Friday, 4 January 2013

Personal Stories from People Living with Dementia - Part of January Alzheimer Awareness

Over the years, MAREP has been very fortunate to have met people who inspire the work that we do at MAREP and who challenge us to find innovative ways to help support those living with dementia in making a difference not only for themselves but for others who are living with and/or affected by dementia.

As part of January Alzheimer Awareness month, we thought we would feature on our blog some inspirational stories - personal stories submitted by our partners living with dementia throughout the course of the month.

You will find that each person's journey and experience living with dementia is very different as we are all unique individuals, yet you will also note some similarities.  We hope that by reading these stories, you will be able to gain a better understanding of what it is like living with dementia and how all of us - those living without or with dementia - can partner together to ensure that people living with dementia can lead a very fulfilling and meaningful life!

Tuesday, 18 December 2012

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.

Photo of Christmas tree with lights and gold and red decorations

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. 

Friday, 14 December 2012

12 Days of Health and Wellbeing

Banner image: 12 Days of Health and Wellbeing from the faculty of Applied Health Sciences

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!


Wednesday, 28 November 2012

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!

Thursday, 22 November 2012

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










Wednesday, 7 November 2012

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


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