The Murray Alzheimer Research and Education Program (MAREP) in partnership with the Alzheimer Society Waterloo Wellington (ASWW) is progressing well towards their goal of making our local community more dementia-friendly (See Innovations Holiday 2015: Volume 14 Issue 3). Many businesses have already received the Blue Umbrella training, while others are lined up for trainings in the fall. While ASWW has been delivering the training to businesses, MAREP has been active in the participatory monitoring and evaluation (PM&E) of the project.

PM&E is a research method that includes community members along with project staff and facilitators to identify success through frequent small scale evaluations. This method also focuses on the active engagement of the primary stakeholder, allowing everyone to share control of the content, processes and results of PM&E activities. By engaging community members, we build capacity to empower local people to initiate, control and make improvements to the project collaboratively.

With the help of ASWW and the Waterloo-Wellington Dementia Advisory Group (WWDAG), a training session was developed that includes education about dementia and strategies to provide good customer service to people living with dementia. A person with dementia will also engage in co-facilitating the training session to provide first-person advice and feedback through stories and experiences.

In order to properly evaluate the effectiveness of the training sessions, MAREP receives feedback immediately after each training by conducting post-training questionnaires. The results from recent questionnaires returned showed that over 80% of people who had the training felt that it was “Very Good” or “Excellent”. In accordance to the statement “This training will help me perform my job better,” 85% of people who completed the questionnaire responded with either “Agree” or “Strongly Agree”.

Fall Issue 2016

Fall 2016: Volume 15 Issue 2

1— Blue Umbrella Update

2— Memory Boosters

3— A Changing Melody, A Circle of Music, Age-Well

Grant

4— Hack4Health 2.0

A few months after the training is completed, further evaluation is conducted in the form of a “secret shopper” evaluation, consisting of a person with dementia making an unannounced visit to the business and evaluating the customer service. To identify as a person with dementia, a blue umbrella pin is worn on their lapel. Further, companies can identify themselves as dementia-friendly with the blue umbrella decal place in their shop window.

Blue Umbrella has been put into effect in Bobcaygeon, Paris, Kitchener, and Sault Ste. Marie, with many more cities to come. In Paris, Ontario, 99 employees and 19 businesses/services have completed the training. There are over 10,000 people living with dementia in the Region of Waterloo, Guelph and Wellington County. Businesses are realizing that the population of seniors in our community is increasing, and that there is a greater need to train their employees to support customers living with dementia.

Dementia-Friendly Communities - Blue Umbrella Project Update

15(2): Fall Issue 2016 ~ page 1

(Blue Umbrella Logo) (Blue Umbrella Lapel Pin)

Memory Boosters Social Club By: Anne Hopewell

Established in 2012 this unique club for people living with dementia and their partners in care meets twice a month at The Village of Winston Park in Kitchener, Ontario, Canada.

After receiving our initial diagnosis of Alzheimer’s Disease, we contacted our local Alzheimer’s Society to learn about this disease. We became involved in education and support groups and what little social activities that were available. Unfortunately there really wasn’t too much out there, so we decided to create our own group with a few other couples we had met on this same journey.

Once we had located a suitable place to meet we went about developing a program that would suit our needs and appeal to a wide variety of people. Of course refreshments are a big part of our meetings and everyone takes a turn to bring some “sweeties” and fruit. During the refreshment break we all have a chance to socialize.

We wanted to provide a safe and supportive environment where people could come and relax and enjoy themselves without worrying about being judged. We are all on the same journey and understand what others may be going through. We provide information on educational events, seminars, and opportunities for involvement in research at the University of Waterloo, Ontario, Canada. Many of our group have involved themselves in these very worthwhile pursuits.

At the beginning of each meeting there is an opportunity for sharing information or just to discuss an issue that someone is dealing with and we can be a sounding board and help that individual. For example, giving up one’s driver’s license was one topic we dealt with. One of the men was struggling with this. He knew the time had come to stop driving but needed the extra help that his peers could offer him. He was grateful for this support and often expressed this. In turn he was able to support others dealing with this difficult issue.

After this part of our meeting, we then have an activity or game such as: art projects, sing along, bingo, line dancing, cookie decorating, Nordic pole walking, bowling and popular pot lucks. A good part of the time is reminiscing and everyone enjoys sharing and getting to know each other better. We plan themed celebrations for special birthdays and anniversaries. As well, we have had special days to celebrate Christmas, Valentine’s Day, St. Patrick’s day, Halloween and Oktoberfest with one of our members playing the accordion for us. In the worst part of winter we have a Caribbean Day with a steel band that everyone loves. This year we had a special Family Day that gave us an opportunity to meet families and share with them what we do at the Club. Everyone had a great time and we plan to repeat this annually.

We have also organized outings that include visiting local museums, picnics and hikes at local parks. We have gone to a butterfly centre and visited two artists’ studios to make pottery and glass fusion pieces. We were amazed at the results! This year we are going on a day trip that will be a dinner cruise along the Grand River. A new venture for us! We are fortunate to live in a diverse community that has so much to offer.

Every year we form a team and participate in our local Alzheimer’s Society Walk for Alzheimer’s. Our team came in first for last year’s category for fund raising and one of our members has been the top individual fund raiser for the past three years.

We began as a small group of friends that share a similar experience but have now grown to nearly 40 members. Our main goal is to try and have some fun and make some sort of sense of what is happening in our lives. We try to leave our troubles at the door and have some respite. We have been so fortunate to have a very talented retired music teacher join us for most of our meetings. With his help we created a song that we sing at every meeting and have shared at some local events (See green box to the right).

15(2): Fall Issue 2016 ~ page 2

“The Memory Boosters Song”

By: The Memory Boosters Glee Club

& Michel Allard

The Memory Boosters we call our band

Helping each other we lend a hand We make new memories, challenge the

mind So the joys of friendship we will find

CHORUS Laughing Crafting Eating

Playing A smile will make it all worthwhile!

Facing the day with your friends who care

Searching for fun that we all share Greeting one another with a smile These activities make up our style

CHORUS

In many ways meaning can be found, Stimulate your mind, just look around

Sing a song and tap a little beat, Celebrate each moment when we meet!

CHORUS x3

15(2): Fall Issue 2016 ~ page 3

A Changing Melody A learning and sharing forum for people living with dementia and their partners in care

In partnership with MAREP, the Alzheimer Societies of Waterloo Wellington and Perth County are hosting an annual forum for people living with dementia and their family partners in care, called A Changing Melody, on Wednesday November 2nd, 2016. If you are a person with dementia or a care partner, please join us for an engaging day of discussion and presentations. Health care professionals and students are also invited to participate in the event and gain new perspectives!

The theme for this forum is “Moving On With My Life”. The day will include a panel of people with dementia and care partners, live musical presentations and interactive performances, a

unique collection of art pieces by artists with dementia, and an open mic session for questions and answers. “A Circle of Music” choir will also be performing as one of the first intergenerational choirs for people with dementia and local high school students in the Region of Waterloo.

Early bird deadline is September 15th, so register now at acm2016.ticketfi.com!

Engaging People Living with Dementia in Product Design, Testing and Commercialization

With the generous support from AGE-WELL, and in partnership with Emmetros Limited and the Ontario

Dementia Advisory Group (ODAG), Dr. Mark Oremus (School of Public Health and Health Systems) and Lisa

Loiselle (MAREP) will embark on a new project that will engage people living with dementia in product design,

testing and commercialization of information communication technologies (ICTs). More specifically, we will be

working on Memory Sparx— a new ICT, being developed by Emmetros Ltd.

Emmetros is a unique company that is fully committed to including and engaging people with dementia and their

care partners on many aspect of their business. By documenting and tracking how Emmetros engages with

people living with dementia, and asking people with dementia about their experiences being involved, we will be

able to inform best practices for researchers and entrepreneurs looking to engage people with dementia in

product design, testing, and commercialization. Secondly this research will inform best practices for people living

with dementia who aspire to have a voice in design, testing, and commercialization of ICTs intended for their

use. MAREP, Emmetros and ODAG will recruit and engage people in the early to mid-stages of dementia to

work with Emmetros as advisory board members, focus group participants, and usability test participants. We

are hoping that increased engagement of people living with dementia in product development of ICTs will

improve the usability and usefulness of products intended for their use, enabling them to live independently and

with dignity.

A Circle of Music Intergenerational Choir A choir for those living with dementia, their

partners in care and high school students

MAREP is helping with the research and evaluation of a new and exciting musical program called “A Circle of Music Intergenerational Choir”. The Laurier Centre for Music in the Community and the Alzheimer Society Waterloo Wellington are inviting community members to participate in the creation of an intergenerational choir that will include people with dementia, family partners in care, and students from a local high school. Participants will be matched and placed into groups of three consisting of a person with dementia, a family care partner (or volunteer), and a high school student. As group members support each other in music-making, we anticipate that a secondary outcome of this choir will be a sense of belonging for all those involved.

Since this project is still at its beginning stages, participants are needed! Practices will begin in October 2016, and will be held weekly on Thursday afternoons in downtown Kitchener. All materials will be supplied, and refreshments will be provided. Previous musical experience is not necessary for participation! For more details and to register, please contact Sasha Judelson at 519-342-4764.

Hack4Health

MAREP and the Faculty of Applied Health Sciences are very excited to be hosting Hack4Health (H4H) 2.0 this fall. After the success of the first H4H hackathon in 2015, it was an easy decision to plan a 2.0 event. Hack4Health 2.0 will provide an exciting space for the creation of practical applications (software, hardware, and social solutions) for people living with Multiple Sclerosis (MS) and Alzheimer’s disease and other dementias. Hackathons bring together computer programmers, software and hardware developers, graphic designers and project managers alongside other enthusiastic participants who will collaborate in an effort to create new and accessible technology and social solutions.

H4H will begin Friday evening of November 4th,

, 2016. The Friday night will kickoff with keynote presentations and a networking and brainstorming session in the form of a World Café. This will provide an introduction to the event participants and also allow them to connect with their mentors and get advice from last year’s winning hackers. The event will continue into the weekend, with the official hackathon starting early Saturday morning with final judging taking place late Sunday afternoon. The hackathon will end with a networking reception, bringing together the event participants, mentors, sponsors and volunteers one last time. To ensure that participants and supporters are up for the challenge, all meals will be provided throughout the hackathon.

What makes H4H different from the typical hackathon is that participants will have a unique opportunity to learn first hand from individuals living with dementia or MS about the day-to-day challenges they face, through mentorship opportunities from people with lived experience, throughout the course of the weekend. Motivational speakers at the hackathon will provide their lived experience and technical expertise. Participants can then take ideas and develop prototypes and real workable solutions in just two days. There is great potential for real world impact and commercialization of new products through the prizes awarded to participants ($45,000 in prizes were awarded in 2015). Additionally, participants take home an understanding of the life experiences and day-to-day challenges faced by those living with MS or dementia. If you would like to be a part of H4H 2.0 either as volunteer, sponsor or mentor, please email Lisa Loiselle at loiselle@uwaterloo.ca. Check our new website at uwaterloo.ca/hack4health and follow us on Twitter @hack4healthuw and Facebook @hack4health!

15(2): Fall Issue 2016 ~ page 4

Address MAREP, University of Waterloo

Waterloo, ON, N2L 3G1

Telephone (519) 888-4567 ext. 35040

Website uwaterloo.ca/marep

Blog uwaterloo.ca/marep/blog

Twitter MAREP_UW

Facebook UWMAREP

Associate Director Lisa Loiselle, MA

loiselle@uwaterloo.ca

Administrative, Development and

Communication Support (provided

by the Faculty of Applied Health

Sciences, University of Waterloo):

Katherine Marshall, Executive Officer

Kirstie Slaney, Financial Officer

Wanda Deschamps, Director of Advancement

Christine Bezruki & Michelle Douglas Mills,

Marketing and Communications

Editing: Lisa Loiselle

Layout: Raman Sandhu Adriel Firtandi