listening skills and;
c) the exercise helped to celebrate the strong ethic of teamwork that already exists at Yee Hong.

The group is looking forward to the December meeting which will include a holiday celebration.

Partnering Together for Change --November Meeting

The Partnering Together for Change (PTfC) team, comprised staff and family partners from Bloomington Cove Specialty Care in care and researchers from the PiDC Alliance met in late November.

PTfC is nearing the end of the 'Discovery' phase of the Culture Change Process. For the last several meetings, the team has been working collaboratively to analyse data related collected from key stakeholders at Bloomington Cove.

This month, PTfC focused on data collected from residents about their experiences at Bloomington Cove.  PTfC and the whole PiDC Alliance is committed to ensuring that voices of residents are always heard throughout this culture change process. Group members spent the last month collecting narratives from residents at Bloomington Cove. They did this as they went about their days at Bloomington Cove, completing work, decorating for Christmas, attending to personal care.  The group worked together to share these narratives and then analyze what we can learn about them in terms of what is happening when residents are happy at Bloomington Cove. 

Researchers from the PiDC have also worked to make art based projects with residents from Bloomington Cove. Dr. Lisa Meschino talked with the group about the processes used to create art for residents with various levels of verbal acuity.  The group then worked together to 'read' what makes people happy at Bloomington Cove based on representations in art.   

From the narratives and data from these art based focus groups, the team worked to contribute to the growing list of analyses.  All of these will be important as the group enters the next stage of the process, the 'Dream' phase, in which the team will wrok together to imagine what might be at Bloomington Cove.

Before parting, the PTfC reflected on the data and collaborated to produce five 'takeaways' ideas that became apparent throughout the meeting.  The group reaffirmed that music and companionship are very important to Bloomington Cove residents, that residents feel a clear sense of 'home' at Bloomington Cove and that even casual visitors remark on the welcoming nature of the space. Finally, the group agreed that the art based images that were produced at past art based focus groups were a powerful and evocative tool for gathering resident experiences.

Dementia Care in Denmark

The Partnerships in Dementia Care (PiDC) Alliance is focused on culture change in Long Term Care settings for people who are living with dementia. We encourage you to listen to this podcast (click on the link and follow the simple instructions) about remarkable work that is being done in Denmark.  The documentary was recently produced by the CBC's Sunday Edition and is an inspiring listen for anyone interested in how to think about and include individuals living with dementia in the care process.

Click here to Listen! 

It's the first story after Michael Enright's introductory comments. Take some time to listen this weekend.

Launch of the Living with Dementia Web Resource

Below you'll find some images from MAREP's launch of the Living with Dementia website. 

Lead by Dr. Sherry Dupuis and Lisa Loiselle at the Murray Alzheimer Research and Education Program at the University of Waterloo and Dr. Carrie McAiney in the Department of Psychiatry and Behavioural Neurosciences at McMaster University, the Living with Dementia resource, available in both English and French, was created by persons living with dementia, family members, and professionals working in dementia care using participatory action research. 

The three year project has involved: 

1. identifying the information needs of persons newly diagnosed and their families; 
2. searching out and assessing existing resources designed for persons and families experiencing dementia; 
3. creating a resource that was relevant, accessible and useful to both persons with dementia and their family partners in care;
4. and pilot-testing the tool with persons with dementia, family members, and professionals.

The research-based tool is intended to help enable those diagnosed with dementia and their families to live well and prepare for the road ahead.  

In early November, nearly 60 people involved in the creation and support of this project came together to celebrate the fruits of this collaborative effort and to see the finished product.

 Co-Lead Lisa Loiselle demonstrates the website 

to those gathered to celebrate the launch on Wednesday November 7, 2012.

Computer Stations set up so that attendees could browse the site.

Click Here to see the site !  Please send the link to anyone who might benefit from this wonderful resource.

The PiDC Alliance Presents findings at the Gerontological Society of America Meetings

PiDC Project Co- Principal Investigator, Dr. Sherry Dupuis is presenting a poster detailing work to date by the Partnerships in Dementia Care Alliance at the 65th meeting of the Gerontology Association of America in San Diego California.

The poster is the result of a collaborative effort between members of the research team reflecting their experiences at the four Culture Change Coalition (CCC) sites.

The purpose of the poster is to provide a detailed accoutning of our culture change process thus far including "Speedbumps" (situations, issues or experiences that remind us to slow down and reflect on teh culture change process) and "Ramps to Opportunities" (experiences, supports and occasions that nurture relationships and open up new possibilities". 

This process is reflective of the larger goals of the PiDC Alliance, including:

1. Facilitating sustainable culture change where all voices in Long term Care settings, including residents/clients, family members and staff are heard, and included in decision making
2. using participatory action research and  Appreciative Inquiry to identify existing strengths and aspirations
3. Enhance the care experience of residents/clients, family members and staff
4. Identify outcomes of Culture Change
5. Build capacity to implement and sustain Culture Change
6. Translate our findings broadly.

See the Poster!
This handout accompanies the poster 

Living with Dementia Website launches!

The Partnerships in Dementia Care (PiDC) Alliance is proud to congratulate MAREP on the launch of their new website.  The Living with Dementia website contains important, accessible information on how to live with a diagnosis of dementia. It is a valuable resource for individuals living with dementia, their family partners in care, as well as healthcare and other individuals who work, live or interact with individuals living with dementia.

New website launches to assist those with dementia and their families

WATERLOO, Ont. (Wednesday, November 7, 2012) – A diagnosis of Alzheimer’s disease or a related dementia leaves both the person with the illness and their family members with many unanswered questions.  Researchers at the University of Waterloo and McMaster University are leading a project that has resulted in the creation of a new web-based resource that provides valuable information that will help navigate the journey of living with dementia.

Launching today, the Living with Dementia website (www.livingwithdementia.uwaterloo.ca) was designed to provide persons newly diagnosed with dementia and those who care for them with the information and resources needed to live well with an illness causing dementia. This new research-based website, available in both English and French, was created in collaboration with persons living with dementia and their family members and care providers.

“I would have been ecstatic to have walked away from my doctor’s office with this information; something that would allow me to be proactive and give me a sense of direction, instead of sitting in my car crying and feeling hopeless,” said Brenda Hounam, who was diagnosed with dementia 10 years ago. “This website is a lifeline. It is a place to get safe, hopeful information.”

The website covers a wide range of information with topics identified by those living with dementia, including answers to questions surrounding health care, how to continue living well with dementia, how to ensure they are receiving the right care and support to meet their needs, and how to begin the process of planning for the future. 

“Persons with dementia and their families can continue to live well and have meaningful lives when they have the information and resources available to support them in doing that.” said Sherry Dupuis, co-investigator and Director of the Murray Alzheimer Research and Education Program (MAREP) at the University of Waterloo. “What makes this resource unique is that it was developed specifically by persons with dementia and their care partners working actively with our extensive team of researchers, educators, health professionals, pharmacists, and family health team representatives. This ensures it is relevant and easily accessible to persons and families diagnosed with Alzheimer’s disease or another related dementia.”

Carrie McAiney, co-investigator, and associate professor in the Department of Psychiatry & Behavioural Neurosciences at McMaster University adds that this resource will be a valuable tool for professional health care providers and community organizations supporting those whose lives are touched by dementia.  "This project will help physicians, pharmacists, Alzheimer Societies and others find ways to integrate the Living With Dementia resource into their everyday practice so it can be shared with those living with dementia and their family members,” she said.

About MAREP

The Kenneth G. Murray Alzheimer Research and Education Program (MAREP) is a unit of the Schlegel-UW Research Institute of Aging. Based in the Faculty of Applied Health Sciences at the University of Waterloo, MAREP is an innovative program that adopts an authentic partnership approach and integrates research and educational activities in an effort to improve dementia care practices in Canada and beyond. Its goal is to enhance the ability of all involved in dementia care, including persons with dementia, their family partners in care, and professional care partners, to respond to the needs of persons with Alzheimer’s disease and related dementias and ultimately improve the quality of life of all those experiencing dementia. For more information about MAREP, visit www.marep.uwaterloo.ca.

About the University of Waterloo

In just half a century, the University of Waterloo, located at the heart of Canada's technology hub, has become one of Canada's leading comprehensive universities with 35,000 full- and part-time students in undergraduate and graduate programs. Waterloo, as home to the world's largest post-secondary co-operative education program, embraces its connections to the world and encourages enterprising partnerships in learning, research and discovery. In the next decade, the university is committed to building a better future for Canada and the world by championing innovation and collaboration to create solutions relevant to the needs of today and tomorrow. For more information about Waterloo, please visit www.uwaterloo.ca.

About McMaster University

McMaster University, one of four Canadian universities listed among the Top 100 universities in the world, is renowned for its innovation in both learning and discovery. It has a student population of 23,000, and more than 156,000 alumni in 140 countries.

For further information about MAREP and the Living with Dementia, contact:

Lisa Loiselle, Murray Alzheimer Research and Education Program (MAREP), 519-888-4567, ext. 35040 or loiselle@uwaterloo.ca

Media Contacts:

Pamela Smyth, University of Waterloo, 519-888-4777 or email: psmyth@uwaterloo.ca

Veronica McGuire, McMaster University Health Sciences, 905-525-9140, ext. 22169 or email: vmcguir@mcmaster.ca

Fall 2012 Newsletter is here!

The PiDC Alliance is proud to announce the publication of our fall newsletter. 

Click here to see what has been happening at our CCC sites, where we have been taking our research, and to meet some new team members.

 Want to catch up on previous editions? Here you go!

Happy Fall Everyone!