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DementiaHack 2017: Making a difference with technology

DementiaHack 2017: Making a difference with technology

On March 4th, the doors opened bright and early at MaRs Discovery District for DementiaHack 2017. Throughout the morning, registrants trickled in, setting up their computers and discussing their plans for the upcoming 36 hour-long event. An annual event hosted by Hackernest, Dementia Hack is a competition to create innovative technology to help people with dementia, Alzheimer’s disease and other neuro-degenerative diseases. With over 300 developers gathered together to compete, the room was buzzing with eager participants, discussing and preparing their projects.

Opening remarks were led by Jordan Banks (Facebook Canada) followed by Mayor John Tory, Gerry Gallagher (Public Health Agency of Canada) and Kevin McGurgin (Dementia Hack). Each speaker noted how inspiring it was to see so many young and bright individuals working together to help people with dementia and their caregivers. The winners of the competition would receive a cash prize of $100,000 to develop their technology, but it wouldn’t just be them who won. Today, 564,000 Canadians are living with dementia, and even more people worldwide. With the help of the hard work of the developers at this event, many more resources and tools would be developed that could make a huge impact on the lives of people with dementia.

Pictured Above: Mayor John Tory speaking at opening remarks

At 10:30 am, the competition began, and each team started working on their projects. Around the room, were mentors from various backgrounds of expertise in the fields of dementia, health services and research. Team members approached mentors throughout the day to ask for their expert opinions on the design of their projects. Amongst the group of mentors, were Phyllis Fehr and Agnes Houston, who brought vital perspectives to each group. Phyllis and Agnes are both diagnosed with dementia and are prominent advocates for people with dementia and their caregivers.

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Pictured above: Agnes Houston (far left), and Phyllis Fehr (second left), advising a team at the event
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Pictured above: Developers at work on their application for the competition

The next day, the judges evaluated each project to determine who would take home the grand prize for the competition. One of the judges, Lisa Salapatek (Chief Program and Public Policy Officer at the Alzheimer Society of Ontario), spoke about the event and projects submitted:

“I had the honour of being a mentor and judge for the Family Caregiver Challenge set.  It turned out to be the most popular category with 20 teams competing, and their solutions and presentations were nothing short of amazing, ranging from in-home artificial intelligence and sensor systems to reduce safety concerns, to virtual scrapbooks and storytelling tools, to uber-inspired apps to help families access the support they need on demand.   There were long debates as the judges for each challenge set came together to come to come to a consensus on which teams would move on to the finals.”

After the judges had all met, the grand-prize winner of the competition was announced: Team Momentum, for their application, MemoApp. The application works by passively collecting and analyzing data about the person with dementia through natural voice recording, to help them and their caregiver better track the progression of their dementia, and to gather data for researchers to better understand the progression of dementia. The runner-ups in the competition were the applications: Bright Guide, Rescue and ConnectDem.

We look forward to seeing how these incredible applications will develop and what new and innovative ideas will be brought to next year’s Dementia Hack!

Missing the Signs

Missing the Signs

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.”

25,000 Canadians are diagnosed with dementia each year yet families often dismiss its symptoms as part of the natural process of aging.

My mother began showing signs of dementia six years before she was diagnosed but the disease crept up on her, hiding behind normal behaviour.  She had always been a little suspicious, slow to acknowledge her flaws. And gradually those traits became more pronounced.

“Why do you want to know?” she would reply to questions about where she had been or what she had been doing.

“Everybody forgets things sometimes,” was her usual response to an unusual memory lapse.

In those years, I was battling cancer.  I didn’t want to contemplate the possibility that my mother might be facing her own difficult battle.

After her diagnosis, I felt overwhelmingly guilty for not recognizing her disease sooner.  I remembered the times I had been impatient with my mother’s strange ideas; the hurt in her eyes when I was frustrated with her forgetfulness. I berated myself for my lack of empathy.

When my mother forgot to attend Grandparents Day at my son’s school – an annual event they both cherished – I had been furious. All I could think about were the tears that were surely rolling down my son’s cheeks when she failed to arrive.  I didn’t consider how she must have felt when I pointed out her mistake.

Preoccupation with my own health was my excuse for not confronting my mother’s disease but everyone has something in their life that makes it easy to miss the signs that a loved one might have dementia.

I’ve learned to forgive myself for my sometimes-willful blindness to my mother’s symptoms but perhaps if I had been better informed about dementia some of the heartache my mother and I endured could have been avoided.

Alzheimer Societies provide valuable support to families in need but sharing our experiences with the disease can also help to raise awareness – and may make someone else’s journey a little easier. For information and resources on Alzheimer’s disease and dementia, you can visit the Alzheimer Society of Ontario’s website.

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.

Staying Connected and Living With Dementia

Staying Connected and Living With Dementia

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.

My mother was embarrassed when she was diagnosed with dementia.  Rather than tell her friends about her illness, she stopped meeting them for lunch or coffee and declined their invitations to concerts and other gatherings. As her disease progressed, she became angry and paranoid. She withdrew from the church group that she had belonged to for over thirty years and refused to attend my son’s hockey games, school concerts and swimming lessons as she had always done.

My friend’s mother, Mrs. McEwan, was also diagnosed with dementia but she wasn’t embarrassed by her diagnosis nor did her symptoms include anger and paranoia. With the help of her friends, Mrs. McEwan continued to attend her book club and ladies auxiliary even when she was no longer able to fully participate in the meetings. She and her husband went to the symphony and the ballet and they joined organized tours to avoid the potential confusion of independent travel.

Over time, her memory gradually declined, until she was dependent on others to help her complete simple tasks. Despite this, she was always cheerful and she accepted her disease and the limitations it imposed with grace.

My mother and Mrs. McEwan had dramatically different experiences when they were living with dementia. Mrs. McEwan’s psychological well-being was fostered by staying connected with her community and participating in activities that she had always enjoyed. She had a positive attitude about her life, despite her limitations.  My mother resented her illness. She cut herself off from her friends and family, and felt isolated, lonely and depressed.

We can all play a role in reducing the stigma of dementia and making the lives of people who have the disease as rich as Mrs. McEwan’s. Educating ourselves about the symptoms and learning how to offer appropriate assistance will help people with dementia feel supported in our communities.  By fostering environments of inclusion in organizations, clubs and faith groups, as well as in common spaces like the library, coffee shop or grocery store, we can create environments that encourage their independence.

Together, we can work to create communities that are dementia-friendly and help everyone who is diagnosed live the quality of life they deserve. To learn more about how you can help contribute to a dementia-friendly community, contact your local Alzheimer Society.

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.

Forgetting an Unforgettable Recipe: Mamie’s Butterscotch Raisin Cookies

Forgetting an Unforgettable Recipe: Mamie’s Butterscotch Raisin Cookies

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.”

When I was growing up, my mother’s raisin cookies were a family favourite and making them was a regular Saturday afternoon mother-daughter event.

Instead of adding whole raisins to the butterscotch-flavoured dough, my mother used an old-fashioned meat grinder to mince the fruit. I would turn the handle on the grinder as she fed raisins into the mouth of the machine.  We would take turns stirring the thick batter and sing Patty cake, patty cake, baker’s man, as we patted the dough into a log.  When the cookies were in the oven, we would sit at the kitchen table and sip milky tea while we waited for the timer to chime.

Shortly before my mother was diagnosed with dementia, I asked her for the cookie recipe.  Her forehead wrinkled.

“I don’t know what you’re talking about, Elizabeth,” my mother snapped when I described the cookies, and how we used to make them, for the third time.

I was surprised and hurt that my mother didn’t have any recollection of the special times we had shared baking raisin cookies.  Although I dismissed her lapse of memory as “nothing to worry about”, the incident lingered at the back of my mind.

Sometime later, my mother’s geriatric clinician explained that forgetting the details of a significant event is part of the normal aging process, but forgetting the event ever happened is likely a symptom of something more serious.  I finally realized that my mother’s failure to remember our baking sessions was a symptom of her disease and not a sign that she hadn’t enjoyed our time together.

My mother’s loss of memory often left me confused and frustrated.  Looking back on my experience, I know that I would have been better equipped to deal with her symptoms if I had been familiar with the differences between age-associated memory impairment and dementia.

Not every memory lapse is a cause for concern but if you have questions about a loved one’s memory, you should consult your local Alzheimer Society for more information about Alzheimer’s disease and dementia.

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.

A Family Affair

A Family Affair

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.”

When my son, Davis, was young he used to say that he loved Mommy best, Grandma second and Daddy third. My mother returned his feelings tenfold.

Her devotion to him only increased as he grew from an infant to a toddler to a boy. Her house was transformed into Davis’ second home, complete with his own room, toys, books and clothes. She was constantly thinking up new activities for them to enjoy together – a large cardboard box was turned into their clubhouse and the basement rec room became an imaginary hockey rink.

After Davis started school, my mother attended hockey games, music lessons, choir recitals, and even some parent-teacher interviews. No matter how wonderful he was through the rose-coloured glasses of his parents, Davis was even more wonderful through my mother’s ruby-tinted lenses.

When Davis was in Grade 3, my mother forgot to attend Grandparents Day at his school – an event that they had both long anticipated. Davis was heartbroken, but my mother was contrite and he readily forgave her. The incident should have raised a large red flag but I chose to ignore the possibility of a larger issue.

Two years later, my mother was diagnosed with dementia.

As her disease progressed, she refused to come to Davis’ activities. She declined my invitations to visit my son at our house, as well as my offers to bring him to hers. Davis didn’t see my mother for months at a time and he missed her terribly.

“Why are you fighting with Grandma?” he often asked, thinking that their lack of contact might have had something to do with me.

In retrospect, I didn’t properly educate Davis about dementia or its symptoms. I tried to protect him from my mother’s drastic changes in behavior, but in doing so, I didn’t equip him to understand the progression of her disease.

Dementia affects families – not just the person who is diagnosed with the disease.  It is important that children and young adults be informed so they can better understand what is happening to their loved one.  With the help of your local Alzheimer Society you can find the resources you need.

Contact a local Alzheimer Society near you to learn more.

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.

I’ll Love You Forever

I’ll Love You Forever

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.”

I was pregnant when I first read I’ll Love You Forever, Robert Munsch’s book about the unconditional love between a mother and her son. I didn’t yet appreciate the bond I would have with my own child but the story brought me to tears as I thought about my relationship with my mother.  I vowed that I would always care for her just as she had cared for me.

I couldn’t have imagined what would happen twelve years later.

Shortly after she was diagnosed with dementia, my mother’s driver’s license was suspended. As she waited for me to review the Notice from the Department of Motor Vehicles, she sat on the couch in her living room, her arms wrapped tightly around her body.

“It’s just not right,” she sobbed.  “I didn’t do anything wrong.”

When I was young, I frequently woke in the middle of the night and imagined that a burglar had broken into the house and was creeping towards my bedroom.  I would call my mother and she would comfort me until I fell back asleep.

I wished that I could chase away her sorrow as easily as she had chased away my fears.

As my mother’s disease progressed, caring for her became a challenge. I was terribly hurt when she said that she wanted nothing more to do with me and I resented that she interpreted everything I did as acts of malicious intent. Sometimes, I was relieved when she wouldn’t let me into her house and I didn’t have to confront her. I constantly worried that I was breaking the vow I had made so many years before.

Enough time has passed that I now know I did the best I could in those difficult circumstances. I also know that the bond I had with my mother was strong, and that despite how our relationship changed, our love for each other never wavered.

I still think of my mother whenever I read I’ll Love You Forever. 

“For as long as I’m living, my Mommy she’ll be.”

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.

Make your Holidays stress-free!

Make your Holidays stress-free!

The Holidays are the perfect time of year to bring friends and family together to connect, catch up, and celebrate the coming New Year! For those with dementia it is just as important to be able to spend time with their loved ones.

But managing the extra stimulation a gathering can bring and making sure they enjoy themselves can sometimes be difficult. Family and friends may also be uncertain about how to act and what to say.

To help with these difficult situations and to make your Holidays stress-free the Alzheimer Society of Ontario has created 10 Holiday tips:

  1. Ask for their help with simple but important tasks like helping prep the meal, decorating the room, or cleaning up together
  2. Keeping rooms well lit can help with reduced vision and sun downing
  3. Have a quiet space available for the person with dementia if the gather becomes over stimulating
  4. Remove major distractions such as loud music or televisions.
  5. Keep the number of guests to a moderate size to make sure the gathering isn’t overwhelming
  6. A nap can help one feel more rested for the evening’s entertainment
  7. Having everyone sit and eat together will help make sure everyone is included in the festivities
  8. Serve your meal at your usual time to make sure not to upset their normal routine
  9. Share tips with family and friends to create better communication and minimize any concerns they have
  10. Have activities ready that are suited for someone with dementia, such as revisiting old family photos or telling stories

You can find more tips and gift ideas for the Holidays at the Alzheimer Society of Ontario Website.

Holiday Reflections – Guarding Memories

Holiday Reflections – Guarding Memories

As a child, I recall the holidays were about family traditions; the plump orange and the red delicious apple in the Christmas stocking, and if luck would have it a chocolate treat. This delicacy was sparingly consumed, to preserve the experience for as long as possible. There was always a small toy to open, and something wearable, and practical.

I recall spending hours, staring at the tree with the tangled jumble of coloured lights, and painted bulbs decorated with idyllic holiday scenes. Mom always cooked the perfect turkey with all the trimmings, and lovingly baked a fruitcake with pudding, as that was a British tradition.

At the age of fourteen, my father passed, and this recreated our holiday experience. On the first year, we attended the home of extended family members, and were embraced with attentiveness and love. Mom was a guest, and her apron for the first time, was neatly tucked in the broom closet. That year, there was no homemade cake loaded with candied fruit in the pantry.

The years progressed, and eventually I became the hostess and purveyor of the feast, although admittedly, I lacked my mother’s finesse for making it all look so easy. Slowly a new pathway was woven, and my childhood experiences were changing, as well as my responsibilities.

When mom began to exhibit signs of dementia, we realized traditions would not leave us, but rather they would need to evolve with her. As a family we would have to find a common ground, and learn to embrace the “new normal.”

As her disease progressed mom struggled with Christmas shopping, and was soon content to place the conquest for a perfect gift behind her. The last present she purchased for me was a pair of pink pajamas. I recall quite vividly how proud she was that “the prize” was so embraced. I do believe at times we forget that validation of one’s efforts is even greater than the gift itself. I recall keeping those pajamas for years; long after mom passed, as they were an amazing key to a wonderful moment in time. The fact they were tattered and faded did not diminish their value to me, and I must confess I anguished when it was time to let them go.

When mom required more care than we could manage, she entered a LTC home. Just before Christmas we would celebrate as a family, and bring her to the nearest sibling’s residence. It was there she watched with wonder, the ruckus of her children, grandchildren, and great grandchildren. Less verbal now, and sleepy at times, she observed with a twitch of amusement, before sleep would win and capture her attentiveness.

Eventually, as mobility became more difficult, our gatherings moved to the LTC home, because we relied more heavily on the professional care team to insure mom’s physical needs were met.

There were times, I mourned for the return of innocence, the tall fresh tree (most often tilting to one side), the vision of mom in her apron, stuffing a fat turkey with bread, celery, and spices, and the wonderment of believing in a saintly sprite with rosy cheeks.

It then occurred to me, that although my traditions were changing to accommodate various factors beyond my control, I was not losing my past, but rather creating my future. In spite of mom’s memory changes, her family remained the gatekeeper of her life’s stories. These tales were nurtured and shared with our loved ones, and through story telling, the next generation was being primed to take possession of this legacy.

As this holiday season approaches, may we be reminded to embrace the moments, rethink traditions, and go with the flow. As care advocates, we are more adaptable than our loved ones living with dementia.

Here are some tips to alleviate holiday stressors:

Balance Rest and Activity: The stimulation of noise, a potentially new environment, and the change in routine may contribute to added stress for a loved one with dementia.

Think about Meaningful Activities: Is there a familiar task that could be delegated to a loved one so as to promote inclusion in activities? Mom was always the queen of potato peeling, and felt her contribution in the kitchen was important and valued.

Remember physical needs: In a different environment, gentle cueing to the bathroom location may be needed.

Be flexible: Would a luncheon be less tiring than a sit down supper? Is the option of potluck available?

Embrace what is: I think one of the most important lessons I have learned through this journey is that mom’s capabilities changed as dementia progressed, but she was still mom. Dementia could not take that away. Our story is never truly lost. It is like an inspiring novel, filled with adventures, laughter, sorrow, pain, and at times embellishments, depending on the weaver of the tale.

And so, in tribute to those who love someone living with dementia, I honour you as the gatekeeper of their memories. This poem is for you…

Guardian of Memories

I am the guardian of memories.

Lovingly the precious keys are fortified,

And I will carefully secure their rightful destiny.

Erosion, cast not shadows on my doorstep.

 

I am the guardian of stories.

Those vivid tales of rich adventures past,

Golden threads and woven reminiscence,

Valued above all monetary reckoning.

 

I am the guardian of heritage.

Traditions honoured, past and present merging,

Successors nurtured, ever-watchful vigilance,

We will find our rightful place in history.

 

I am the guardian of the future.

And in years to come when I am softly beckoned,

To find my rightful place beyond the stars,

My essence lives and legacy continues.

 

For we will not relinquish all our memories,

Circumstance or chance will not prevail.

A disease will hold no credence here, no merit,

Our stories will continue on their journey.

 

Seasons Greetings…

 

Ann-ChartierAnn Chartier has been a practicing Registered Nurse, for almost 4 decades. As the founder of Elderpilot.com she advocates for people living with dementia and assists Seniors navigating LTC and Retirement Homes.

Ann was a Family Support Counselor and Education Lead/Writer with the Alzheimer Society Niagara Region. (2012-2015) She continues to be a guest speaker, Alzheimer Society Volunteer and shares her stories from the eyes of a care advocate for her mom.

 

Finding Your Way through the winter season: tips for staying safe with dementia

Finding Your Way through the winter season: tips for staying safe with dementia

Stay safe this winter with these helpful tips!

Winter is on its way, bringing with it snow, sleigh bells, and a renewed importance around being safe in our homes and communities. To prepare, we’re putting snow tires on our cars, pulling winter boots out of storage, and stocking up on salt for our sidewalks and driveways – but for people with dementia, those safety steps go a bit further.

If you’re living with dementia or helping to care for someone with dementia, here are some important factors to maintain safety in your community through the winter.

 

Clothing

Proper clothing is one of our first levels of protection in inclement weather – so be sure to pull the sweaters, winter coats, boots, hats, scarves, and mitts out of storage so that season-appropriate clothing is close at hand. Footwear considerations are extremely important – find boots with good grip, that are well-insulated, and with velcro instead of laces for ease. For those items like hats and mitts that seem to disappear, purchase a few extras so that you’re never without. It’s a good idea to buy clothing items that are brightly coloured or distinctive in some way – if someone with dementia gets lost, it will help as an identifying marker.

If you see someone in the community this winter who isn’t dressed properly for the weather, they may need assistance. Visit our Finding Your WayⓇ website to learn how to help someone with dementia who may be lost.

 

Sundowning

Sundowning refers to the time period – usually later in the day – when confusion and agitation increase for people with dementia. With less sunlight and shorter days during the winter months, sundowning can be exacerbated, but there are ways to help ward it off.

Keep curtains open as much as possible during the day to let in sunlight. Turn lights on in the home earlier in the evening, and consider purchasing a special light box to provide specialized light therapy. If applicable, ensure that outdoor walkways around the home are well-lit, and consider adding motion-detected lights outside. Remember that people with dementia often have issues with visual perception, so helping to keep homes well-lit indoors and out is extremely important.

 

When Outside

  • Dress appropriately for the weather
  • Use handrails to walk up and down steps, when available
  • Step carefully into snow – snow drifts can hide uneven surfaces
  • Avoid or walk carefully on unsalted areas – shadowed areas can still be icy even if temperatures are above 0 degrees
  • Consider purchasing a walking aid to help with balance while walking during the winter

 

Inside The Home

  • Keep heat at a comfortable level
  • Be sure that space/electric heaters are checked regularly, and do not place them in areas where someone can trip over them
  • Make sure the phones are connected properly and cell phones are charged well to maintain communication
  • Keep wet boots on heavy duty mats to avoid slipping in puddles – but make sure all mats lay flat to avoid tripping hazards
  • Don’t spend too much time indoors – when it’s safe, take some time to get some fresh air and a change of scenery

 

These tips are just some of the ways that people with dementia can remain safe and active during the winter months. Don’t forget to consider the use of locating technologies – a cell phone, door sensor, or GPS tracker may be helpful to avoid a wandering incident or to help find someone who has gone missing. Want to learn more? Visit the updated Finding Your WayⓇ technology page!

Winter is a beautiful season, and meant to be enjoyed – so be safe, and have fun!

Their memories fade, but love remains

Their memories fade, but love remains

Donate today to help find a cure.

When the doctor first told my Mom, “You have Alzheimer’s disease,” I was numb. There I was, only 30 years old, with a newborn son and a mother whose memory was starting to fade.  I tried to Google as much as I could about the disease, but panic came the second I saw the words: There is no cure.

As hard as this is to talk about, I agreed to share my story with you because I want to see a world without Alzheimer’s disease and other dementias.

Caron & Marlene

Please make a donation today. Your holiday gift to Alzheimer Society of Ontario will help fund life-saving research focused on prevention, better treatments and, ultimately, a cure. Your contribution will also help women and men across the province that face this devastating disease by providing support programs and services.

This time of year is especially hard. I have such fond memories of our family’s special Christmas traditions but that has all changed since Alzheimer’s took hold of Mom 15 years ago.

My Mom is now in the late stages of the disease. She has forgotten how to walk and is confined to a wheelchair. She can’t remember how to chew so even eating is difficult.

Alzheimer’s disease impacts so many people. And chances are you or someone you know will be affected.

I hope you will join me in donating now to help bring hope and improve the lives of people like my mother.

Thank you,

Caron Leid
Caregiver to my mom, Marlene, since 2000