A dementia caregiver’s perspective on health care trajectories

January 16, 2025 —

“If caregivers went on strike, even for just one day, the health care system would be flooded and inundated. It would not be prepared to meet the needs of patients with dementia,” says Katrina Prescott, who cared for her mother, Kathryn Love, from dementia diagnosis until death.

Katrina now advocates for the needs and rights of caregivers as co-chair of the Canadian Caregivers Advisory Network.

��ϱ�analysis shows that, on average, caregivers of people living with dementia provide 24.5 hours of care per week, compared with 19.7 hours provided by caregivers of people who have other conditions. These caregivers may provide essential services that range from managing medications and scheduling appointments to feeding, dressing and personal care.

According to CIHI’s recent report A Step Toward Understanding ��ϱ� Care Trajectories of People Living With Dementia (PDF), there are likely more than 400,000 dementia caregivers in Canada.

Most of these dementia caregivers (52% in 2020–2021) are adult children caring for their parents or parents-in-law. Many juggle multiple responsibilities including work, education and parenting on top of caregiving. And these caregivers typically do not receive formal support or financial compensation.

Getting a diagnosis is part of caregiver challenge

Dementia is a complex condition. can cause it. include mood changes, visual-information challenges, language issues and more.

Dementia is often underdiagnosed or misdiagnosed — and diagnoses that do happen are often delayed, occurring after the condition has progressed to a point that it interferes with a person’s daily life.

“Little things started happening. She emptied her bank account and gave it to a charity, she said, and she was having a lot of what I thought were vision problems.” Katrina says of her mother’s early symptoms. “She loved driving, she loved reading, and she had stopped doing those things, and I couldn’t understand it.”

Katrina took steps she hoped would help, but she lacked the proper diagnosis until later.

“I moved her into my building, and I thought she would get better,” Katrina explains. “I was wrong. By the time we finally got a diagnosis … she’d gone missing overnight twice. Things rapidly deteriorated.”

Family doctor roles and care navigation limits

“My mother did have a family doctor, and he was actually very helpful for navigating processes like how to get a disability tax credit, for example, because he knew the system,” Katrina says.

However, the care that family doctors can provide for people living with dementia is typically limited. As a person’s symptoms progress, they need to navigate broader health care systems, from emergency departments and hospitals to home care and long-term care.

This navigation isn’t easy. And it’s often done by caregivers with limited to no formal resources to support them.

“I didn’t just have to learn dementia, I had to learn how to advocate as well,” Katrina reflects. “And I learned this through another caregiver who had navigated the system and knew which words to use.”

Home care, out-of-pocket expenses and job pressures

Home care and community support services may provide help with activities of daily living and caregiver stress. But services that aren’t well-coordinated or that don’t provide consistent, well-trained staff can add to stress.

“At first, I was able to get 50 minutes a day, 3 days a week of home care services. Which would actually have been more difficult than having none, because it would have interrupted our schedule and my mom would have been upset,” Katrina explains. “When we did get home care services, there was only one home care nurse who could work with my mom.”

To fill gaps, many dementia caregivers may pay out of pocket for private home care. As her mother’s dementia progressed, Katrina chose to hire paid help so she could continue working in her job as a producer.

“I had to work at the time. Mom had a pension, but it wasn’t much,” Katrina recalls. “Plus, if I left the workforce, was I ever going to get back in?”

It’s a decision many caregivers face.

“I was 44 when she died. If I’d stopped working, I would have been getting back into the workforce at 46,” Katrina says. “I was constantly making strategic decisions — not just in caregiving, but in my life.”

Caregiver distress more common than for other conditions

The care provided by dementia caregivers is essential, and it can benefit people living with dementia as well as caregivers themselves.

Yet CIHI’s recent report found that dementia caregivers are more likely to experience distress compared with other caregivers.

Data shows that 38% of caregivers of people living with dementia experience distress, anger or depression. Only 23% of caregivers of people living with other conditions experience the same.

“The hardest part about being a caregiver is the mental work and constant strategizing to keep things smooth,” Katrina observes.

Added to this challenge is fragmentation of care throughout health care systems, as well as the management of what may be changing physical, behavioural and psychosocial symptoms as dementia progresses.

More support is needed for dementia caregivers

CIHI’s recent report (PDF) found that people living with dementia had higher odds of being admitted to a long-term care facility if their caregivers experienced distress, anger or depression or felt unable to continue in their role.

As the number of people living with dementia grows, it’s clear their caregivers will require greater support.

“I was in my mid-30s at the time [of my mother’s diagnosis] and I was burned out by the process,” Katrina reflects. “If I had to do this again, I’m not sure if I could. I don’t know how other people are doing it who are older than me and have less resources.”

If you are a dementia caregiver seeking support, connecting with the following organizations and resources may help:

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