Happy Holidays!

The Importance of Tradition: A Journal Entry

I love tradition.  I come from and am part of a family of traditions.  Growing up, holidays were always  a time of making the same yummy recipes, putting up the same Christmas tree, visiting the same people, telling the same funny stories, and putting up the same homemade Christmas stockings for Santa to fill.

As I grew older, I took with me many of these traditions and eventually introduced them to my own family.  One of my favourite tradition is decorating our Christmas tree.  Eight years ago, when we celebrated our first family Christmas together, we began the tradition of going to a local tree farm to buy our Christmas tree. 

Now remember, global warming had not affected the weather as much, so we had something called “snow.”  The tradition began at the house with the pulling on of big coats, boots, hats, mitts and snow pants.  You always hoped you didn't have to go to the washroom!  Our two dogs, Leo and Riley, also had a special outfit for the event.  Both dogs had their sweaters and Christmas bells put on them.  We laughed as they began their dance trying to get the bells off of their legs. 

We all piled into the van and the Christmas sing-song began.  The tree farm was fairly close so in no time we arrived to a very busy scene.  People, trees, dogs and snow.  What a wonderful, chaotic place!  We quickly filed out of the van and rushed to the opening of the farm.  This is where I would put Brianna into the sleigh we had brought and began to “mush.”  With the dogs prancing beside us, we began to inspect the many trees until finding the perfect one.  At a young age, I always encouraged Brianna to be independent.  With my assistance, she would lay down on the cold snow and begin to saw the tree trunk.  Down it would come with a collective “yeahhhh” from all of us.  We always liked to count the rings on the tree to know how old it was.  For some reason, this was important. 

The tree would then be moved onto the sled to be towed back to the point of entry so we could pay for it.  I always loved that walk back.  The cold, the snow falling softly, the sounds of the dogs bells, and the excited chatter of my family.  I felt at peace.

Once we arrived back, we would proceed into the small building to have hot apple cider.  How wonderful it tasted.  Brianna would then walk through the isles of Christmas decorations and pick out the one she would like to take home with her.  Every year, Brianna still picks out one Christmas ornament to adorn the tree.

The tree would then be strapped to the roof of the van, and we would all pile back into it and head for home.  From the roof, it would be moved into the garage for a day so it had time to fall. 

Once it is time to decorate the tree, family members take on specific roles.  Dawn, is the individual who hands out the tree ornaments to Brianna.  She also has the very important job of ensuring the tree is straight and if not, to coordinate the efforts to make it so.  For some reason, our tree always seems to have a bit of a tilt.  Brianna is the “hanger.”  It is her role to take the ornaments from Dawn and then find a special place on the tree for each and everyone.    Dawn usually helps out with instructions from the couch.  My role starts at the very beginning and goes to the end of the process.  It begins by taking out all of the boxes from storage and moving them into the family room.  Then, from the garage, I take the Christmas tree into the house and put it into the tree stand.  Next, I put a string of lights around the tree and make sure it looks even.  Then my girls join me and the decorating begins.

During the time in my life when I travelled around the world for work, I collected Christmas ornaments.  Over the years, I have accumulated some really beautiful and unique ornaments.  Our family tradition is for me to is take each of these ornaments, prior to the their positioning on the tree, and to provide the history of the ornament.  It comes with the where and when I obtained these special treasures.  Each year, bulbs from South Africa, Mexico, England, The Netherlands, Ireland, Texas and Bethlehem are dusted off and placed in their spot of honour. 

The other special bag that is brought out from its box is that containing Brianna's homemade ornaments.  We all laugh and smile as we pick up each ornament and Dawn reminisces of the stories behind the little gems.

The final, most important moment is shared with Brianna and myself.  It is the adorning of the tree with the Christmas angel.  When Brianna was little, I used to lift her up and she would place it on the top of the tree.  But, now that she is 18, I just stand beside her as she does her work.  And of course, a picture is taken of the yearly event. 

Today, the three of us enjoyed this special day of Christmas tree decorating.  Unfortunately, for the last three years we no longer venture to the tree farm but rather buy a pre-cut tree from a lot. 

Today's event was a bit different as we added a new element to it.  For the first time, we video taped it.  Without saying it, we sensed the importance of capturing this beautiful moment this year.  We are keenly aware that we do not know what Frontotemporal Dementia (FTD) will bring over the next year.  In fact this year, a few variations had to take place to work around FTD.  Brianna took over my role of ensuring that the tree was straight and properly secured.  My sense of frustration was high and I found it hard to tighten the tree holder bolts.  Also, there were fewer decorations on the tree this year.  It is so easy to be over stimulated that less is always better - even on the Christmas tree.

I must say a bit of a sense of relief has come to me.  No matter what life brings to me, I know  my stories of the Christmas ornaments will be passed down through generations.    The important tradition of the tree decorating will continue - no matter what. 

12 Days of Health and Wellbeing

As the holiday season approaches, the University of Waterloo’s Faculty of Applied Health Sciences understands that a busy lifestyle and the added demands of the season can put stress on our mind and bodies. Our gifts to you: a reminder to take some time to take care of yourself, and some friendly tips on how to protect and nurture the ultimate gift: your health. 

Watch the videos: 12 Days of Health and Wellbeing

In the Day #4 video, the Director of MAREP, Dr. Sherry Dupuis, suggests ways that you can help make the holiday season more enjoyable and comfortable for older adults in your family.

Watch the video: Supporting Older Adults During the Holiday Season

Happy Holidays!

Considerations for the Holidays for Families of Persons with Dementia

1. Take your time. Synchronize your pace to that of your family member with dementia. The holiday season is about enjoying quality time with family and friends, and excessive entertaining activities can be overwhelming.
2. Plan one activity at a time. Multitasking can lead to frustration.
3. Understand if your family member doesn’t seem to appreciate the efforts of preparing an elaborate dinner. They may be happy to just be in your company and get anxious with all of the activity and fuss involved in meal preparation. On the other hand, they might really enjoy helping with the preparations for the holiday meal.
4. Consider the noise level and multiple distractions. These can impact a person with dementia
   when large groups of family or friends are gathered together and do not be offended if your family member wants to go home immediately after eating dinner.
5. Be considerate of the words “do you remember.” Do not pressure a person to reminisce and
   remember specifics if the memories do not easily come. Consider reflections based on phrases like “I remember when we used to go to…” or “How I enjoyed that holiday when we….”
6. Share photo albums of previous holiday celebrations. This can assist with a relaxing form of
   reminiscence.
7. Allow for a quiet space for a family member with dementia to relax. They may need a brief time to rejuvenate to continue with the activities of the season.
8. Set priorities and a routine for the holidays in advance. Decide what is most important for you and your family member with dementia and focus on those priorities.
9. Include the person with dementia in decisionmaking and priority setting around the holiday plans. Listen--really listen--to their preferences and hopes for the holidays.
10. Have fun!

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

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

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.

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