History of the Alzheimer Society of Canada
Since its founding in 1978, the Alzheimer Society has grown and expanded to serve Canadians from coast to coast. The Alzheimer Society of PEI is a part of the Federation of Alzheimer Societies across Canada. The Alzheimer Society of PEI came into being on April 25, 1989. You can learn more about that evolution of the Alzheimer Society of Canada here and read some of the highlights of the Society's work since its early years.
Alzheimer Society Milestones
The Alzheimer Society is established when researchers at the University of Toronto and Surrey Place Centre who are investigating Alzheimer's disease become deeply concerned about the lack of support available to families affected by the disease. A Steering Group, composed of researchers, family members, professional staff and a resource person, is formed.
It becomes clear to the Steering Group that some form of an organization is needed and it identifies three major goals: family support, education and research. The Steering Group expands and becomes an Interim Board of Directors. The organization is incorporated federally under the name Société Alzheimer Society, the first organization of its kind in the world. Forty-five people attend the founding meeting of the Alzheimer Society. A bank account for the Alzheimer Society is opened with an initial deposit of $100.
The Society receives charitable status as a non-profit organization. Working committees are established in each of the three identified areas of focus. Local chapters are formed in Toronto, Hamilton, London and Guelph, Ontario and regional representatives are identified in every province.
In addition to three standing committees (Education, Research and Family Support), the Board activates a Finance/Fundraising Committee to generate funds for Society programs.
In these early years, the Alzheimer Society (known to many as the Alzheimer Movement) works:
to provide support to people with Alzheimer's disease and related conditions, their relatives and/or care providers to represent people with Alzheimer's disease and other concerned individuals and groups before all levels of government to promote public and professional awareness of the disease and the fact that help is available to support and encourage research into Alzheimer's disease and related conditions.
The Alzheimer Society of Canada joins the Alzheimer's Disease and Related Disorders Association in the U.S. (known now as the Alzheimer's Association) and representatives from seven other countries to form Alzheimer's Disease International.
The Society creates a Research Policy Committee to advise the Board and give policy direction in research and a Research Review Panel of academic researchers to review submissions for research grants.
The Society's Executive Director, Vince Gillis, begins a two-year term as Acting Secretary-General of Alzheimer's Disease International.
The general membership approves the establishment of a three-tier system with:
- a national office (known as the Alzheimer Society of Canada) to co-ordinate Canadian and international activities
- provincial organizations to liaise with local chapters and support groups
- chapters and support groups to offer direct services to people with Alzheimer's disease and their families
The Society enters into an affiliation agreement with the Nova Scotia provincial association.
The Society adopts a new Mission Statement:
"To alleviate the personal and social consequences of Alzheimer's disease and to promote the search for a cause and cure."
The Board ratifies affiliation agreements with the British Columbia, Saskatchewan, Manitoba and Alberta provincial associations.
The Alzheimer Society convenes a strategic planning session to develop Vision Statements for the future, identify priorities for action and build a framework to allocate resources of the national Society. The Society enters into affiliation agreements with the New Brunswick and Prince Edward Island provincial associations.
The Society enters into an affiliation agreement with the Newfoundland provincial association.
The Alzheimer Society goes nationwide, with the signing of formal affiliation agreements with the Quebec and Ontario provincial associations.
The Society develops a Unified Research Program to fund Alzheimer research across the country. The Board expands and approves vision statements for the future direction of the Society.
All provincial Alzheimer organizations now begin using the name Alzheimer Society and all accept a set of society-wide graphics standards to create "one look" for the organization nationwide. A Unity Task Force is struck to address issues of roles and responsibilities at the various levels of the organization and to develop a sound financial framework for raising and distributing revenues.
A Memorandum of Understanding (MOU), developed over the previous three years, is signed by the Alzheimer Society of Canada and its partner members (provincial Alzheimer Societies). The MOU establishes a common understanding and direction for future activities of the Society. This document marks an important milestone in the growth of the organization. A Planning Assembly builds on the momentum of the signing of the MOU to agree on strategic priorities and launch the Society's Strategic Planning Process.
A person with dementia joins the Alzheimer Society's national Board of Directors to provide a key perspective and help direct the Society's work.
The Alzheimer Society of Canada and the National Advisory Council on Aging join forces in calling for a National Strategy on Alzheimer's Disease and Related Dementias. While provincial Alzheimer strategies currently exist, a co-ordinated and comprehensive approach is required at the national level involving government, agencies and people affected by Alzheimer's disease or a related dementia. The two organizations continue to work towards making the National Strategy a reality.
People with early stage Alzheimer's disease and dementia are contributing on Provincial and Chapter boards and in other volunteer capacities across the country.
The Alzheimer Society recognizes the 100th anniversary of the identification of Alzheimer's disease. Dr. Alois Alzheimer identified the disease in 1906.
Highlights of Our Work
The Society publishes and distributes more than 12,000 copies of its new 50-page Family Information Handbook on Alzheimer's disease and caregiving.
The Society holds its first Canada-wide Alzheimer Awareness Week in November to raise public awareness of Alzheimer's disease.
Radio and television commercials are created for Alzheimer Awareness Week with Jean Béliveau of the Montreal Canadiens as celebrity spokesperson. An awareness brochure, information sheet and quiz are also distributed across Canada.
The annual Alzheimer Awareness campaign shifts from November to January, providing an opportunity to significantly expand the campaign by garnering thousands of dollars worth of free air time on radio and television. Magazine and transit shelter ads are used for the first time.
Jim Burns, "the boy from Cape Breton," raises $41,000 for Alzheimer's disease research during his run across Canada.
The Society holds its first annual Research Grants and Awards Competition, with three categories of research awards: Research Grants, Career Scientist Awards and Training Awards (Doctoral and Post-Doctoral Awards). It establishes a peer review process with separate research review panels for biomedical research and caregiving research.
15,000 copies of Alzheimer Disease : A Handbook for Care are shipped across the country in the first six months of distribution.
The Society publishes the Guidelines for Care, a set of nationwide standards and guidelines for Alzheimer caregiving. Copies are requested from as far afield as China, France, Italy, South Africa, Australia and the United States.
Maurice Dionne, member of Parliament for Miramichi, New Brunswick, holds a press conference to announce that he has Alzheimer's disease and will not seek re-election. This public announcement creates a flood of mail and calls to all levels of the Alzheimer Society and helps diminish stereotypes about Alzheimer's disease.
The Society produces Alzheimer Disease : Care at Home, a set of seven videos, workbook and instructor's manual, as a training resource for Alzheimer home support workers.
The Society hosts the 9th Alzheimer's Disease International conference in Toronto.
The first support group for people with Alzheimer's disease is formed.
The Society publishes Just for You, its first publication specifically for people with Alzheimer's disease.
The Alzheimer Society and the RCMP join forces to create the Alzheimer Wandering Registry (changed in 2003 to Safely Home™ -- Alzheimer Wandering Registry) to help people with Alzheimer's disease who are lost return home safely.
Brothers Greg, Ross and Keith Neil cycle across Canada, "Riding for Hope," to raise awareness of Alzheimer's disease and honour their mother, Barbara, who has the disease.
Society representatives meet with federal policy makers in Ottawa to discuss critical Alzheimer issues at the first Public Policy Forum.
On September 20, 1996, the first nationwide Alzheimer Society fundraiser, Alzheimer Coffee Break™, is held coast to coast with 7,500 coffee breaks raising more than $275,000.
The Society allocates more than $1 million in research funding for the first time.
The Society issues a set of Ethical Guidelines, the first document of its kind in Canada to address the ethics of Alzheimer care.
The Society launches its website, www.alzheimer.ca, a bilingual source of information on Alzheimer's disease, care and the work of the Society.
The Alzheimer Society issues, for the first time, a list of 10 warning signs of Alzheimer's disease and publishes two related booklets: Is It Alzheimer Disease ? 10 Warning Signs and Getting A Diagnosis: Finding Out If It Is Alzheimer Disease.
Caregiver stress is the focus of this year's Alzheimer Awareness Campaign. New brochures help caregivers recognize the signs of stress and offers ways to deal with it.
The impending crisis of Alzheimer's disease on 10 million aging baby boomers marks the Alzheimer Awareness Campaign for the new millennium.
The Alzheimer Society of Canada co-hosts World Alzheimer Congress 2000 in Washington, D.C. with Alzheimer's Disease International and the Alzheimer's Association of the U.S.
Thanks to earlier diagnosis and the introduction of medications to treat symptoms of Alzheimer's disease in the early stages, the Alzheimer Society begins, for the first time, to create educational material for people with Alzheimer's disease. This marks a departure from previous education efforts directed primarily at caregivers and families.
The Society develops a new section of its website, I Have Alzheimer's Disease, for people with the disease.
Towards the end of the year, focus groups of people with Alzheimer's disease and related dementias are held across Canada to help the Society develop additional material that meets this group's needs.
The Society allocates more than $2 million in research funding for the first time.
With input from people with dementia through the focus groups held in 2001, the Alzheimer Society of Canada develops a new booklet and audiotape, Shared Experiences: Suggestions for those with Alzheimer's disease. The I Have Alzheimer's Disease section of the website expands with this new information.
This year, the Society responded to over 900,000 requests from the public for information on Alzheimer's disease.
The programs and services of the Alzheimer Society across the country are the focus of this year's Alzheimer Awareness Campaign. The aim is to encourage people to contact their local Society for help.
Coffee Break, the Society's annual fundraiser, raises over $1 million nationwide to help provide programs and services to people affected by Alzheimer's disease.
The Society is a leading funder of Alzheimer research in Canada and offered $3.4 million in grants and awards this year.
This year there are more than 85 Early Stage Alzheimer Support Groups across Canada offering information and peer support to people with the disease. These groups are lifelines for those with the disease.
The national website, now in its eighth year, receives almost 1 million page requests for the final quarter of 2004. An expanded Message Board is added to the site. Its online discussion forums offer another way for family caregivers, people with the disease and health-care professionals to support and learn from each other.
The Society produced 1 million informational pieces (guidelines, information sheets, pamphlets, etc.) to educate the public on Alzheimer's disease.
The Society launches a two-year Awareness Campaign entitled "The Story is Changing." The campaign focuses on progress in caring, treatments, research and understanding of Alzheimer's disease.
Safely Home™ -- Alzheimer Wandering Registry celebrates 10 years in the community. New resources are added to the program including a training DVD for police and search & rescue personnel, and a pre-plan resource for long-term care facilities to assist them in the event a resident gets lost.
2007 marked our 30th Anniversary!
More than thirty years ago, the Alzheimer Society had its beginnings as a Steering Group of researchers concerned about the lack of support for people with Alzheimer's disease. Their focus on family support, education and research laid the foundation for an Alzheimer movement that has grown into a nationwide Society that helps hundreds of thousands of Canadians touched by dementia every year.
"Over the past three decades, the society has experienced tremendous growth," says Scott Dudgeon, CEO of the Alzheimer Society of Canada. "We continue to be the only nation wide group working in communities across the nation to improve the lives of people living with Alzheimer's or related diseases and their caregivers."
During its first decade, the society faced the enormous challenge of convincing people that dementia was an actual disease, and not just a normal part of aging. The society organized programs and services to dispel myths, and help caregivers and families learn more about the disease. Working toward even greater awareness, increased understanding and support for the disease, the society joined with the American Alzheimer's Association, as well as organizations in seven other countries, to be a founding member of Alzheimer's Disease International.
In the second decade, the Alzheimer Society Research Program was launched, offering young and upcoming researchers as well as established ones an opportunity to receive grants to further their work in hopes of finding a cure. Over 20 years, the program has awarded approximately $30 million to Alzheimer research. Canada has some of the top researchers in the world working in biomedical research into the causes and a cure for the disease. Canadian researchers are also working to improve quality of life, including caregiving, family support and long-term care.
Further advancements were made during our third decade as the public showed more and more understanding of the disease. Treatments became available to help alleviate symptoms, allowing people with the disease to become active members of their local societies. This trend has continued as more and more people with the disease became spokespeople and volunteers. The Society has appointed a person with dementia to its board of directors since 2003.
Looking ahead, we will be releasing new figures on the prevalence and economic impact of Alzheimer's and related diseases in Canada in January 2009 during our Alzheimer awareness month. These new figures will help strengthen the foundation for our advocacy campaign as we continue to engage the government like never before. We are on the brink of major change in policy, research, improvements to care, diagnosis, treatment and prevention and possibly finding a cure. Some of these new advances in research were presented at the International Conference on Alzheimer's Disease which took place in July 2008.
As we move forward, we continue to strive for excellence in our programs and services, research, education and awareness.
Last Updated: 01/20/16