The history of the Alzheimer Society

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Since its founding in 1978, the Alzheimer Society has grown and expanded to serve Canadians from coast to coast. Learn more about that evolution here and read some of the highlights of the Society's work since its early years.

Société Alzheimer Society

After learning about our history, we recommend taking a look about the impact that the Alzheimer Society is making today.

The 1970s

1977

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.

1978

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.

1979

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.

The 1980s

1980

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,
  • Represent people with Alzheimer's disease and other concerned individuals and groups before all levels of government,
  • Promote public and professional awareness of the disease and the fact that help is available and
  • Support and encourage research into Alzheimer's disease and related conditions.

1982

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.

1983

Radio and television commercials are created for Alzheimer Awareness Week with Jean Béliveau of the Montreal Canadiens as the celebrity spokesperson. An awareness brochure, information sheet and quiz are also distributed across Canada.

1984

The Alzheimer Society of Canada joins the Alzheimer's Disease and Related Disorders Association in the United States of America (known now as the Alzheimer's Association) and representatives from seven other countries to form Alzheimer's Disease International (ADI).

1985

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.

1986

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 and
  • Chapters and support groups to offer direct services to people with Alzheimer's disease and their families.

1987

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 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.

1988

The Board ratifies affiliation agreements with the British Columbia, Saskatchewan, Manitoba and Alberta provincial associations.

1989

The Society holds its first annual Research Grants and Awards Competition, which will later be called the Alzheimer Society Research Program, with three categories of research awards:

  1. Research Grants,
  2. Career Scientist Awards and
  3. Training Awards (Doctoral and Post-Doctoral Awards).

It establishes a peer review process with separate research review panels for biomedical research and caregiving research.

The 1990s

1990

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.

1991

The Society enters into an affiliation agreement with the Newfoundland and Labrador provincial association.

15,000 copies of Alzheimer Disease: A Handbook for Care are shipped across the country in the first six months of distribution.

1992

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.

1993

The Alzheimer Society goes nationwide, with the signing of formal affiliation agreements with the Quebec and Ontario provincial associations.

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.

1994

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.

The Society publishes Just for You, its first publication specifically for people with Alzheimer's disease.

1995

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.

1996

The Society allocates more than $1 million in research funding for the first time.

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.

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.

1997

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.

1998

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.

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.

1999

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 2000s

2000

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.

2001

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.

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.

2002

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.

2003

The Alzheimer Society's national Board of Directors welcomes the first person living with dementia to the Board to provide a key perspective and help direct the Society's work.

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.

2004

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.

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.

2005

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 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.

2006

The Alzheimer Society recognizes the 100th anniversary of the identification of Alzheimer's disease. Dr. Alois Alzheimer identified the disease in 1906.

2007

The Alzheimer Society celebrates its 30th anniversary.

2008

The national and provincial Alzheimer Societies sign a Federation Agreement in November to work together for a common goal, share resources and information and help one another.

The Alzheimer Societies of Canada, Ontario, and Toronto co-locate into an office in Toronto to promote better collaboration.

The Alzheimer Society of Canada signs the Global Alzheimer’s Disease Charter put forth by Alzheimer’s Disease International. Launching on World Alzheimer’s Day – September 21, 2008 – the petition demonstrate the urgent need for governments and stakeholders around the world to make Alzheimer’s disease a priority.

The Alzheimer Society of Canada is a founding member of Neurological Health Charities Canada (NHCC), a collection of organizations that represent people with neurological and neuromuscular problems. The NHCC provides leadership, opportunities for collaboration, education and research related to brain health.

2009

April 1 marks the first year of action of the Federation Agreement between the national and provincial Alzheimer Societies across Canada.

The Society launches its Progression series pamphlets, detailing the individual stages of Alzheimer’s disease. This marks the first time printed material is written from a person-centred perspective.

The 2010s

2010

The Alzheimer Society of Alberta and Northwest Territories opens its first office in the Northwest Territories.

The Society publishes Rising Tide: The impact of dementia on Canadian society. The report summarizes the current and projected economic and social costs of dementia in Canada and makes recommendations on policies and strategies.

The Culture Change Initiative is launched to promote better long-term care for persons with dementia and to encourage person-centred language use.

The Alzheimer Society Research Program awards $2.9 million in research grants to deserving projects.

2011

The Alzheimer’s Disease International conference is hosted in Toronto and includes speakers from the Alzheimer Society of Canada and the development and launch of the Power of Music video.

The federal government invests $8.6 million for new research on Alzheimer’s disease, supporting 44 research projects approved by the Canadian Institutes of Health Research (CIHR) to be carried out by Canadian researchers.

2012

The Federation web portal launches. At its completion, the portal will host the websites of all Alzheimer Societies, promoting a common brand, shared information, and easier access.

The World Health Organization releases its report, Dementia: A Public Health Priority, signalling the need for governments around the world to take action to alleviate the economic and social stress of dementia.

The Alzheimer Society awards $3.4 million in research grants and awards to 35 deserving projects.

2013

The Alzheimer Society launches a new campaign for Alzheimer's Awareness Month: "See me, not my disease. Let's talk about dementia."

The Canadian MedicAlert Foundation and the Alzheimer Society of Canada come together to launch the MedicAlert® Safely Home® program.

On the eve of World Alzheimer's Day, the Alzheimer Society calls on the Federal Government to immediately establish a "Canadian Alzheimer's disease and dementia partnership" to lead and facilitate the development and implementation of a national dementia strategy. The Society cites a recent survey that revealed 83% of Canadians want a national dementia strategy.

The Society welcomes the commitment of G8 countries to work together to address the rising dementia crisis.

The Alzheimer Society Research Program funds its highest total yet, $4.5 million for 38 new research projects from across the country aimed at improving the prevention, diagnosis and treatment, as well as finding a cure for Alzheimer’s disease and other dementias.

2014

In response to a survey that revealed that as many as 50% of Canadians living with dementia are not getting diagnosis early enough, the Alzheimer Society launches a new campaign, Early diagnosis keeps your life from unravelling, to promote the benefits of early diagnosis.

The Alzheimer Society continues to push the Federal Government for funding for a national dementia strategy. In October, Health Minister Rona Ambrose announces that the federal government and its provincial and territorial counterparts have agreed to create a national dementia plan.

The Society releases PC P.E.A.R.L.S.®: 7 key elements of person-centred care, to help promote person-centred care for people living with dementia in long-term care homes across Canada.

These downloadable information sheets represent seven key elements that, when put into practice, help homes shift away from an institutional approach to a home-like model where staff, management, families and residents work together as a mutually supportive team.

The Alzheimer Society Research Program announces funding for 29 projects for a total of $3.3 million.

2015

For Alzheimer's Awareness Month in January, the Alzheimer Society highlights women affected by dementia with “The 72%” campaign, in reference to the fact that women represent 72% of Canadians living with Alzheimer’s disease.

In March, the Alzheimer Society takes part in the first WHO Ministerial Conference on Global Action against Dementia in Geneva. Health ministers, researchers, policy makers and people living with dementia from around the world meet to find collective ways of moving towards better prevention, care and treatment and reducing its mounting economic and social toll, which is affecting over 44 million lives worldwide.

On National Family Caregiver Day, the Alzheimer Society joins the Canadian Caregiver Coalition to recognize the vital contributions of working caregivers, who represent 6.1 million Canadians juggling personal commitments, care duties and work responsibilities.

The Government of Canada reaffirms commitment to develop a national dementia plan in its 2015 budget.

Alzheimer Societies across Canada come together for the nationwide Walk for Alzheimer's, giving Canadians an active and social way to support people touched by dementia and raise funds for their local Alzheimer Society for essential programs and services.

The Government of Canada and the Alzheimer Society launches Dementia Friends Canada, helping Canadians understand what it means to live with dementia and how better to support those affected within the community. This initiative receives the support of public figures Caroline Cameron, Sam Roberts and David Hearn.

PGA TOUR star David Hearn announces the launch of the David Hearn Foundation in support of the Alzheimer Society. The Foundation will fundraise for projects that that expand programs and service delivery across Canada, while also continuing to support the local Alzheimer Society of Brant Haldimand Norfolk Hamilton Halton through the annual David Hearn Charity Golf Classic.

During World Alzheimer's Month in September, the Alzheimer Society asks Canadians to support the Do something amazing for Alzheimer’s campaign that in turn will support home-grown dementia researchers.

The Alzheimer Society Research Program awarded $3.9 million in grants and awards to Canadian researchers devoted to improving the understanding, prevention, diagnosis and treatment of dementia, bringing the total investment to over $47 million since the Program launched in 1989.

2016

With the #StillHere campaign for Alzheimer's Awareness Month, the Alzheimer Society looks to change negative attitudes about dementia. The campaign is in response to a recent survey that revealed half of Canadians didn't believe that people with dementia could live well.

The Alzheimer Society welcomes the presenting of Bill C-233, An Act respecting a national strategy for Alzheimer’s disease and other dementias, in the House of Commons by Rob Nicholson, Conservative MP for Niagara Falls, and seconded by Rob Oliphant, Liberal MP for Don Valley West.

The Senate of Canada summarizes expert testimony and community consultations in its report Dementia in Canada: A National Strategy for Dementia-friendly Communities. The report provides a list of 29 recommendations for improving dementia care and support in Canada – including the introduction of a national dementia strategy.

The Alzheimer Society of Canada releases its report on the Prevalence and Monetary Costs of Dementia in Canada. The report provides an overview of how many Canadians are affected by dementia, and the monetary impact of the disease in Canada.

To mark National Senior Safety Week, the MedicAlert Foundation Canada and the Alzheimer Society of Canada launch the Good Samaritan Award to foster greater community support for people living with dementia. The award is designed to recognize members of the community who are willing to go out of their way to assist people with dementia, who may have become lost or gone missing, so that they can return home safely.

The first recipient of this award is an individual from Vancouver, B.C. who, after spotting a 60-year-old man running erratically in her neighbourhood, did not hesitate to help.

The Alzheimer Society of Canada forms the first Advisory Group made of people living with dementia. This Group will offer input on initiatives and projects put forward by the Alzheimer Society from the perspective of people with lived experience of the disease.

The Posluns Family Foundation celebrates International Women’s Day by announcing a partnership with CIHR, the Ontario Brain Institute (OBI), and the Alzheimer Society of Canada. This partnership will fund the first research initiative of its kind in Canada under the title of the Wilfred and Joyce Posluns Chair in Women’s Brain Health and Aging.

The Alzheimer Society Research Program announces funding for 34 projects for a total of $3.4 million.

2017

In this year's Alzheimer's Awareness campaign, the Alzheimer Society asks Canadians to be #InItForAlz and support vital research to eliminate this disease and its impact on Canadians.

Through this campaign, the Alzheimer Society also hopes to change the conversation about a disease that continues to be shrouded in silence. This campaign has a public face via TSN hockey analyst Darren Dreger, whose 76-year-old step father has been recently diagnosed with dementia.

Thanks to advocacy efforts from stakeholders across the country, Bill C-233, the National Strategy for Alzheimer’s Disease and Other Dementias Act is signed into law. With this bill passed, Canada could begin developing a national dementia strategy.

The Alzheimer Society joins Carers Canada and its partners to applaud Prime Minister Justin Trudeau for recognizing the 8.1 million carers in Canada in celebration of National Carers Day.

A recent Alzheimer Society-funded study by the Canadian Dementia Priority Setting Partnership identifies 10 priority areas for Canadian dementia research. The results from this study will help inform the direction and focus of the Alzheimer Society Research Program.

The Alzheimer Society Research Program announces it is awarding $3.4 million to Canadian researchers through 2017's research competition. The 24 recipients will help create a brighter future for Canadians who are impacted by or at risk of Alzheimer’s disease and other forms of dementia.

2018

The Alzheimer Society launches a new, person-focused campaign for Alzheimer's Awareness Month: "Yes. I live with dementia. Let me help you understand." This campaign comes in response to a 2017 survey that revealed that almost 50% of Canadians would not want others to know if they had dementia.

Astronaut Steve MacLean becomes the Ambassador of the Federation of Quebec Alzheimer Societies. Says Maclean, "People living with Alzheimer’s disease are human beings who need human contact, compassion and friendship, and it is up to all of us to take responsibility for supporting them, with dignity and respect."

The Society welcomes Investors Group (later renamed to IG Wealth Management) as its first-ever national title sponsor for the Walk for Alzheimer's. The Walk brings in $5.1 million thanks to 24,977 walkers and 3,728 volunteers across Canada.

In May, the Government of Canada hosts the National Dementia Conference in Ottawa, collecting thoughts and opinions about the potential strategy from a group of participants that included people with dementia, caregivers, researchers, health professionals, advocacy groups as well as representatives from provincial and territorial governments.

During this conference, Minister of Health Ginette Petitpas Taylor announces the formation of a Ministerial Advisory Board on Dementia, which will advise on dementia care and the development of the national dementia strategy. The CEO of the Alzheimer Society of Canada, Pauline Tardif, is named co-chair.

The Alzheimer Society launches the first-ever Canadian Charter of Rights for People with Dementia. The landmark Charter is written by and for people living with dementia, empowering them in situations where they experience stigma, are treated unfairly, discriminated against or are denied access to appropriate care. The Charter is the culmination of over a year’s work by the Society’s Advisory Group of people with dementia.

Through its ordering system, the Alzheimer Society now contains over 800 materials available for local Alzheimer Societies to distribute, from brochures to information sheets to even t-shirts and socks. The Society distributes over 1.5 million pieces of collateral every year.

The Alzheimer Society Research Program awards $2.9 million to 29 Canadian researchers through its annual competition that advances critical and needed research.

2019

Canadians living with dementia continue to lead Alzheimer's Awareness Month through the campaign: “Yes. I live with dementia. Let me help you understand.” This year, a new group of national ambassadors come aboard to tell their stories of living with dementia, and what Canadians can do to be more aware.

The 2019 federal budget invests $50 million over five years to support implementation of the national dementia strategy. This funding comes on top of the $20 million for community-based dementia projects announced in the 2018 budget. As well, the Minister of Seniors is established with a mandate to work with the Minister of Health on dementia-related issues.

Almost two years after it was first announced, Canada’s first-ever national dementia strategy launches: A Dementia Strategy for Canada: Together We Aspire.

The 2019 IG Wealth Management Walk for Alzheimer's takes place in more than 400 communities across Canada, raising over $6.2 million for dementia-focused programs and services that help people living with dementia, their caregivers and families.

The Walk also saw a record number of participants: 32,807 walkers and 4,122 volunteers.

In Quebec, the Federation of Quebec Alzheimer Societies and the 20 Alzheimer Societies in Quebec partner up with Uniprix in support of World Alzheimer's Month. Through the United for Memory campaign, Quebecers can visit their local Uniprix store and meet consultants from their local Alzheimer Society, getting helpful tips and information about neurodegenerative diseases like Alzheimer's disease.

During the federal election in the fall, Canadians send almost 4000 letters to candidates for Members of Parliament (MPs), asking them to commit to a fully-funded strategy.

Through the Alzheimer Society Research Program, the Alzheimer Society of Canada awards $2.1 million to 20 Canadian dementia researchers and launches a new, open competition with two new funding opportunities:

  • Proof of concept grant: Established and new investigators who are leading high-risk, novel projects can apply for $100,000 for up to five years.
  • New investigator operating grant: Investigators who are within the first four years of their faculty position are eligible for $200,000 for up to four years to carry their work throughout the full research cycle.

 

The 2020s

2020

The Alzheimer Society continues on the third year of its successful Alzheimer's Awareness campaign, "I live with dementia." Nine more national ambassadors from across Canada join the campaign to tell their stories about living with dementia and fighting stigma.

The Alzheimer Society releases a new website to better reflect and serve the needs and interests of its many audiences, from people living with dementia, to caregivers, to healthcare providers, to researchers and more.