Advocating for people suffering from dementia

In 2016, 85-year-old Fred van Zuiden from Calgary was charged with murdering his wife Audrey, possibly mistaking her for an intruder. As a person living with dementia, van Zuiden was found unfit to stand trial and approved to stay at a seniors home. The problem was no spots were available in Alberta. He waited for more than a year in a forensic psychiatric ward, a place not equipped for seniors with dementia, and his health worsened. He was finally moved to a residential care facility in late 2017 and passed away in January 2019.

His story is one of the many reasons why Heather Campbell Pope is devoted to helping people with dementia caught in the criminal justice system. Her new business, Dementia Justice B.C., was recently approved by the Law Society of British Columbia for its innovation sandbox. The objective of the sandbox is to improve access to justice by improving access to legal services. Pope’s business, an offshoot of her nonprofit organization Dementia Justice Canada, will be one of the few legal businesses focused on providing legal services to people with dementia.

“I want to help people navigate this system,” says Pope. “People contact me saying my mom or dad got arrested and they don’t know what to do. l can refer them to a criminal defence lawyer, but people need help beyond the courtroom. This is an opportunity for me to apply my professional knowledge.”

After articling with the Canadian Centre for Elder Law, Pope ran her own firm and worked as a lawyer at Seniors First B.C., as a project management analyst with the B.C. Ministry of Health’s Seniors Action Plan Team. She also served as Director of Policy and Research at the B.C. Care Providers Association. When 94-year-old Jack Furman, who had dementia, killed his roommate at a special care long-term facility in 2013, Pope began to research people with dementia and criminal law. She completed her master’s degree in law focused on elder law and started Dementia Justice Canada in 2017.

“At the time, there was discussion about a national plan for dementia,” says Pope. “But there was little talk about criminal justice and how this community is affected. When we talk about criminal justice, the main focus is rightly on elder abuse. We also need criminal justice reform for accused persons.”
 

According to the Alzheimer Society, more than 500,000 people in Canada have dementia, including roughly 62,000 people in British Columbia.

Dementia Justice Canada also focuses much of its efforts on policy reform and advocacy. Pope made submissions to federal and provincial governments, summarizing her 18 recommendations for legislative and police reform in her 2019 report, “Nowhere to Live: Housing Vulnerability of Criminal Defendants with Dementia.” That same year, the Public Health Agency of Canada published Canada’s first national strategy on dementia. “Older inmates are mentioned in an appendix,” says Pope. “We need something more.”

While most people with dementia do not commit crimes or have contact with police, the few who are caught in the system face housing issues and the ability to get legal counsel. Prisons are not equipped for elderly people with health issues. Long-term care homes are reluctant to admit people with criminal records, so many end up staying in prison or sent to psychiatric hospitals.

“We need more specialized behavioural units in geriatric or psychiatric wards,” says Pope. “In forensic psychiatric wards, they get in trouble with responsive behaviours. For example, one of the symptoms of dementia is aggression or agitation. The problem is the symptoms are the behaviours that will keep you there. For example, in Ontario there was a man who shoved pizza at a nurse and he ended up staying in the forensic psychiatric ward for years. He should’ve been in a nursing home.”

Personal agency is critical. Isobel Mackenzie, B.C.’s Seniors Advocate, says people living with dementia want to know their legal rights, especially about making decisions for themselves.

A major issue is determining the capacity to make legal decisions. Dementia is not a single diagnosis but a spectrum. Mackenzie points out that cognitive impairment can be temporary, caused by medication, infection, or delirium triggered by hospitalization or other factors. “Capacity can fluctuate,” says Mackenzie. “Capacity is seen as binary but it can be more nuanced, such as people who have others taking care of their finances but not their healthcare decisions.

The Canadian Centre for Elder Law, based at the University of British Columbia, is one of the few programs in B.C. focused on providing legal representation for people with dementia. Krista James, National Director of the Centre, says stereotypes hamper the community in accessing legal services.

“People often assume people living with dementia lack intelligence or judgment and are not able to protect themselves,” James says. “There’s a lack of respect for the inherent value of their lives. The opposite of stigmatizing people is having respect and understanding.”

Other services aimed at helping access to justice issues like offering unbundled legal services aren’t the right approach for people with dementia since the client needs to manage files. James says lawyers need to learn to communicate to people with dementia compassionately. She recommends writing retainers in plain language, providing short explanations before giving clients large amounts of paperwork, and keeping meetings short and focused on a small number of issues. 

“Capacity and the ability to understand is influenced by the environment,” says James. “Litigation can be a harmful experience. Lawyers tend to speak fast and that can be confusing. People are not at their cognitive best when they’re in a stressful situation.”

Through Dementia Justice B.C., Pope will help families navigate housing and legal counsel issues, including applying for compassionate release, filing human rights complaints for being denied re-entry to long-term care homes, and providing legal information about the court process.

Her business is bolstering capacity,” says James. “We need more people who understand dementia and can provide legal assistance.”