Canadian charter of rights for people with dementia

Background

In 2016, #StillHere served as the theme of The Alzheimer Society of Canada’s annual nation-wide Alzheimer's Awareness Month campaign. Through a series of compelling personal narratives, the campaign showed that people with dementia can and do live well after diagnosis.

Later that same year, the Advisory Group developed the ‘Meaningful Engagement of People with Dementia: A Resource Guide’ that included an ‘Ethical Framework for the Meaningful Engagement of Persons with Dementia in the work of the Alzheimer Society’ (see https://alzheimer.ca). On reflection, these pieces, at least for me, proved to jumpstart a greater awareness and understanding of human rights and our own rights as people living with dementia. It is easy to believe that every citizen has rights. The United Nations has issued a Universal Declaration of Human Rights and Canada has a Charter of Rights and Freedoms for that very reason, to establish the rights and responsibilities to and of every citizen. From these documents and others like them in different countries, the assumption can be made, and often is, that every group of people is given those rights automatically; in reality, though, not every group is afforded these rights.

The Advisory Group saw a definite need to be clear and concise that what seemed like a societal acceptance of routine dismissive attitudes and actions towards people with dementia would need to be challenged. There had to be a societal shift in attitudes and thinking to end personal experiences like this one from a gentleman living with dementia:

I keep going back to the golf because that’s what I do. And I belong to the club and I used to run the club and I was club captain, and I used to run Men’s Night for years and years. I knew all the rules. Now they don’t ask me about a rule. They don’t ask me about money or something. I can’t collect money because I can’t put ‘paid’ next to the guy’s name or something. So it’s funny in one sense, and it’s kind of disappointing in another … It’s so obvious [that people are assuming incapability] and sometimes I laugh about it. And other times…

The Advisory Group also acknowledged that ‘[u]nfortunately, sometimes health-care professionals and family members do not always respect the rights of people living with dementia. Sometimes others assume that people living with dementia are not able to understand information or make their own decisions’. (See Conversations about Care: The Law and Practice of Health Care Consent for People living with Dementia in British Columbia, Summary Report 2019 – see https://www.bcli.org/wordpress/wp-content/uploads/2019/02/HCC_summary-Report_web_v2.pdf)

We all had our own stories of dealing with stigma and decision-making disputes and now, somehow, we had to chart our course to change the narrative for the long-term (O’Connor, Mann, & Wiersma, 2017). We would not be satisfied if this were to have temporary impact, like being the ‘flavour-of-the-month’. What we developed had to be compelling, tangible and in a language that would be clear to business, health services and medical communities and, quite frankly, the public at large.

Not ones to shy away from a challenge, the Advisory Group members felt it was incumbent on them to define and formalise the rights and expectations of people with dementia. So, we set out to develop an approach to make clear that people living with dementia do indeed have rights – and these need to be enshrined in public policies, organisational practices and be operationalised.

The deliberations of the Advisory Group set the stage for that all-important first step.

First step

Our group recognised that others had done a lot of the heavy lifting on which we could refer and reflect. Through our discussions, however, we had our own priorities, which would guide us in the Charter’s development. Clearly, stigma and related issues would be a foundation. Our Advisory Group benefits from a pan-Canadian membership with a diverse collection of urban and rural members. This brought varied perspectives to our many conference calls and, I think, made our Charter resonate and applicable across Canada, from coast to coast.

Canadian Charter of Rights for People with Dementia

Point 1: To be free from discrimination of any kind.

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, on a day-to-day basis. (Advisory Group member 2018)

Our Group recognised the growing international recognition and action towards the need for and benefit of a human rights approach for persons with dementia. We also recognised the difference between basic acknowledgement and an ‘across-the-board’ voluntary adoption. What could we create that would recognise the rights of persons with dementia? What would empower us, and our allies, and communicate our rights succinctly and forcefully and be credible? How could our message be most effectively developed to encourage adoption?

We not only reflected on the international Charters focused on people with dementia and the work of Dementia Friends and dementia-friendly communities, but we also looked at Canada’s own Charter of Rights and Freedoms.

Moving beyond theory

By this time, we were aware that rights are not simply assigned nor is respect automatically given to country’s citizens simply through documents like the Universal Declaration of Human Rights or Canada’s Charter of Right and Freedoms. It is therefore incumbent on all of us to define our expectations, which is what the Advisory Group members did with its Canadian Charter of Rights for People with Dementia.

Canadian Charter of Rights for People with Dementia

Point 2: To benefit from all of Canada’s civic and legal rights.

This right overrides the stereotype of a person with dementia, because when you consider the stigma or the stereotype that is actually a diminishment of rights. But this [point] says quite clearly that a person with dementia does have the right. (Advisory Group member 2018)

Our intent was to challenge what seemed to be the status quo of persons with dementia: incapable, incompetent and vulnerable immediately upon receiving a diagnosis of Alzheimer's disease or other form of dementia. We saw the need to challenge the stigma of dementia while at the same time formalise our expectations and being clear we legitimately have rights and especially the right to give our own consent and make our own decisions, as long as we are able.

We have all heard or read about changing the culture of care. Well, we wanted to drive change in how dementia is viewed in the community-at-large and how dementia-specific and mainstream services are designed and delivered. We also intended our Charter to create a space for conversations with Canadians, especially with service providers with whom we interact, such as medical practitioners and businesses, as well as serve as a tool to influence public policy.

And finally, after 18 months of hard work developing, drafting, revising and many discussions, our Charter saw the light of day with its release during World Alzheimer's Month, in September 2018.

Now what?

The Advisory Group met in Toronto at the end of October 2018 to celebrate the unveiling of our Charter where I said the Charter ‘is not meant to sit silently on a book shelf’ and I think it’s fair to say our members cannot and will not let that be an option.

Canadian Charter of Rights for People with Dementia

Point 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.

But the minute that you’re diagnosed doesn’t necessarily [mean] you are unable to make decisions or anything for yourself. (Advisory Group member 2018).

Our Charter has initiated much-needed conversations, but those have only just begun. It is being displayed at some universities, long-term care homes, clinics and community organisations – they are the early adopters. We hope and expect our Charter will be posted in many more public spaces and in many more locations as the public becomes more aware of the Charter and understands and appreciates its relevance.

Will it cause a radical and immediate change or adjustment in thinking, acting and caring? Of course not. But will it get people to reflect on how they see, interact and care for their spouse, their co-worker, patient, family member or friend with a dementia? That certainly is our hope and our expectation.

For me personally, I’m extremely proud of our group of eight people with dementia and what we’ve been able to achieve together with our colleagues at the Alzheimer Society of Canada. We may all have our own perspectives and backgrounds, but we are all keenly aware of the stigma around us. Collectively, we have the desire – the need – to do our part to improve the quality of life – our own quality of life – for people living with dementia.

Will the Charter collect dust on the bookshelf? Not if the Advisory Group can help it. As we continue to meet over the next months, we will be giving some thought on how to ensure the Charter gets directly into the hands of those who can influence and help change the conversation of dementia. The usual groups, like medical teams, should be made aware of the Charter, but there are so many others – medical and health-care students, public services, policy and decision-makers – who stand to benefit from being introduced to the Charter, understanding what it says and, frankly, what it means. Rest assured the Advisory Group is determined to come up with an action plan!

One day as I was writing this article, I found out it was #CharterDay, a day that recognizes the Canadian Charter of Rights and Freedoms. In a tweet, our Prime Minister, Justin Trudeau, wrote that it is ‘up to all of us to safeguard it & the freedoms it protects for each other’. And that’s how I feel about our Canadian Charter of Rights for People with Dementia. We, all of us, need to safeguard it from being shelved or dismissed as being impotent and of no legal standing. We need to protect it from those who might question its relevancy or even its need.

The Charter’s impact will be felt gradually, but I’m confident it will change attitudes, ways of doing business and how care is delivered. For this to happen, it will take the effort of every single person living with dementia and, indeed, every Canadian to protect and respect the rights of people with dementia so that we are seen as capable, valuable and vital community members.