Matthew Vorstermans and his grandmother had a very special bond.
“My Oma lived in Pittsburgh during most of her life and I only saw her about once or twice a year,” Matthew explains. “Despite the distance between us, we maintained a great relationship. We wrote letters to each other and talked on the phone all the time. There was never a time where we’ve held a grudge or anything; we’ve always gotten along.”
Matthew was born with Cerebral Palsy, and sites his Oma as a great role model and support as he grew up. “She didn’t care that I had a disability. She was proud to have a grandson—before me she had only had granddaughters. The fact that I am disabled, she was indifferent to that. She said, ‘I finally have a grandson and I love that.’”
“All my life, Oma had always been right there to give me comfort, reassurance and companionship.”
The signs of dementia started to present themselves slowly. She struggled to recall details about her life, and her own family. That’s when Matthew decided to reach out to the Alzheimer Society, to help him understand the disease that was impacting his grandmother.
It was not long before the disease began to take a toll on his grandmother’s short term memory. Eventually she didn’t remember Matthew at all. That, along with the distance, took a toll on Matthew.
“As the disease progressed, in the last six years of her life, she moved to Nova Scotia. I wasn’t able to see her as frequently. I felt guilty. It was very painful.”
“I wanted to do something about the situation.”
Matthew contemplated how he could turn the feelings of sadness and helplessness into positive action.
“It took me a while to arrive at the conclusion, but I finally decided that as much as I’d like to be with and comfort Oma, I can’t, but I can do that for somebody else.”
Matthew contacted the Alzheimer Society of Simcoe County and began to volunteer, fundraise, and actively seek out opportunities to speak about his experiences. He began participating in the Walk for Alzheimer’s in 2007. Since then, he’s single-handedly fundraised $27, 815.36 for the Alzheimer Society.
“I’ve met a lot of people, particularly at the Walk for Alzheimer’s, who tell me that they like what I’m doing. They may have lost their husband or wife only a couple months ago, which is why they’re walking. I think it’s important to realize that, as painful as it is, you don’t have to wait until your own personal experience is over. You can turn that pain into positive action whenever you feel like it. It may even be therapeutic for you. It certainly was for me.”
“It is never too early, or too late to get involved.”
This year the Alzheimer Society celebrates 28 years of funding research through the Alzheimer Society Research Program (ASRP). The peer review panel meetings were held in February 2016 in Toronto, Ontario, and included the role of Community Representatives. Community Representatives are members of the general public who are not currently involved with research who are given the opportunity to comment on the intent, purpose and on the clarity of the language used within the lay summaries of research applications that are received by the Society. Their involvement in peer review serves as a mechanism for public accountability by providing feedback on the ASRP peer review process.
It is with great pleasure that we introduce our 2016 Community Representatives:
“I was amazed at the breadth and scope of research projects which were received from researchers across the country. I had no idea of the extent of this endeavor but, on a personal level, very grateful that so much work is being done to identify the cause of the Alzheimer problem which may one day lead to a cure.
Even more impressive to me was the expertise and dedication of the panel members to review the various proposals. Each panel member must have spent countless hours doing so liaising with colleagues, analyzing what was being proposed and bringing to the table an informed judgment.
The process itself was unique in that it set out to be fair by applying a scoring system from the start and laying out ground rules for conflict of interest which were meticulously followed. Over the years I have participated in many organizations working to allocate their resources to new programs or research proposals but your Peer Review Process is truly tops.”
-Neville Chenoy, 2016 Community Representative, Biomedical Peer Review Panel Neville is living with Mild Cognitive Impairment. He is a retired health care consultant living in Toronto and attends support groups hosted by the Alzheimer Society of Toronto.
“Funding research on Alzheimer’s disease and dementia is important to me because it is not a clearly defined or understood disease and more information is needed.
It was a pleasure being a part of the Peer Review Panel. Thanks to those who made us feel welcomed – a memory I shall never forget …I hope!”
-Sherri Russell, 2016 Community Representative, Quality of Life Peer Review Panel Sherri is living with Mild Cognitive Impairment. She formerly worked in Real Estate. Sherri enjoys playing bridge, writing, exercising and staying social.
Des représentants de la collectivité participent au Programme de recherche de la Société Alzheimer 2016 (PRSA)
Le Programme de recherche de la Société Alzheimer finance la recherche depuis maintenant 28 ans. Des représentants de la collectivité ont participé aux réunions des comités d’évaluation par des pairs, qui ont eu lieu en février 2016 à Toronto (Ontario). Les représentants de la collectivité sont des membres du grand public qui ne participent pas actuellement à la recherche. Ils donnent leurs commentaires sur les intentions et les objectifs des projets de recherche soumis et sur la clarté du langage utilisé dans les résumés simplifiés. Leur contribution au processus d’évaluation par des pairs fournit un mécanisme de reddition de comptes auprès du public.
Nous sommes très heureux de vous présenter nos représentants de la collectivité pour 2016:
« J’ai été frappé par l’ampleur et la portée des projets de recherche soumis par les chercheurs de tout le pays. Je ne m’attendais pas à une telle activité. Je dois dire que je suis personnellement très heureux de l’importance des efforts déployés pour mieux comprendre la maladie d’Alzheimer. Un jour, il sera possible de la guérir.
J’ai été encore plus impressionné par l’expertise et le dévouement des membres du comité chargé d’évaluer les divers projets soumis. Chacun des participants doit sans doute consacrer de nombreuses heures à cet exercice, pour assurer la liaison avec les autres membres du comité, faire l’évaluation des projets et apporter un jugement éclairé au cours des discussions.
Le processus d’évaluation est unique en ce qu’il applique un système de pointage pour assurer des conditions équitables, et des règles strictes pour éviter les conflits d’intérêts. Au fil des ans, j’ai participé à de nombreux groupes de travail chargés de l’allocation des ressources destinées à de nouveaux programmes ou à des projets de recherche, mais votre processus d’évaluation par les pairs n’a vraiment pas son pareil. »
-Neville Chenoy, représentant du public 2016, comité d’évaluation par les pairs, volet biomédical Chenoy est atteint d’un trouble cognitif léger. Consultant en soins de santé, il est maintenant à la retraite et participe à des groupes de soutien offerts par la Société Alzheimer de Toronto.
« Le financement de la recherche sur la maladie d’Alzheimer et les autres maladies cognitives est important pour moi, parce que ces maladies ne sont pas clairement cernées ni comprises et qu’il est nécessaire de pousser plus avant.
J’ai été ravie de faire partie du comité d’évaluation par des pairs. Je vous remercie de nous avoir chaleureusement accueillis. Je n’oublierai jamais cette expérience… enfin je l’espère. »
-Sherri Russell, représentante du public 2016, comité d’évaluation par les pairs, volet qualité de vie
Mme Russell, qui est atteinte d’un trouble cognitif léger, travaillait auparavant dans l’immobilier. Elle aime le bridge, l’écriture, l’exercice et les activités sociales.
It is difficult to understand Alzheimer’s disease until you are living with someone who has it. For me it was when my Grandma got it. She had lived with us for my entire life, and played a huge role in my upbringing.
First it was the little things, simple tasks that we take for granted, such as preparing a meal. While I could deal with changes like that, the hardest part was accepting that someone who had always protected and cared for me had suddenly become someone I had to take care of.
For a long time, I wanted to ignore her struggles, hoping that if I closed my eyes to the changes happening right in front of me, I could prevent them from happening altogether. But I soon realized that with a progressive disease like Alzheimer’s, change was inevitable. Knowing that her condition would deteriorate gave me the strength to overcome my own fears and help her.
And helping care for her only brought us even closer. Although her behaviour changed, her identity remained and she was still a person like everyone else. While many of her memories were no longer accessible, I could still remember for her. And sometimes, she would remember too.
For many people, a serious disease like Alzheimer’s becomes an emotional fork in the road. You can choose to turn your back on someone or you can choose to embrace them.
It can be far too easy to turn our backs on those who are suffering, particularly for young people, who may consider themselves too far removed from the suffering of the elderly. However, it is important for young people to face the challenge and look on dealing with the disease as part of their own personal road to growth.
Caring for my grandma has helped give me amazing insight into the struggles of those diagnosed with Alzheimer’s disease, and I truly hope I can use this knowledge to help others, both the patients themselves, and those who have yet to have any first-hand experience with the disease.
Want to share your story? Contact Ryan MacKellar (email@example.com).
When the Alzheimer Society of Ontario began the Champions for Dementia initiative in 2010, we were seeking to engage people with lived experience of dementia in advocacy activities with their Members of Provincial Parliament (MPP) and the Ontario government.
I remember receiving notice from the Alzheimer Society of Oxford that they had identified a perfect candidate to be their Dementia Champion – Al Burridge.
From day one, Al was a model Dementia Champion. Soon after joining, Ontario had an election. While Al was volunteering at a local fundraising and awareness event known as Coffee Break®, staff member Beth Haas remembers he had a natural ability to identify electoral candidates and talk to them about dementia. “The weather was good that day so Al and I set-up outside for a few hours during Coffee Break. Al not only recognized the candidates, even the lesser-known ones, but nabbed them to tell them about dementia and how the Alzheimer Society is advocating for improved care. He was charming, well-spoken and literate; no one could dismiss him or sidle off! ” remembers Beth.
Locally, Al was involved as a spokesperson. He met with his MPP several times, was guest speaker at the Alzheimer Society of Oxford Golf tournament, and was MC at the intergenerational Choir performance. He also spoke with media, including Heart FM, Rogers TV, and local newspapers. Whatever the task, Al assumed his role with great gravity and earnestness. He always reviewed what the present focus was, ensuring he understood the message so he could convey that to his listeners. He was 100% convincing because he truly believed the message.
He recognized that to effect change he needed to be heard at both the provincial and national level. He worked with our National office to develop an ethical framework for engaging people with dementia in Alzheimer Society work, and he had recently expressed interest in joining an advocacy group led by people living with dementia called the Ontario Dementia Advisory Group. This group is focused on the development of an Ontario Dementia Strategy and actively advocates for the engagement of people with dementia in public policy decision-making that will affect their lives.
On April 10th of this year, Al and staff member Robyn Fox met with their MPP to personally invite him to the Alzheimer Society Queen’s Park Day. The week after he was scheduled to meet with the Ontario Dementia Advisory group for the first time, but I received a call from his wife Maureen (Mo) advising that Al would be having surgery and wouldn’t be able to participate as anticipated but that he would like to be kept informed of the work underway. On April 27th Al went in for surgery, and sadly he did not recover. He passed away on May 14th.
Al was an impressive and active advocate for people with dementia for many years. He gave of his time so liberally and always gave thanks to his wife Mo, without whom he could not have organized himself as effectively.
Beth says it best – “Al was rarely without a smile or an anecdote. He was hospitable and reflected frequently on life’s little quirks finding all around him something of interest and curiosity.”
He was a wonderful example of someone living well with dementia.
Thank you Al. We miss you already.
Delia Sinclair Frigault – Public Policy and Stakeholder Relations Coordinator
Alzheimer Society of Ontario
Shelley Green – Executive Director
Robyn Fox – Volunteer Companion Coordinator
Beth Haas – Behavioural Support Worker
Alzheimer Society of Oxford
I’m Henry Duncan and I volunteer with the Alzheimer Society of Oxford. I got involved because I was looking to do volunteer work after retirement and since my mother had Alzheimer’s disease I felt the Alzheimer Society would be the best fit for me.
I have been volunteering with the Alzheimer Society for approximately 15 years and although volunteer companion is my main role I also help out with a lot of different tasks. There’s always something that needs doing, whether it’s work on display booths, errands, set up for special events, shopping for office supplies, research presentations, phone calling and prepping newsletters for mailing.
My favourite moment from volunteering was when I took my volunteer companion to Caressant Care Nursing Home, where he joined a 92 year old resident and put on a jam session to entertain residents. He played a harmonica, I played the bag pipes and the resident played a guitar. Everyone had a blast!
Whatever you do as a volunteer is very worthwhile as the Society provides a great and needed service to many people in Oxford County. All volunteer work is greatly appreciated by the Society and clients and all volunteers are valued and treated well by the Society staff. It has been an important part of my life for many years. I have met many interesting people, made many friends and have felt a great deal of satisfaction in helping people and contributing to my community.
We made this video to thank all of our incredible volunteers for their generous donation of time and energy. The work we do at the Society could not be done without the help from loyal and supportive volunteers, and for that, we are grateful.
Enjoy the video, and for more information about volunteering in Toronto, visit us here.
I enjoy volunteering with the Alzheimer Society because I support their cause and want to help in any way I can. I have volunteered with the Alzheimer Society since June 2014, coming in once a week to help with various tasks in the office. Everyone calls me Super Stacy because I work so quickly!
To me, the best thing about volunteering is getting to know new people and working with others. I am also member of L’arche Toronto and volunteer with two law firms in the city.
When I am not working at my volunteer placement I enjoy going to the movies, going out for dinner, shopping and swimming! Recently I spent time with my family in Florida and really enjoyed helping my sisters with my little nephews.
My name is Jaclyn Turpin and I volunteer with the Alzheimer Society of Oxford. I am a student at King’s University College studying Family Studies and Thanatology (bereavement and grief). Volunteering with the Alzheimer Society allows me to put my academic knowledge to practice. Additionally, I love working with people and supporting those who experienced loss.
I am a support services volunteer. The Alzheimer Society did an amazing job ensuring I had a position that met my interests as well as supporting their needs. I help review the current programming and research to its benefits to clients.
I also initiated a new program that is under development, called “Touch Quilts”, where memorable fabrics are crafted together to make a quilt for the client, meeting their comfort needs. My most memorable moment so far has been the opportunity to take part in the Fleece Festival and promote the Touch Quilt. This was such a rewarding experience, knowing that people were so interested in a program that you introduced.
Volunteering has helped me gain experience and knowledge, from both my research and the great people I have met from the agency, volunteers, and community members. I didn’t know how much you can do to help someone with dementia! I have also always wanted to work with people and volunteering for the Alzheimer Society has allowed me to so. But I do some “behind the scenes” work, which I have learned is just as powerful as working directly with an individual.
I would encourage anyone to volunteer for the Alzheimer Society. They look at your goals, expertise, talents, and passion to find you a position. They are also flexible with schedules, which is great for a full time student who also works and does a placement. The Alzheimer Society will be just as appreciative of your time as you will be of your experience!
Volunteer, Alzheimer Society of Oxford County
Leona volunteers by sharing education, support and experience
Leona Nickel first became involved with the Alzheimer Society of Manitoba when her mother started showing signs of dementia. She felt she needed a place to talk about how she was handling this change, and a Support Group was the perfect outlet.
For the past 20 years, Leona has volunteered as a Support Group Facilitator for the Alzheimer Society of Manitoba.
“I love hearing people’s stories and asking questions. I’ve been in their shoes, so I have some knowledge I can share,” says Leona.
With the help of the Alzheimer Society, Leona provides education through videos and other materials. She finds the people who attend the Support Group are eager to talk, listen and share their experiences of dementia. Leona is humble in the help she provides.
“I turn on the lights and set up the chairs. By talking and listening, the people in the group help each other,” she says.
My mother had Alzheimer’s. The Alzheimer Society of Sault Ste. Marie services such as support groups, caregiver meetings and educational tools were a godsend. I wanted to give back to the Society after all it gave to me.
What is my background?
I worked at a newspaper for many years in their advertising department. After retirement, I wanted to find a way to stay active in the community.
What is my impact?
I help the Society in any way that I can. Sometimes I do reception and computer work; other times I`m out in the community helping with important fundraising events such as the Walk for Memories and our annual Coffee Break kickoff event.
Why should you volunteer?
I volunteer with the Alzheimer Society and many other charities because it keeps me active. And staying active helps keep me feeling young. Volunteering gets you out into the public meeting new people. Sitting at home doing nothing all day isn’t good. You need to get out into the community.
Learn more about volunteering and how to volunteer at the Alzheimer Society.