WHEN MEMORIES FADE
chris jost with his mother, Patricia, who has Alzheimer’s. the Alzheimer’s Society of Calgary, which supports caregivers, is A recipient of the Herald Christmas Fund.
Christopher Jost stepped up when a social worker alerted him that, among other warning signs, his mom Patricia had absent-mindedly melted a few pots on the stove of her Windsor, Ont., home.
Jost recognized that Patricia’s cognitive impairment had progressed and she needed more care. In July, he moved his mom across the country to live with him, his wife and teenage daughter in Calgary. While he describes Patricia, 73, as “high-functioning,” caring for her was challenging. A few months in, he enrolled in a Caregivers Strategies for Dementia workshop run monthly by the Alzheimer’s Society of Calgary.
“I found it incredibly insightful and exactly what I needed,” says Jost, 47.
Dementia (Alzheimer’s disease is one type) is fast becoming a health and societal crisis. The fatal, degenerative brain disease has no known cause or cure but it affects 564,000 Canadians and about 17,000 Calgarians — about 10 per cent of our city’s seniors, according to figures from the Alzheimer’s Society of Calgary. The charity expects these numbers will double within the next 15 years.
In the six-hour workshop, Jost and fellow participants learned about the many kinds of dementia and the changes happening in their loved one’s brain. They prepared for the future, including the possibility that the person with dementia may stop recognizing family and friends. They also received practical caregiving strategies.
“Education is vital for caregivers. It’s deemed to be one of the most critical interventions and the demand for it is growing dramatically,” says Barb Ferguson, executive director of the Alzheimer’s Society of Calgary, one of 12 recipients of the 2018 Calgary Herald Christmas Fund. The non-profit plans to use its share of the fund to double the number of Caregivers Strategies for Dementia workshops in 2019 and increase the reach of its public education programs.
Navigating the system is difficult for caregivers, says Ferguson, as is communicating with dementia sufferers, answering repetitive questions and coping with seemingly exasperating behaviours.
That’s why developing skills is vital, she says. “Every behaviour has meaning, (they) may be in pain but can’t tell you. You need to interpret what that behaviour means.”
Self-care is emphasized in the Caregivers Strategies for Dementia workshop. Fully half of people diagnosed with dementia live at home and 97 per cent have a family member who takes on responsibility for their care — a huge impact on families. It can cause stress, social isolation and health issues such as high blood pressure. About 30 per cent of caregivers experience depression.
A study published in the Journal of the American Medical Association found half of all family members who care for people with dementia die before the patient does, or they become seriously ill due to self-neglect.
“More often than we’d like, the caregiver ends up in hospital,” says Ferguson, adding this can throw the family, including the person with dementia, into crisis. “We’re trying to prevent crises. By doubling our caregiver program, we’re hoping to alleviate some of the pressure.”
In the workshop, Jost learned to never argue with someone with dementia about their memory. For example, he’s put electronic tiles on Patricia’s purse and other belongings that regularly go missing and he tracks them down with a smartphone app. “We just make a beep and find it,” he says. “You don’t disagree with the person, you don’t tell them they’re wrong. It’s helped immensely.”
He also found that meeting others caring for loved ones at different stages of dementia gave him a clear sense of what might lie ahead and helped him plan for it.
For now, Jost says Patricia has episodes of mixing up people, names and situations or getting aggressive and stuck in a “negative loop,” which is very stressful for the family. Mostly, she’s selfsufficient and “sharp as a whip. We get along well.”
The hardest part is filling her days, so Jost, executive director of Infantcare Alberta (formerly NeighbourLink Calgary), takes Patricia to work with him. She knits, writes in her journal, watches a movie or does a bit of sorting in the non-profit’s warehouse.
Patricia says she was nervous about moving to Calgary but feels very comfortable in her new home. “I’m so happy with him, with his wife, with their child. It’s precious.”