University of Waterloo's youngest financial donor continues to support MAREP

In 2008, Boaz Van Veen was four years old. His parents told him about the efforts of the Murray Alzheimer Research and Education Program (MAREP), and he knew immediately that he would give his savings–$170–to support the project founded by his much-loved and admired family friend, "Grampa Ken."

Garage sale

Now, at the age of 8 years old, Boaz knows that the money he earns in various ways–through garage sales, birthday gifts, even contributions from the tooth fairy–can be used for something special, something much bigger than himself.

“Boaz understands that he is fortunate to have so much and that sharing with others is important. He has learned that there is a time for giving and a time for receiving,” 

says Boaz’s mother, Gael Van Veen.  

In the Fall of this year, Boaz raised $295 and donated all of his savings to MAREP again during a special lunch with University of Waterloo President, Feridun Hamdullahpur (October, 2012).

 

Waterloo President, Feridun Hamdullahpur, and Boaz

Boaz, the University of Waterloo’s youngest donor, presented his second gift to MAREP during a special lunch with University of Waterloo President, Feridun Hamdullahpur in October 2012.

Attending the special lunch was also Boaz’s parents (Gael and David Van Veen), MAREP’s founder Ken Murray and his wife Marilyn, and Associate Director of Research, MAREP–Lisa Loiselle.

Ken Murray, Boaz, and Lisa Loiselle

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

People with dementia are not 'shadows' of their old self

MAREP has been advocating for years against harmful stereotypes that portray or describe persons with dementia as shadows of their old self. This article, written by a woman whose husband is living with dementia, speaks up about this issue:
http://blog.seattlepi.com/witnessingalzheimers/2012/03/09/he-was-never-a-shadow-to-me/

Naomi Feil Validation Method

This video clip is amazing! Naomi Feil, the developer of the 'Validation' method, demonstrates the abilities and personhood of people with dementia, particularly persons labelled as 'non-verbal'. We can all learn a lot about how to interact with others from this emotional and inspirational clip.

Who Cares?

Filmmaker Chris Wynn (Forgetful Not Forgotten) is working on a powerful new series called Who Cares? A Webseries about the State of Alzheimer's Care.

The series will provide a look into the lives of people touched by Alzheimer's Disease and dementia.

The first episode, A Captured Life, features Dr. Cleaver Keenan whose wife was diagnosed with Alzheimer's Disease. In this short video, he shares his wife's journey that he has captured on film.

(Movie still via Vimeo)

ADI Survey.

Hi everyone,

We would like to share this message on behalf of Alzheimer Disease International. Please participate in this survey about stigma and dementia, or pass it on to eligible participants:

As part of the development of the World Alzheimer Report 2012, to be launched on 21 September, ADI is conducting a survey of people with dementia and family or informal carers to find out their opinion and experience of stigma related to dementia. The survey is in English and Spanish. The intended audience is only people with dementia and family or informal carers. Professional carers and associations are not being asked to participate in this way.

There is not much time - the survey will only be available until 17 June 2012.

We need your assistance. Please help us spread the word about this survey by forwarding this email, posting to your websites and social networks.  We would like as much participation as possible.  We recognize the format of a web-based survey may not be the best and only way to collect this information.  However, due to limited resources, we are piloting this to see if it is possible.  If your organization is able, feel free to provide assistance to individuals who cannot complete an online survey due to low educational level, lack of access to a computer or cognitive symptoms that impair their ability to use the survey, but they still have capacity to answer the questions thoughtfully.

Below is the link to the ADI website where more information and a link to the survey can be found:

http://www.alz.co.uk/research/world-report-2012

This survey is also available in Spanish from:

http://www.alz.co.uk/research/world-report-2012-encuesta-espanol

Gather at the Gallery Exhibit on now

MAREP's Lisa Meschino is featured in an article in the Kitchener Record about the Alzheimer Society's Gather at the Gallery program and exhibit. 

Gather at the Gallery, a 10 week collaborative program run with local art galleries, museums and studios, provides an opportunity for persons with dementia and their care partners to "learn and talk about art, and experiment with different media, including pottery, glass, fusion, paining, collage and drawing" (para. 4).

The Waterloo Community Arts Centre/Button Factory on Regina Street South in Waterloo is featuring a special exhibition of the participants' art until May 31st.

Lisa Meschino is working with the Alzheimer Society of KW to research the impacts of this program. For more information on Lisa's work, click here for an article posted in MAREP's newsletter.

Mayor's Forum Age Friendly Waterloo

In November 2009, Mayor Halloran hosted Waterloo's first Age Friendly City forum. Since that time our community has worked together to ensure that the City of Waterloo becomes a place where all residents age safely, enjoy good health and participate fully in their community. On Thursday June 14th Mayor Halloran will be hosting the Age Friendly Waterloo Forum from 8:30-12:00pm at Luther Village on the Park. (Please see flyer below for details.)

Join the Fireside Chat!

On June 19th from 12-1pm, we will be leading a fireside chat (i.e. a web-based seminar put on by the Alzheimer Knowledge Exchange) about the PiDC Alliance. The PiDC Alliance is a collaborative research network and research initiative focused on improving the dementia care experience for persons with dementia, family members, and staff in long-term care and community-based care. The session will highlight key findings from the project and offer tools and resources to those seeking to embark on their own culture change initiative. To join the session, follow the directions below. For more information on the PiDC Alliance, visit the website at www.pidc.uwaterloo.ca

Login information for live event

1. From your telephone: dial the teleconference line: 1-855-450-7670 enter pass code: 2371438

2. To log in to the web conference, go to: http://ake.adobeconnect.com/join
3. In the Adobe Connect login screen, use the first login option to login as a GUEST:

• Enter the session by selecting the 'Guest' option
• Enter your First and Last Name
• Click 'Enter Room'- you should be in!

Note:

• Log in at least 10 minutes before the session.
• If the link does not work directly from this document, please copy and paste it into your web browser address bar
• If your computer SPEAKERS are on please turn it OFF or MUTE the volume to prevent feedback

Public Lecture with Dr. Stephen Post

Jessica Luh, MAREP's Associate Director of Research, listened to and met Dr. Stephen Post last night at a free public lecture put on by the Alzheimer Society of Hamilton and Halton in partnership with the Cilbrea Centre for Studies in Aging, McMaster University. The theme of his lecture was 'hope and continuing self identity: finding meaning in the care of those with memory loss'.

Dr. Stephen Post is a professor of preventive medicine at Stony Brook University and the author of two bestselling books, "the Moral Challenge of Alzheimer Disease" and "The Hidden Gifts of Helping".

Dr. Post's perspective is very much aligned with MAREP's as he openly discussed the importance of "accepting, affirming, connecting, and respecting" and how a person's personhood is still ever present even in the later stages of the illness.

Volunteer Appreciation Week - Continued.

As you know, this week is Volunteer Appreciation Week!
 
Here is our second feature interview, designed to shine the spotlight on our amazing student volunteer team (to read the first interview, click here).

Today, I'd like to introduce Nicole:

Program/Year: Going into my 3rd year of a Therapeutic Recreation/Recreation and Business double major.

Favourite class: Rec 220 - Program Management and Evaluation

Hobbies/Interests: Volleyball and tennis

Future plans: After I complete my undergraduate degree I would like to work as a recreational therapist in a hospital.  

I volunteer because…I like using my free time to help out wherever I can!

--

Thanks, Nicole! We are glad to have you on board. Good luck with your summer position at Allendale Nursing Home. We look forward to seeing you in the fall.

Volunteer Appreciation Week.

This week is Volunteer Appreciation Week!

In honour of the hardworking volunteers here at MAREP, we will be running 2 feature interviews this week, shining the spotlight on our amazing student volunteer team!

Today, I'd like to introduce Brianne:

Program/Year: Honours Health Studies, 4B

Favourite class: This term I really enjoyed GERON 400, a Multidisciplinary Seminar on Aging.

Hobbies/Interests: I love cooking and try to make at least one new recipe each week. I love keeping active by jogging (I aim to be able to run 10km by the end of the summer) as well as by playing sports including hockey, ringette, volleyball, beach volleyball and soccer. This summer I look forward to doing a lot of reading.

Future plans: I will be starting a Bachelor of Science in Nursing at the University of Toronto in September. My long-term goal is to become a Nurse Practitioner.

I volunteer because…I love giving back to my community. More specifically, I find the work that MAREP does as an organization is very valuable for anyone who is somehow linked to a person with dementia. The numerous courses I have taken about aging have sparked my strong interest in dementia and dementia care. And with the increasing prevalence of dementias in our population, the importance of support such as that provided my MAREP cannot be overestimated.

--

Thanks, Brianne! We so appreciate your contribution to MAREP this year. We are wishing you all the best in Nursing this fall.

Happy Weekend!

It might be Friday the 13th, but with all of the sunshine out there, it feels like our lucky day!

Enjoy this collection of great reads from around the web as you wind down this weekend:

The Rubin Museum of Art in Manhattan provides an opportunity for people with dementia and their partners in care to reconnect through art. (This reminds me of Gather at the Gallery, a program that our Postdoctoral Fellow, Dr. Lisa Meschino, is involved with).

What an interesting and creative campaign for Alzheimer's awareness. What do you think?

In Canada, dementia will directly affect 1.1 million people in less than 25 years. The rising economic cost of the disease will increase tenfold to a staggering $153 billion per year. Why doesn't Canada have a national dementia plan? The Alzheimer Society is encouraging you to add your voice to the discussion here.

A lovely video that reminds us of the powerful impact that music can have on quality of life (you can also read about it here).

(Images from top: New York Times; Alzheimer Society of Canada; The Stir)

Long Term Care Task Force

I recently learned about the Long Term Care Task Force from a tweet by @AlzheimerPeel

According to the site:

The Task Force was established in response to media reports of incidents of abuse and neglect in long-term care homes and underreporting of these incidents. It is independent of government and has broad representation from across the sector, including family and resident councils, nurses, physicians, unions, personal support workers, long-term care provider associations and advocates.

Share your story about your experiences in long term care. Your thoughts and feedback can make a difference for yourself and others!

Introducing: Amanda Waring

Dr. Sherry Dupuis (Director of MAREP) and Lisa Loiselle (Associate Director of Research) traveled to London, England this week to present at the 2012 Alzheimer's Disease International Conference.

In her travels, Lisa had the opportunity to meet and chat with Amanda Waring. Amanda is an actress, filmmaker, and speaker from the U.K.

An important aspect of Amanda's work is giving inspirational keynotes about person-centered care. Using her award-winning film, What Do You See?, Amanda explores themes of diginity, respect, and compassion in care.

Lisa Loiselle (left) pictured here with Amanda Waring

View a clip from What Do You See? below:




Thank you, Amanda, for sharing your inspiring work with us!
We look forward to sharing more learnings from London as the ADI Conference unfolds.

Walk for Memories

I had a wonderful experience at the Walk for Memories yesterday afternoon!

The Kitchener-Waterloo walk had a great turnout and raised almost $70,000 - enough to support the Alzheimer Society's programs for a full year.
 
It was such a lovely day - lots of families and smiling faces all around. I can't wait to do it again next year!

Here are a couple of photos from the day (Garth is my friend Robbie's dad, we walked in his honour).

Honouring Lives in Long Term Care

A colleague of mine brought this article to my attention today - it's worth a read!

Via Windsor Star

The staff at the Village of Aspen Lake have a unique and special way of honouring the lives of the people they have cared for. This movement toward relationship-centered care is exactly what MAREP and our partners advocate for. Personally, I think it's a lovely story, and I only hope that my loved ones will receive the same standard of care as they age.

Interestingly, a heated debated has broken out in the Comments section of this article. When does care cross the line from professional to inappropriate?

Read the comments and decide for yourself!

Alzheimer Awareness Month

January is Alzheimer Awareness month.

How will you recognize it with your loved ones or organization?

Many people (like me) will be participating in the Walk for Memories. If you are interested in participating, don't forget to register soon!

This will be my first Walk for Memories and I'll be walking with a team. My friend Robbie's dad was recently diagnosed with early onset Alzheimer's, and his family and friends have created a team in his honour. 

I was looking online at footage from walks and I found this video of a dance mob at a Walk to End Alzheimer's in Seattle (things get really jazzy around the 2:30 min mark). I love the fun and joy that the mob brought to the event.

Speaking of the Alzheimer Society, they've recently launched a new campaign called Let's Face It. the campaign is in response to recent survey which indicates that almost half of respondants lived with symptoms of dementia for over a year because they didn't know the facts.

I think the campaign video is simple and effective.

January is a great time to figure out how you can Get Involved with your local Alzheimer Society or other organizations!