Visiting with Chris Wynn - Celebrated Film Maker and Family Partner Care

On Wednesday October 17, 2012, Chris Wynn, creator of the documentary "Forgetful Not Forgotten" came to visit MAREP (inset picture - Chris and Lisa Loiselle).

Chris works as a freelance editor on short documentaries, public service announcements, and music videos. Forgetful Not Forgotten was his first feature documentary. Chris documented his father (John Wynn) and his family's journey with dementia from early in the illness to John’s final days living with Alzheimer's disease.

As described on the "Forgetful Not Forgotten" website (www.forgetfulnotforgotten.com/), the film presents "an honest, moving, and at times heartbreaking film, Forgetful Not Forgotten weaves past and present to both celebrate the man who was and mourn his painfully slow and steady disappearance."

MAREP was pleased to host Chris for the afternoon as he came down to visit with the local Young Carer's Group. In the fall of 2009, a small group of alumni from Leadership Waterloo Region came to understand the plight of young carers as an issue that needed to be addressed.

The group connected with one of only three operating young carer programs in Canada — the Young Carers Initiative of Niagara — and educated themselves with an eye to motivating local community agencies to join in searching for practical solutions. This effort has led to the development of the Young Carers Project of Waterloo-Wellington, comprising representatives from seven community organizations as well as former young carers with a vested interest in supporting other young carers in the community.

The Young Carers Project of Waterloo-Wellington, in partnership with MAREP, has received funding from the Homewood Foundation for a joint research/knowledge translation project to:

• identify the needs of young carers in our community
• create resources that will help them meet their needs and cope in their roles
• help our community agencies understand how they can better support young carers.

For more information about the Young Carers Group, please contact Lisa Loiselle at loiselle@uwaterloo.ca or please review our Fall 2012 Innovations newsletter to learn more about some of the projects the Group may be involved in.

"Living and Celebrating Life Through Leisure" Research and By Us For Us Guide

At the Activity Professionals of Ontario (APO) 2012 Annual Convention in London (October 17-19), members of the Living Life Through Leisure (L3) team, Jessica Luh Kim from MAREP and Karen Megson-Dowling from Sunnybrook Hospital, shared with attendees the research that the team has been engaged in since 2008/2009. 

The L3 team is composed of a group of diverse stakeholders including persons living with dementia, family partners in care, professionals working in the dementia care or recreation field, and researchers, to critically examine how we understand leisure within the dementia context and to create an alternative understanding that would be rooted in the perspectives of persons living with dementia (the "real" experts).

Attendees, mainly Activation and Recreation Professionals working in the community (e.g., day programs, hospitals, retirement homes) and long-term care sector, learned that for many people living with dementia, leisure was a space to experience life despite a diagnosis of dementia.  In fact, people with dementia prefer professionals to stop focusing on the illness and/or disability, but instead support them in living and celebrating life to the fullest through leisure. 

Through leisure, persons with dementia found opportunities to:

• be me
• be with
• seek freedom
• find balance
• make a difference
• grow and develop
• and have fun!

In a recent presentation by Dr. Allen Power, M.D. (inset) at the Allies in Aging Conference (October 18th, 2012) in Kitchener, Ontario, Dr. Power, an Eden Alternative Educator and the author of "Dementia Beyond Drugs: Changing the Culture of Care", discussed how these 7 leisure experiences were very similar to The Eden Alternative's seven Domains of Well-Being which include:

• identity
• growth
• autonomy
• security
• connectedness
• meaning
• joy

Attendees at both conferences, APO and Allies in Aging, were challenged to move away from the biomedical approach to dementia and to shift towards a new culture of care where meaningful experiences and well-being are at the forefront of care.

For more information about the By Us For Us Guide - "Living and Celebrating Life Through Leisure", please visit the MAREP website at www.marep.uwaterloo.ca (under educational tools).

MAREP and PiDC Researchers at the Canadian Association of Gerontology

At the Canadian Association of Gerontology Annual Meetings in Vancouver, BC on Friday October 19th, from 3-4:30 pm PiDC team members will collaborate on a session entitled The Partnership in Dementia Care Alliance . During the session:

Dr. Sherry Dupuis will give a paper co-authored with Dr. Lisa Meschino, entitled Supporting Inclusiveness in Culture Change at Bloomington Cove Specialty Care (Abstract here). The paper will discuss the work to date at Bloomington Cove where the CCC has worked to foster inclusiveness and has begun work on analyzing the data collected during the Discovery Phase of the Appreciative Inquiry process.

 

Dr. Jenny Ploeg will give a paper co-authored with Jessica Luh Kim entitled The Culture Change Coalition at Yee Hong Centre for Geriatric Care (Abstract here). In it, Dr. Ploeg discuss the work to date at the Yee Hong Centre for Geriatric Care in Markham. Dr. Ploeg will discuss how the Yee Hong CCC, which serves a primarily Chinese and South Asian population, incorporates an understanding of specific cultural traditions in their approach to Culture Change in the Dawning phase of the Appreciative Inquiry process.

Jennifer Carson will give a paper co-authored with Dr. Carrie McAiney entitled Building on an Organization-Wide Culture Change Initiative: The Experience at the Village of Wentworth Heights (Abstract here). In it, Jennifer will discuss the unique process of culture change at The Village of Wentworth Heights and talk about her findings and experiences in facilitating an organization-wide culture change process and share the experiences of a PiDC site working in the Deliver or Destiny phase.

Dr. Lorna De Witt will give a paper co-authored by Jennifer Gillies entitled Collaborative Relationships in a Community Care Partnership (Abstract here). In it, she will share PiDC experiences in the creation of the Dawning phase of Appreciative Inquiry and talk about how this phase, new to the traditional Appreciative Inquiry process, helps CCC’s foster authentic relationships and sets the stage for the subsequent four stages: Discovery; Dream; Design; and Deliver.

Other papers written by MAREP partners at the Annual Meetings include:

Dr. Elaine Wiersma's paper entitled "Taking a Social-Ecological Approach to Self-Management for People Living with Dementia" taking place on Friday, October 19th at 8am.

Colleen Whyte's paper entitled "Exploring Tensions between Policy, Practice and Lived Experience in Long-Term Care" taking place on Friday October 19th at 8am.

Other Activities: On Friday October 19th, MAREP's Dr. Sherry Dupuis will facilitate a conversation entitled "Advancign Culture Change in Canada" This is hosted by the Research Institute for Aging. Dr. Josie d'Avernas of the RIA, Doctoral Candidate Jennifer Carson of UWaterloo and Schlegel Villages and Dr. Peter Reid of the Pioneer Network will give short presentations. The goal of this Special Interest Group is to contribute to dialogue intended to outline strategies to nurther the growing Canadian Culture Change Movement.

Giving a Voice to Persons Living with Dementia - three wonderful opportunities to share your experiences!

Recently, MAREP was contacted and informed about a few wonderful opportunities for people living with dementia to share their own journey and to also discuss issues with others who are also living with the symptoms of dementia. 

Mary McKinlay was diagnosed in 2005 with early onset Alzheimer's disease at the age of 61.  One of the ways Mary has been documenting and sharing her own personal experiences of living with dementia is through the use of an online journal.  This online journal was originally intended for family and friends but has now grown to reach a much broader audience - three to five thousand viewers. Mary states on her website "I write in my Journal several times a month and I'm hoping my experiences and observations can help others on this journey." Please feel free to visit Mary and Jim (her husband)'s website Welcome to OUR PLACE and share your comments and experiences.

 

Kate Swaffer, a poet, writer, chef, and an advocate/activist for aged care, dementia care, and health care service provision, and a person living with dementia, has created a new blog entitled Global Dementia Voices.  Kate's hopes to "encouage people with dementia to tell their stories, to write about their concerns, and to help those caring for them to more fully understand what it is really like for them."  Kate was inpsired to create the Global Dementia Voices blog by a volunteer for Cancer Voices SA (www.cancervoicesa.org.au), who was a cancer survivor herself.  Kate also has another website and blog entitled Creating life with words - Inspiration, love and truth.  Please feel free to contribute to the Global Dementia Voices blog and share your own journey.

Richard Taylor, a person living with dementia and in colloboration with Laura Bramly, writer and editor of the I CAN! I WILL! idea library, will be facilitating a virtual meeting entitled Meeting of the Minds.  Using online webinar software that people can access through their own computers, A Meetintg of the Minds is intended to provide an opportunity for people living with dementia to discuss and identify the issues that most affect them.  The next date for this virtual meeting is for Tuesday, October 23 (10 a.m. PT, 12 p.m. CT, 1 p.m. ET, 2 p.m. AT, and 2:30 p.m. in NFL).  To register to be a part of this meeting or for more information, please email RTaylorsAssistant@gmail.com. 

Volunteering Can Help Make A Difference!

See a movie this weekend!

Are you looking for something to enjoy indoors this weekend with family and friends, now that fall weather is here and the evenings are getting a little crisp? Try out ROBOT & FRANK, a recent  release from the 2012 Sundance Film Festival. Light-hearted and fun, the film also focuses on a near future where highly technological aids make coping with memory loss easier and re-invigorate the lives of everyone affected.

Synopsis from the Princess Cinemas website:

An aging thief with a fading memory finds his love for larceny reinvigorated after receiving a companion robot from his concerned son in this tender sci-fi comedy-drama starring Academy Award nominee Frank Langella. Frank (Langella) is a former criminal living out his twilight years in quiet solitude. Though frequent trips to the local library keep him physically active and mentally stimulated, there's little question that his memory isn't what it used to be, and lately his grown children have begun to express concern over the fact that he lives alone. Bestowed a caretaker robot capable of offering engaging interaction and tending to basic household chores, Frank at first resents his android helper. But in time he lets his guard down and begins to actually enjoy the companionship of his new domestic partner. Later, when the future of the local library is threatened, Frank falls back into his old ways and discovers that his robot also doubles as a competent criminal sidekick.

Click here for showtimes on the Princess Cinemas website.
Princess Cinema and Princess Twin Cinema are located at Princess and King Street in Uptown Waterloo.

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.