The Canadian Charter of Rights for People with Dementia

What is the Charter?

People living with dementia in Canada are entitled to the same human rights as any other person in Canada, as outlined in the Canadian Charter of Rights and Freedoms. However, stigma and discrimination are huge barriers for people with dementia and often contravene these rights.

That’s why the Alzheimer Society is pleased to support the first-ever Canadian Charter of Rights for People with Dementia. The landmark Charter is the culmination of over a year’s work by the Alzheimer Society of Canada’s Advisory Group of people with dementia, whose members represent different walks of life from across the country.

The Charter defines seven explicit rights to empower you to self-advocate as a person living with dementia in Canada. It also ensures that the people and organizations that support you will know and protect your rights.

Read the Charter

"As a person with dementia, I have the same human rights as every Canadian as outlined in the Canadian Charter of Rights and Freedoms.

The following charter:

• Makes sure people with dementia know their rights,
• Empowers people with dementia to ensure their rights are protected and respected, and
• Makes sure that people and organizations that support people with dementia know these rights.

As a person with dementia, the following rights are especially important to me. I have the right:

1. To be free from discrimination of any kind.
2. To benefit from all of Canada’s civic and legal rights.
3. To participate in developing and implementing policies that affect my life.
4. To access support so that I can live as independently as possible and be as engaged as possible in my community. This helps me:
   • Meet my physical, cognitive, social, and spiritual needs,
   • Get involved in community and civic opportunities, and
   • Access opportunities for lifelong learning.
5. To get the information and support I need to participate as fully as possible in decisions that affect me, including care decisions from the point of diagnosis to palliative and end-of-life care.
6. To expect that professionals involved in my care are:
   • Trained in both dementia and human rights.
   • Held accountable for protecting my human rights including my right to get the support and information I need to make decisions that are right for me.
   • Treating me with respect and dignity.
   • Offering me equal access to appropriate treatment options as I develop health conditions other than my dementia.
7. To access effective complaint and appeal procedures when my rights are not protected or respected.

It will take the effort of every Canadian to protect and respect the rights of people with dementia so that we are seen as valuable and vital community members."

How the Charter came to be

The importance of human rights for people with dementia

People with dementia are individuals with the same human rights as anyone else, including the right to manage their own lives. Over time, however, the disease affects their abilities to make decisions about their everyday lives, such as their finances and health.

This makes it difficult for people with dementia to stand up for themselves when their rights are threatened. People with dementia often face stigma and discrimination based on their diagnosis, and are vulnerable to assumptions, actions and decisions made on their behalf.

However, a human rights-based approach to dementia can help address this problem and give people with dementia a voice.

What is a human rights-based approach to dementia?

A human rights-based approach means that individuals and the communities in which they live acknowledge the rights of the person with dementia, empowering them and improving their quality of life. Through this approach, people with dementia should be able to:

• Receive encouragement and support to participate in the development of dementia-focused policy and practice;
• Know and claim their rights, especially when they feel their rights are being threatened;
• Hold individuals and organizations responsible for respecting, protecting and fulfilling their rights; and
• Feel assured that health, social care and civic services will understand their needs and thus provide the highest possible quality of care.

With this approach in mind, an Advisory Group, made up of Canadians living with dementia, worked with the Alzheimer Society of Canada to create the Canadian Charter of Rights for People with Dementia.

Read the stories behind the Charter

We asked the members of our Advisory Group to share what the Canadian Charter of Rights for People with Dementia means to them. These are their stories.

"When it comes to society’s perception of dementia, as well as respecting and appreciating an individual with dementia’s right and ability to participate fully in all of what life has to offer, we still have ways to go." - Jim Mann, British Columbia

Read Jim's story.

"I don’t hide that I have Alzheimer’s, but it’s my choice when and how to talk about it. Our Charter of Rights is a reminder for me, and those who interact with me, that I am still here, and I am still a person." - Marilyn Taylor, Nova Scotia

Read Marilyn's story.

"By sharing our experiences, we can enrich the lives of others and encourage networks of sensitive and caring people." - Mario Gregorio, British Columbia

Read Mario's story.

"We, as citizens in this great country, have a responsibility to live within and uphold this framework for rights that we hold so dear to our hearts as Canadians." - Roger Marple, Alberta

Read Roger's story.

What can the Charter be used for?

The Charter of Rights is a living, accessible document that protects and asserts your rights as a person living with dementia in Canada.

• The primary purpose of the Charter is to help you understand and advocate for your human rights.
• In addition, the Charter will provide a framework for policy makers, health, social services and other government agencies to identify barriers and drive the changes needed to improve the lived experience of those with dementia and their caregivers. For instance, the Charter can inform Canada’s national dementia strategy, currently in development.
• Furthermore, organizations whose work impacts people with dementia will use the Charter to ensure that people with dementia receive the same high quality services offered to others, enabling them to enjoy the best possible quality of life.
• Finally, the Charter is relevant to all Canadians with dementia, regardless of where they live, the stage of their disease or the services they access. Like the Canadian Charter of Rights and Freedom it is based on, the Canadian Charter of Rights for People with Dementia is inclusive and does not discriminate based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

Why meaningful engagement matters

Meaningful engagement is a person-centred approach that encourages and invites people with dementia to participate with purpose and interest.

Participation includes actively contributing ideas, skills and abilities, while recognizing that individual participation will vary, depending on abilities, personal histories and available opportunities.

People with dementia remind us, “nothing about us without us.” The Canadian Charter of Rights for People with Dementia was created with meaningful engagement through the participation of people like you who live with dementia. Firsthand experience and knowledge of the disease ensure that the Charter is comprehensive and reflective of your needs.

Talk about the Charter

The ability to participate in decisions that affect our lives is a fundamental human right. Alzheimer Societies across Canada are inviting persons with dementia to become involved in the work of the Society.

You've read what the members of our Advisory Group have to say. Now it's your turn: What do you think of the Canadian Charter of Rights for People with Dementia? We want to hear from you.

More useful links and resources

The Canadian Charter of Rights for People with Dementia. Alzheimer Society of Canada, 2018.

Position statement: Meaningful engagement of people with dementia. Alzheimer Society of Canada, 2018. The Alzheimer Society of Canada believes that people with dementia want to inform the work that directly impacts their quality of life and well-being. Read our full statement on meaningful engagement of people with dementia.

Guide to the Canadian Charter of Rights and Freedoms. Government of Canada. This guide gives more detail on the landmark document for human rights in Canada, on which the Canadian Charter of Rights for People with Dementia is based.

A human rights based approach: An introduction. Scottish Human Rights Commission. Read more about what a human rights-based approach is, including the importance of the PANEL principles (Participation, Accountability, Non-Discrimination and Equality, Empowerment and Legality).