By Adam Frisk Local Journalism Initiative Reporter
Ontario’s home-care framework fails families dealing with dementia, leaving unpaid caregivers to carry much of the responsibility until a crisis forces them to seek help, according to one of the region’s top specialists.
Dr. Jenny Ingram, a geriatric medicine specialist, explores the issue in No More Silent Battles, a documentary about dementia care in Peterborough and the Kawarthas. The film follows four local families and looks at how provincial programs fall short, while also suggesting changes to the way dementia care is funded and delivered.
“On day one of a dementia diagnosis, it’s largely a time-limited medical appointment,” Ingram told The Highlander in a recent interview. “There is no organized offering of information for everybody. It’s all left on the shoulders of the family to figure it out.”
Families can struggle to find early support in a diagnosis. Ingram said that public home-care interventions are often brought in only once a patient is in crisis or ends up in a hospital. She also pointed to provincial intake forms that, she said, treat cognitive decline as an afterthought, focusing on physical disabilities instead.
“The tools are very sensitive to physical challenges, but very insensitive to cognitive difficulties,” Ingram said.
That disconnect becomes obvious when contracted home-care workers arrive at a person’s home. Agencies often work on tight schedules, with personal support workers expected to complete tasks like bathing within a set amount of time. Ingram said for someone living with memory loss, having an unfamiliar face rush them through something like a bath can be frightening rather than helpful.
“People with dementia don’t function well when they’re on the clock,” Ingram said. “Home-care providers are untrained, unfunded, and unable to add the time commitment and complexity that dementia requires. And the government sanctions this and endorses this. They just give them a set amount of time and if you don’t get it done, tough. That’s not a dementia-sensitive home-care system. That is kind of like a production line that’s on a timer.”
When the support isn’t there, family members are forced to fill the gap themselves. Citing data from the Alzheimer’s Society, Ingram said 82 per cent of unpaid caregivers in Canada are under the age of 65. Many have to reduce their work hours or leave the job altogether. She said caring for a relative with dementia requires an additional 10 hours a week compared to assisting someone with a physical illness alone, contributing to an estimated $25 billion in lost wages each year in Canada.
“That doesn’t really take into account those who stay in the workforce but are both distracted and having to leave on and off during the workday or the work week to deal with issues as they arise,” Ingram said. “Because as you know, dementia doesn’t go to bed.”
The number of people diagnosed with dementia in the province is expected to triple over the next two decades. Ingram said relying on family caregivers cannot continue without putting even more pressure on them.
The documentary highlights examples of care that take a different approach. In one Peterborough case, lawyer Jane Rutherford hired a private companion for her father, Bill, who frequently wandered from his care facility. The companion began taking Bill out to golf in the summer and to play pool in the winter. The regular routine helped keep the father safe while also giving him activities he enjoyed.
No More Silent Battles proposes two changes at the provincial level. One would create a credentialed “Dementia Support Worker” role, with specialized training and higher pay. The other would establish Dementia Care Ontario, an agency modelled after Cancer Care Ontario that would help co-ordinate care from initial diagnosis through end-of-life.
For families trying to manage dementia care at home in the meantime, Ingram offered some simpler advice: don’t spend energy trying to tell a loved one their version of reality is wrong. Instead, she suggested changing the way the caregiver responds.
“The only person who can voluntarily change their approach is the care provider,” Ingram said. “Living in the present moment, avoiding arguments over past details, and meeting them right where they are makes for pleasant, if not joyful, days.”
A screening of No More Silent Battles will take place at the Northern Lights Performing Arts Pavilion on Sept. 8, at 7 p.m. Admission by donation. A panel discussion with Ingram will follow.
