Given the gravity and grief of the long-term care situation and the devastation suffered by residents, most of whom have dementia, I would like to share my thoughts on rights-based dementia advocacy.

A thread.

3 years ago, Parliament passed a law mandating Canada, in cooperation w/ provs and terrs, develop and implement a comprehensive national dementia strategy. Prior to its passage, we expressed concern that the proposed law did not mention rights or dignity:

https://sencanada.ca/content/sen/committee/421/SOCI/Briefs/SOCI_C-233_Brief_DementiaJustice_e.pdf

We also expressed concern that the proposed composition of the ministerial advisory board did not include a justice sector representative (eg, a lawyer like @geezerlaw @WELPartners @KristaElan @ltamblynwatts et al). And that the board's mandate was limited to health care matters.

In committee, then-Senator Art Eggleton raised our concern about the absence of a justice rep. The MP co-sponsoring the bill replied:

"This is a health bill."

(He did note, however, that the proposed law didn't preclude other issues like justice.)

https://www.dementiajustice.com/submissions.html

No changes were made to Bill C-233. The National Strategy for Alzheimer's Disease and Other Dementias Act was passed without any mention of rights or dignity, nor any guarantee that an elder rights expert would have a seat at the table.

https://www.canlii.org/en/ca/laws/stat/sc-2017-c-19/130955/sc-2017-c-19.html

In 2018, the fed government hosted a National Dementia Strategy brainstorming conference. The initial program did not include a discussion of legal issues (eg, elder abuse, MAiD, capacity to make decisions, criminal justice). To its credit, the govt partly corrected this.

Per the legislation, the Minister of Health appointed the National Dementia Strategy advisory board, composed of an impressive group of individuals. But the Minister did not appoint an elder rights expert.

Last year, Canada released its National Dementia Strategy. It envisions a society in which every person with dementia is valued. To achieve this, it calls on all levels of govt to prioritize quality of life & respect the human rights of ppl with dementia.

https://www.canada.ca/en/public-health/services/publications/diseases-conditions/dementia-strategy.html

While extremely vague, the strategy’s human rights lens was an important milestone for the dementia advocacy community. With a focus on preserving autonomy and dignity, the plan stresses the importance of upholding Canada’s domestic and international human rights commitments.

Throughout the pandemic, the national dementia strategy has been collecting dust. Its human rights language has become nothing more than political veneer on a superficially attractive document. From a rights perspective, the dementia strategy is fundamentally meaningless.

Over 80 percent of COVID-19 deaths in Canada have been long-term care residents, according to a June report by CIHI. Given that approximately 70 percent of long-term residents have dementia, it is highly likely that a significant number of COVID-19 victims have dementia.

Many surviving residents have suffered--and continue to suffer--prolonged isolation and loneliness. The Canadian Armed Forces reports on Ontario and Quebec also detail disturbing conditions of neglect and other severe violations of rights and dignity.

Rights are meaningless if they cannot be enforced. And if they're not actually based in law. This is why I've been critical of the Alzheimer Society's "Charter of Rights for People with Dementia." We should be educating people about their actual rights.

https://alzheimer.ca/en/Home/Get-involved/The-Charter

Despite the (rhetorical) language of human rights, access to justice and rights-enforceability have been consistently overlooked by many partners in the dementia advocacy movement. Indeed, it's been another group leading the legal charge against Charter violations. @LDBildy

Last month, I outlined my course of action to help make a small but hopefully meaningful contribution to the challenges some of our most vulnerable seniors face:

https://www.dementiajustice.com/posts/statement-for-world-elder-abuse-awareness-day

. @DementiaJustice continues to urge the Health Minister to appoint a justice sector rep to the National Dementia Strategy ministerial advisory board. The board's mandate should also expand beyond health care matters. Access to justice is important. @PattyHajdu @DavidLametti

In 2012, (former) Chief Justice McLachlin said that "dignity is the central, guiding concept in our approach to the elderly."

The law can be a useful tool in ensuring dignity is respected in old age. Let's give life to human rights.

https://www.stetson.edu/law/agingjournal/media/JIALP-VOL6-FULL.pdf cc @picardonhealth