A diagnosis of dementia can completely alter the course of a person’s life, as well as the lives of those around them. For family and other loved ones, this often means taking on the role of unpaid caregiver.

Caring for a senior, regardless of whether they are living with dementia, can come with great sacrifice. According to CIHI’s Unpaid caregiver challenges and supports, unpaid caregivers of seniors with dementia spend more time in their role and are twice as likely to experience distress compared with people caring for seniors who don’t have the disease. There is also a significant out-of-pocket cost, estimated at $1.4 billion a year nationally.

The roles and responsibilities associated with caregiving can differ depending on the care recipient’s symptoms and relationship with their caregiver. These also change as the disease progresses.

To learn more about the role of unpaid caregivers, we spoke with 3 women who are currently caring for a loved one with dementia to get a first-hand account of their experiences and challenges.

Linda’s story

One of the biggest challenges Linda faces as a caregiver is finding new and creative ways to provide care to her mother. Rose,* who was 78 when she was diagnosed with Alzheimer’s disease 5 years ago, has been in denial about her diagnosis ever since. “She doesn’t want to interact with me if she feels like I’m looking after her,” says Linda.

The fact that Rose is in denial about her diagnosis is not surprising. Almost 50% of Canadians would not want others to know if they were diagnosed with dementia, according to recent survey findings from the Alzheimer Society of Canada.

The progression of Rose’s disease has been slow so far, which has allowed her to remain in her home of 60 years.

At this stage, Linda’s caregiver role includes practical things like bringing her mother meals, taking her out for errands and including her in family activities, whether acting as Linda’s sous-chef at family dinners or staging their rental property. Linda admits that, though her mother won’t accept anything that looks or feels like care, her diagnosis has brought them closer together. “I’ve had to commit more time to her and I’ve had to become creative in how I can be effective in her life. What matters is my relationship with her in the last years of her declining life.”

When Rose was diagnosed with Alzheimer’s disease, Linda convinced her to update her legal documents, where she instated a personal directive to not live with her children. To Rose, it would be the ultimate burden.

Caring for a loved one with Alzheimer’s disease is not easy, and to help with this, Linda participates in a caregiver support group hosted by the Alzheimer Society. “The Alzheimer Society support group is invaluable in helping me make sense of this disease,” she says. “The facilitators are well trained, and other caregivers at various stages of the experience can provide respectful feedback and suggestions when I am dealing with challenges.”

Linda does not doubt that Rose’s Alzheimer’s disease is progressing. Recently, she started showing signs of delusions and confusion. For now, Linda is focusing on bringing her mother joy and giving her life meaning wherever she can. “Joy is a big thing in her life. We’re blessed because she is grateful. Maybe it’s because we’ve shifted our attitude but she lives in gratitude. Whenever I do anything for her, she says ‘thank you, thank you, thank you.’ Anything small or large — she lives in gratitude.”

* This name has been changed to respect the privacy of the individual.