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Help reform capacity and decision-making laws

Help reform capacity and decision-making laws

As my father-in-law aged, and when he developed dementia, my husband became his primary caregiver and power of attorney. I’m a lawyer who has devoted a significant part of her career to research and public policy work on issues related to disability, aging and caregiving. There’s no doubt that my professional background was useful as my family tried to understand what everyone’s rights and responsibilities were at each step of the way, find the necessary services and resources, be good advocates, and do the right thing for someone that we loved. But it was surprising how difficult it often was, even so, to find the right information, understand the choices available, and navigate all of the complicated systems at play.

I think about this experience often as I work on developing reforms to law, policy and practice around legal capacity and decision-making. I know these challenges are ones that are shared by many other Ontarians. When the Law Commission of Ontario did public consultations in 2011 on issues related to older adults and the law, concerns about legal capacity and decision-making were identified as urgent by many older adults, family members and professionals: that’s why we undertook this project.

As my experience, and that of many others illustrates, there is always a gap between the law as it is envisioned by the drafters, and the law as it is implemented and experienced on the ground. For laws to meaningfully address people’s needs, and to do so in a way that is clear and fair, they have to take into account the everyday experiences of all of the different people that they touch.

This is one of the reasons why the Law Commission of Ontario believes that everyone should be given the opportunity to be part of the development of laws that touch their lives. To help us to understand what works and doesn’t work in the law about capacity and decision-making, and how this law can be improved, the Law Commission wants to learn from the experiences and perspectives of those most directly affected, including family caregivers, people who receive assistance with decision-making, professionals, service providers and experts. Please tell us about your experiences and your aspirations for change by filling out our consultation questionnaires at http://www.lco-cdo.org/en/capacity-guardianship.

Lauren BatesLauren Bates, Senior Lawyer

Law Commission of Ontario

Susan Parish: Champion for Dementia

Susan Parish: Champion for Dementia

As a graduate from nursing at Western, Susan understood the devastating impact of dementia.  Prior to retirement, she worked for ten years in a long-term care home in Lindsay, where many residents had Alzheimer’s disease.

It was after retirement that Susan noticed unsettling cognitive changes. During the summer and fall of 2009, Susan began to feel very nervous when driving. Her husband Brian also noticed subtle changes in spelling, numeracy, comprehension, memory and coordination.  After a prompt referral to a Gerontologist in Peterborough and a specialist at Toronto Western, she was definitively diagnosed at age 60 with Post Cortical Atrophy (PCA), an atypical variant of Alzheimer’s.

The next year was dark for Susan, Brian and their family. But one day, she had a change of heart. Perhaps because of the “nursing” in her blood, she knew that wallowing in self-pity would change nothing. To help herself, she decided to reach out and help others.  As a first step, she invited a journalist friend in Lindsay to help her “out” herself to the community. The article also focused on the importance of early diagnosis and how denying it only perpetuates stigma.

With the encouragement from the local Alzheimer Society, she became a ‘Champion of Change’ for the Kawartha Lakes area, advocating on behalf of people with Alzheimer’s at the local, provincial and federal level.  On a visit to her local MPP with local Alzheimer Society staff, she posed questions about funding for research, capacity of long-term care and the need for better home care that were met with  sincere interest and concern.  She has communicated with politicians at all levels about these issues and also the importance of a National Dementia Strategy.  She believes these concerns must be on the political agenda.

Susan has continued as a prominent spokesperson for those with the disease. In 2012, she presented the keynote speech at the annual Alzheimer Society General Meeting in Peterborough. Last January, she was interviewed by CTV health reporter Avis Favaro.  Her performance on The National was also inspiring.  In that interview Susan said, “we choose to live with Alzheimer’s.” And she has lived by those words.  Since her diagnosis, she and Brian have travelled to Peru, Kenya, Western Canada, Turkey, Eastern Canada, Arizona and will be visiting Patagonia this February.

Susan is also now involved with the development of a “Dementia Friendly Downtown” program, where local shop keepers are encouraged to address the needs of customers with dementia. Susan and her local Alzheimer staff partner recently presented their ideas to the Bobcaygeon Chamber of Commerce members.  They were receptive.  After an initial trial in Bobcaygeon and some “tweaking,” she hopes to present the idea to the Chamber of Commerce in the much larger town of Lindsay, with the hope of full implementation.

With her experience in long-term care as a nurse, Susan knows that those with dementia require special accommodations.  Currently in Canada, these special accommodations are rare.  Susan would like to see that change. She is particularly interested in the promotion of specialized small group, residential homes similar to some that are functioning well in Great Britain, Europe and the United States.

Susan became a Dementia Champion because it allowed her the opportunity to do something that could help others. “I knew I had to do something. I couldn’t just sit here doing nothing.” Susan heartily recommends anyone interested in advocating for dementia to get involved as a “Champion for Dementia.”

Visit our website for how to become a Champion for Dementia.

susan-parishSusan Parish

Champion for Dementia

Behind the scenes at the Finding Your Way launch

Behind the scenes at the Finding Your Way launch

On March 26, 2013, the Alzheimer Society of Ontario officially launched  the Finding Your Way program. This groundbreaking safety initiative is designed to promote awareness about the issue of people with dementia getting lost among the public and law enforcement. In addition, it provides information for caregivers on how to prevent a person with dementia from going missing and what information to have ready in case he or she does.

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The 2010 Retirement Homes Act

The 2010 Retirement Homes Act

The Retirement Homes Act was passed by the government of Ontario in 2010. Its fundamental principle is that retirement homes are to be operated as places where residents live with dignity, respect, privacy and autonomy, in safety, security, and comfort and can make informed choices about their care options. In practice, this has increased the accountability of seniors’ homes and provided greater recourse to seniors who feel that their rights have been violated.

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