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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

Research Video Series: Introducing Laura Hamilton

Research Video Series: Introducing Laura Hamilton


Dr. Laura Hamilton is testing the efficacy of a new therapeutic target (stearoyl CoA desaturase (SCD)-1) to improve learning and memory deficits in Alzheimer’s disease using a mouse model. Laura is a postdoctoral fellow at the University of Montréal and is this year’s Alzheimer Society Research Program Spark Award Recipient.

The potential to contribute to a better quality of life for millions of people motivates me every day.
-Dr. Laura Hamilton

Dr. Laura Hamilton

Spark Postdoctoral Fellowship in Alzheimer’s Disease (Biomedical) – $100,000
Project: Triggers and behavioural consequences of elevated oleic acid in the Alzheimer’s disease brain

Read about more of our grants and awards recipients here.

We are Thankful for You!

We are Thankful for You!

Thanksgiving Fall Couple

Fall is a spectacular time of year in Ontario! The leaves begin to change and despite the air getting a bit cooler, time spent with family and friends makes it clear that this time of year is full of warmth.

Thank you!

This season of Thanksgiving we are reminded of how grateful we are for our family of supporters at Alzheimer Society of Ontario. Whether you have supported us through an event, are a monthly donor, subscribe to our blog, volunteer, have remembered us in your Will or have #RaisedAMug for Alzheimer’s – WE THANK YOU!

Your generosity helps to change the lives of 564,000 people across Ontario affected by dementia. Our province is home to world-leading researchers working to halt or treat this disease. Others are finding ways, both practical and inventive, to improve quality of life for caregivers.

Here are some of the ways you have impacted Alzheimer’s research.

Unlocking the mysteries of the brain

Since 1989, we’ve awarded more than $50 million in grants to researchers across Canada through the Alzheimer Society Research Program.

Over the duration of the program, these researchers have helped to:

  • Identify potential new drugs to slow the progress of Alzheimer’s disease
  • Develop techniques to distinguish different forms of dementia using neuroimaging, enabling more targeted treatments for people with dementia
  • Show how diet and other lifestyle choices may delay the disease
  • Develop technologies to enhance the quality of life, care and safety for people affected by the disease
  • Improve care delivery in the community and in long-term care settings

 

Meet a Researcher

Thanks to support from our donors and the Alzheimer Society Research Program, Dr. Frank Rudzicz, is currently developing artificial intelligence software to help people with dementia that experience difficulty communicating with others.

Frank Rudzicz
Pictured above: Dr. Frank Rudzicz

Dr. Rudzicz has designed voice-based software to “converse” with a person and assess their speech for this language disability and for language problems associated with memory loss. Pilot tests show it gives accurate and early diagnoses.

Changes in the brain resulting in dementia begin up to 25 years before most symptoms appear. Rudzicz thinks his software could help catch those changes early so people can get treatment at this stage.

You can learn more about his project by visiting his researcher profile or by watching his research video.

This incredible research and others like that being done by Dr. Rudzicz would not be possible without you. Thank you again for your wonderful support!

 

Why I work for the Alzheimer Society

Why I work for the Alzheimer Society

Elizabeth Barrie is a First Link® outreach worker for the Alzheimer Society of Oxford. She shares her personal connection to the disease.

What is your connection to Alzheimer’s disease?

My mom was diagnosed with Alzheimer’s disease when I was parenting three young daughters. I had to juggle the expectations of motherhood with the demands of supporting my parents as they navigated the uncharted waters of dementia.

Never one to complain or dwell on the negative, Mom continued to participate actively in her community, writing for the newspaper, playing the piano at church and helping to lead choirs.  Remaining active, socially and physically, was essential to Mom’s health and well-being throughout her journey.  In spite of the changes in her brain, Mom did all she could to care for her family – and what she couldn’t do, Dad did for her. Their 15-year journey with Alzheimer’s disease was a labour of love for both of them.

What were the initial warning signs that led you to believe your mother’s health was changing?

She began taking notes when she and I would have conversations over the phone.   When I asked her questions she would read from her notebook about the conversations she’d had with other family members rather than respond from memory.

Mom also began repeating stories and had difficulty finding words, which progressed over time.

Soon after her diagnosis, I remember finding Mom trying to open a can of soup using a hammer and nail. She didn’t recognize the manual can-opener in her kitchen drawer.  This was a stark reminder that Mom’s changing brain was going to make even smallest tasks harder to complete, especially in the kitchen.

What support, if any, did you access?

I remember the day I drove to the Alzheimer Society office without an appointment and entered feeling completely overwhelmed and scared. A woman on staff made time for me right away, answering my questions, validating my feelings, and sharing my tears.

I had held it together as long as I could, but when I reached my breaking point, I needed somewhere to turn with someone who would understand and could help.

The Alzheimer Society provided all that I needed and more.  I was sent home with resources to read and share with my family, tips to engage Mom and above all reassurance that we were not alone.

Follow-up calls and opportunities for myself and all the members of my family to access education and support came as needed.  This help proved invaluable over the course of Mom’s journey.

As a family, we learned to live “in the moment” with Mom.  We understood the importance of music, family, laughter and conversation, and we engaged Mom in as many ways as we could, for as long as we could.

When we were lacking information, the Alzheimer Society provided it for us. They shared helpful coping strategies and tips, lending a listening ear at the times when we felt depleted of strength. This was a gift.

Read more stories like Elizabeth’s.

elizabeth-barrieElizabeth Barrie

First Link® outreach worker

Alzheimer Society of Oxford

Dementia: coming to a workplace near you

Dementia: coming to a workplace near you

The new office computer system shouldn’t have been a problem for Diane. She had been training new employees on how to use the company’s software for 20 years. But now she was having problems offering price quotes and making calculations over the phone. What’s more, Diane noticed that she was having some trouble remembering things at home.

When her husband finally convinced her to go to doctor about her memory issues, she was diagnosed with Alzheimer’s disease. She kept working with help from co-workers. Then one day, after misquoting a price five different times, an angry caller described her as stupid and having no business working there. Her manager, too, was angry and called her out. Diane was devastated and resigned two days later.1

Could this situation have ended differently?

Our Workforce Aging

Employed Canadians over the age of 55 made up 10 per cent of the workforce in 2000, but that share rose sharply to reach 16 per cent in 2011.2

With age being the primary risk factor for dementia, it’s only a matter of time until dementia will be impacting a workplace such as yours. Although the majority of people with dementia are diagnosed after 65, 10 per cent of all cases strike before the age of 65, in the prime of working life.3 The elimination of a legislative age of retirement means more workers will be at risk of developing dementia. Financial stress and personal preference are also keeping people at work longer.

The Alzheimer Society is working with employers and other stakeholders to get ahead of the curve on this important issue. We know that work can be a person’s greatest source of self-worth and social networks. Losing one’s job, on top of a devastating diagnosis of dementia, can leave a person feeling undervalued and socially isolated.

For some kinds of work, for example, accommodations can be made to keep a person with dementia working. These include:

  • providing a quiet working environment;
  • relying on his or her old abilities rather than assigning new tasks;
  • maintaining a familiar work routine;
  • providing calendars and to-do lists;
  • reassigning tasks that are too difficult.

Employers should realize, however, that although a diagnosis of dementia does not automatically mean someone can no longer work, the end result will ultimately be that he or she leaves the workforce. Our goal is not to keep people with dementia working indefinitely, but to help workplaces make accommodations that will give employees more control over the timing of their exit. This will create a win-win for the individual and for the employer, who will be able to keep talented people engaged and contributing to the organization for as long as is feasible.

By creating a positive work environment in which dementia is understood, employees will feel empowered in the situation and employers will be able to retain important experience and assure a smooth transition, which will minimize disruptive and painful departures for all involved.

The Alzheimer Society is developing resources for employers and employees to address the emerging issue of dementia in the workplace. To learn more about this issue, visitwww.dementiaintheworkplace.ca. I also will be speaking on this issue at the upcoming Conference Board of Canada conference on Benefits and Disability Management 2014being held in Toronto on October 20 and 21.

If you would like to get involved with our initiative, e-mail me at dharvey@alzheimeront.org.

DSC_0258 (edited)David Harvey

Chief, Public Policy and Programs Initiatives at the Alzheimer Society of Ontario

Help reform capacity and decision-making laws

Help reform capacity and decision-making laws

As my father-in-law aged, and when he developed dementia, my husband became his primary caregiver and power of attorney. I’m a lawyer who has devoted a significant part of her career to research and public policy work on issues related to disability, aging and caregiving. There’s no doubt that my professional background was useful as my family tried to understand what everyone’s rights and responsibilities were at each step of the way, find the necessary services and resources, be good advocates, and do the right thing for someone that we loved. But it was surprising how difficult it often was, even so, to find the right information, understand the choices available, and navigate all of the complicated systems at play.

I think about this experience often as I work on developing reforms to law, policy and practice around legal capacity and decision-making. I know these challenges are ones that are shared by many other Ontarians. When the Law Commission of Ontario did public consultations in 2011 on issues related to older adults and the law, concerns about legal capacity and decision-making were identified as urgent by many older adults, family members and professionals: that’s why we undertook this project.

As my experience, and that of many others illustrates, there is always a gap between the law as it is envisioned by the drafters, and the law as it is implemented and experienced on the ground. For laws to meaningfully address people’s needs, and to do so in a way that is clear and fair, they have to take into account the everyday experiences of all of the different people that they touch.

This is one of the reasons why the Law Commission of Ontario believes that everyone should be given the opportunity to be part of the development of laws that touch their lives. To help us to understand what works and doesn’t work in the law about capacity and decision-making, and how this law can be improved, the Law Commission wants to learn from the experiences and perspectives of those most directly affected, including family caregivers, people who receive assistance with decision-making, professionals, service providers and experts. Please tell us about your experiences and your aspirations for change by filling out our consultation questionnaires at http://www.lco-cdo.org/en/capacity-guardianship.

Lauren BatesLauren Bates, Senior Lawyer

Law Commission of Ontario

The power of music to support people with dementia

The power of music to support people with dementia

PIC_iPodBlog

Mom is on the ipod program and I can’t thank you enough.  When she is agitated, I turn her iPod and she starts dancing and humming away.
-Daughter of woman with dementia

Have you met someone who didn’t like music? I haven’t.  A love of music is hardwired into the human psyche. People with Alzheimer’s disease or other dementias are no different.

Two years ago at our offices in Toronto, I watched Dan Cohen, founder of Music and Memory in New York City, present at our office and share with us this simple yet powerful concept: the hidden power of music to bring back memories can improve mood, speech and cognition of people with dementia.

What’s the science behind this claim? Dementia affects established pathways of speech and other mental functions. Music therapy is effective because it connects to speech and other lost functions through different neural pathways that the disease has affected in the same way.

Today, iPod programs are springing up in different Alzheimer Societies across the province.  It’s exciting to see this idea improve the lives of so many Ontarians with dementia.

Here’s a list of the local Alzheimer Societies who offer them:

 

If you want more information about an iPod project or other Alzheimer Society services in your area, contact your local Alzheimer Society.

A celebration of creativity

A celebration of creativity

3 canvases created by healthy seniors engaged in creative arts

On July 4 to July 27, 2014 we celebrated our 10th anniversary of our Society for the Arts in Dementia Care at the Ferry Building Gallery in West Vancouver, BC, with the kind support from the Alzheimer’s Society Research Program and the West Vancouver Community Foundation. For 3 weeks we exhibited highlights of the Society’s permanent art collection, which was established with the help of the Alzheimer Society of Canada several years ago.

The idea for the Society originated in British Columbia in 2003. It grew out of my own experience. I developed a program of Creative Expression Activities in my work with seniors with dementia. I was also supported by the Alzheimer Society of Canada through my graduate studies. Over the years, my main goal was to engage a wider audience of professionals and practitioners in exchanging ideas and strategies to be addressed in dementia care with a focus on the creative arts.