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Understanding people living with dementia

"Know that when we signed on to be partners, we signed on to support each other. My role does not change just because of a diagnosis. We have cared for each other for years and plan to continue to do this."

—Robin, whose husband, Keith, was diagnosed with young onset dementia at age 57 (read their stories at ilivewithdementia.ca).

"Yes. I live with dementia. Let me help you understand."

Canadians with dementia led year two of our anti-stigma campaign in 2019 by sharing their personal stories of living with the disease. Thousands of Canadians visited the website ilivewithdementia.ca to be inspired by their day-to-day achievements, learn about the struggles as well as the triumphs of fellow Canadians and broaden their understanding about Alzheimer's disease and other dementias.

56%

of Canadians are concerned about being affected by Alzheimer's disease.

First-ever Canadian Charter of Rights for People with Dementia

As difficult as it is to receive a diagnosis of dementia, people with dementia tell us that it can be even more devastating to experience the stigma of this disease on a daily basis. To protect their human rights and give themselves a voice, the Alzheimer Society of Canada's Advisory Group of People with Dementia created the first-ever Canadian Charter of Rights for People with Dementia in 2018.

The Charter empowers people with dementia to understand and advocate for their rights. It is also meant to help policy makers, health-care professionals and organizations pause and reflect on how they currently interact with people with dementia and consider how they can ensure the rights of people with dementia whom they support.

Help share and spread the word: alzheimer.ca/Charter.

"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, one of nine members of the Alzheimer Society of Canada's Advisory Group that created the Canadian Charter of Rights for People with Dementia, mother, stepmother, grandmother, greatgrandmother, retiree, animal lover and daily walker.

Canadian Charter of Rights for people with Dementia

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; and
    • 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.