What is the Canadian Charter of Rights for People with Dementia?
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What is the Canadian Charter of Rights for People with Dementia?

October 23, 2019

Recently, the Alzheimer Society of Canada launched the first ever Canadian Charter of Rights for People with Dementia. The creation of the Charter was driven by Canadians living with dementia. We spoke to those Canadians to hear why each right is important. Gord: As a person with dementia, the following rights are especially important to me. Mario: I have the right to be free from discrimination of any kind. Bill: It’s been my view that the stigma that goes along with this disease is the biggest problem. There’s an immediate feeling that you no
longer have the competence required to carry on a day-to-day basis. Dale: So I think it’s important that whenever you speak to somebody or whenever you talk to someone, you try to get an impression of what level they’re at, and then talk to them in that. Roger: It all boils down to understanding. And if people would show a little compassion, kindness, try to walk a mile in their shoes for whoever it is with dementia, I think that would do the trick. Bill: To benefit from all of Canada’s civic
and legal rights. Jim: This right overrides the stereotype of
a person with dementia, because when you consider the stigma or stereotype–that is, actually,
a diminishment of rights–but this says quite clearly that a person with dementia does have the right. Marilyn: To participate in developing and
implementing policies that affect my life. Gord: Too many times, policies and procedures are developed without any input from the people who will be using them. This happens in life and in the workplace. I feel that it’s great to have some input, as this is for the people with dementia and other disabilities. Roger: There could be many things overlooked, not getting that perception and understanding the nuances that someone with dementia could offer. Mario: One of the hardest decisions that I want to be able to participate in is my final exit. There is a great challenge in having to make decisions many years before they are implemented. I’m one of the persons living with dementia who insists on this option. Jim: To access support so that I can live
as independently as possible and be as engaged as possible in my community. Roger: This helps me meet my physical, cognitive, social and spiritual needs, Marilyn: Get involved in community and civic opportunities. Mario: And access opportunities for lifelong learning. Bill: The more you can become involved, the more you can be seen out in the community, the more active you can be, socially, physically, et cetera. That helps to eliminate the stigma that goes along with this disease. Jim: The perception of a person with dementia is that you are diagnosed and you go right to long-term care. The ability that this Charter provides people with dementia is the affirmation that you are able to access services, to live in the
community, to live well in the community, because as they say, “you’re better at
home.” And putting it in writing with the Charter
reinforces that. Bill: When you’re diagnosed, don’t sit in a corner. Try and get out and be as active as you can and let people know you’re still competent. Dale: 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 Mario: Getting accessible information and
support is important. After I was diagnosed I needed to find out
how I could prevent my cognitive decline. But it was a challenge to find information about what to do. Dale: But the minute you’re diagnosed doesn’t necessarily — that’s the minute that you’re unable to make any decisions or anything for yourself. Marilyn: I want to be told. I want to have the privilege of knowing what my diagnosis is for starters, and I want to have the privilege of choosing what my life’s going to be. Not what someone has predestined me for, or what anybody else has an idea that Alzheimer’s is. Gord: To expect that professionals involved in my care are: Bill: Trained in both dementia and human rights. Jim: 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. Marilyn: Treating me with respect and dignity. Dale: Offering me equal access to appropriate treatment options as I develop health conditions other than my dementia. Marilyn: I’ve had some bad experiences with some of the professionals that I’ve met. Dale: Sometimes they almost treat you as a child, because a lot of the stigma around Alzheimer’s is that you’ve, they say that
you’ve, gone back to a childhood outlook on things or maybe a childhood mentality. And when you are treated like that, sometimes it’s a little bit demoralizing, and they’re trying to explain, over-explain things to
you. Roger: To access effective complaint and appeal procedures when my rights are not protected or respected. Marilyn: All of the rights are very valid,
but they’re pretty much useless unless there’s some way of making sure that they can be supported, Mario: Not everyone has such a positive experience getting the support they need. Marilyn: And number seven, which is “to
access effective complaint and appeal procedures when my rights aren’t protected,” — it gives
credence to what the rights are. Gord: We, the people with dementia and other related diseases, feel that it is important to be able to participate in our well-being for our future and in our journey with this disease. Marilyn: 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. Roger: There’s a thousand faces to dementia. We in society need to recognize all those
faces, from the beginning to the very end. And if people do that, a lot of perceptions,
a lot of problems that we have in this day and age towards people with dementia…a lot of those problems will just go away.

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