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

Memory and Techne, a collaborative classroom

This semester, MAREP is forming a new partnership and collaborating with the University of Waterloo Critical Media Lab. In a graduate class called Memory and Techne, offered through the CML, Professor Marcel O'Gorman and his students are thinking about memory and the cognitive processes of forgetting, and in particular the effects of dementia. Students will work directly with MAREP to create design projects that would hopefully better support persons living with dementia and their family partners in care.  In particular, students will develop projects that make use of digital media to advance Alzheimer's research and education. The project may range from the creation of hands-on digital "make" workshops for persons living with dementia to the design of an app to improve communication between persons with dementia and their families.

On Tuesday December 1, 2012, MAREP and the students at the Critical Media Lab will host a public exhibition of these projects for persons living with dementia and their partners in care, the local community, and other students. Watch for an upcoming invitation on our blog!

Some of the course readings include narrative accounts of living with dementia, like Lisa Genova's novel, Still Alice, and When I Was Young & In My Prime by Alayna Munce.

Other readings include Jose Van Dijck's Mediated Memories in the Digital Age.

In the past, students of the Critical Media Lab have produced other fascinating projects including:

• Cabinets of Curiosity- critical arcade games installed at THEMUSEUM in downtown Kitchener;
• Geomosaic- a GPS-tracking artwork in Victoria Park
• Teat Tweet: Dairy Diary- a collaboration with a local dairy farmer, Twitter and robotic milking systems that demonstrated to the public where milk comes from.

This term, working with MAREP at the conclusion of the class:

students will develop projects that make use of digital media to advance Alzheimer's research and education. The project may range from the creation of hands-on digital "make" workshops for Alzheimer's patients to the design of an app to improve communication between persons with dementia and their families.

MAREP looks forward to collaborating with the students in Professor O'Gorman's Memory and Techne class!

The University of Waterloo Critical Media Lab fosters the creation of new media projects that explore the impact of technology on the human condition. The lab is located in downtown Kitchener at 158 King Street West, next to City Hall and The Artery Gallery.

Alzheimer Society Coffee Break fundraiser

Thanks to the AHS faculty, staff, and students, and everyone who attended the "Coffee Break" fundraising event on September 18!

Your generosity helped MAREP and the Alzheimer Society of Kitchener-Waterloo raise $466.46 for the local Alzheimer Society chapter. This annual fundraising initiative helps to support the programs and services provided by the Alzheimer KW to persons living with dementia and their care partners in our community.

"Coffee Break" at the Fireplace Lounge in LHS with Lisa Loiselle, Jessica Luh Kim, Jennifer Gillies, and Darla Fortune.

Jennifer Gillies, formerly MAREP staff and now the Executive Director of Alzheimer Society of Kitchener-Waterloo and Cambridge, dropped in to show her support. Thank you, Jennifer, for your effort in cultivating and maintaining partnerships in the community for dementia care! Read her reflections on leaving MAREP and beginning her new journey by clicking here.

Get involved

Alzheimer Society Coffee Break is a nationwide fundraiser that continues throughout the month of October. Would you like to participate in a local Coffee Break or host one with your organization, community, friends, or family? Find out how by clicking here.

Jennifer Gillies- Farewell to MAREP; Hello to a New Partnership

After working with MAREP over the past seven years, it is with both sadness and excitement that announce I  am embarking on a new journey as the Executive Director for the Alzheimer Society of Kitchener-Waterloo and Cambridge.  As I sit to write this on my last day of work with MAREP, I cannot help but reflect on the amazing experiences I had, and partnerships I have developed.

I first became a Research Assistant in 2005 as a new PhD student at the University of Waterloo. One of my responsibilities was to attend A Changing Melody and interview forum participants, in order to understand the impact the forum had on them. At the same time, I started to become aware of the impact that this forum, and MAREP, was having on me. I began to see dementia and aging from a new perspective - one that associates dementia with empowerment, advocacy, and courage.

Throughout the years, I had the privilege of working on innovative research and education projects that enhance quality of life for persons with dementia and their care partners.  One of my fondest memories was travelling across Ontario with an inter-disciplinary team of researchers and actors to research the impact of I’m Still Here, a research-based drama that changes actions and images of dementia.

In 2007, I served as Acting Associate Director of Research. During this time, I was welcomed into the homes of our partners to help create two By Us For Us guides: resources that help persons with dementia and their care partners better live with dementia. I worked with a team of persons with dementia, their families, and numerous organizations to host A Changing Melody. There,  I witnessed persons with dementia becoming empowered to advocate for change in their communities. I also helped develop the Changing Melody toolkit, a resource used by communities to host local learning and sharing forums.

In 2010, upon completion of my PhD, I returned to MAREP as a Postdoctoral Fellow. In this role, I had the honour of working with the Partnerships in Dementia Care (PiDC) Alliance, and specifically, with folks from the South West CCAC, Saint Elizabeth, One Care, and the Alzheimer Society of Huron County. Together, we were learning about the process of transforming the current care culture into person-centred and relationship-centred care.

Throughout all of these experiences one thing remains consistent - here is a group of dedicated individuals working collectively to enhance the lives of persons with dementia and their care partners. I can say with certainty that through the development of authentic partnerships we can make positive change. While I am going to miss working with the amazing MAREP team, I know that we will have opportunities to work collaboratively to improve dementia care in our communities in my new role. And with such amazing people working together, I am truly optimistic that we will achieve our goals.

Jennifer Gillies, Executive Director, Alzheimer Society of Kitchener-Waterloo and Cambridge