Caregivers often forgotten as member of care team for those with dementia

Dr. Zahinoor Ismail, MD, wants to learn more about the mental and physical load caregivers experience as they look after someone with dementia. As a clinician and researcher, Ismail says caregivers play a central role with little to no support or recognition.

“It’s essential when providing dementia clinical care that you speak to caregivers. They are fundamental to the process,” says Ismail, a neuropsychiatrist at Alberta Health Services and professor at the Cumming School of Medicine.

“Due to concerns about confidentiality, our primary care system often doesn’t involve a caregiver early on, leaving them without a voice. Then our system doesn’t support the caregiver through someone’s cognitive decline until substantial functional impairments are evident.”

Ismail’s concern for caregivers is shared by Gordie Howe CARES. The charity is supporting a national study led by Ismail aimed at understanding the challenges faced by caregivers, health-care professionals as well as family members and friends.

“Gordie Howe, fondly known as Mr. Hockey, was the caregiver for his wife, Colleen, as she experienced cognitive decline. Later he developed dementia and relied on help from his children,” says Jay Haralson, board chair, Gordie Howe CARES. “The family understands the struggles and hopes to see more strategies and mechanisms to support caregivers through the journey.”

Ismail has developed two scales to measure levels of stress, one for informal caregivers, like family members or friends, and one for formal or paid caregivers, like nurses, physicians, care aids and companions.

"When I hear when someone hits a home care worker, who then won’t come back, and now the family member can’t go to work, I often wonder, what is it like for them, how can we help them?” says Ismail. “There are so many complex pieces. We need a better understanding of what happens over time for caregivers, both in terms of risk and resilience, so we can inform system change.”

The caregivers’ study is part of a larger study on brain aging called CAN-PROTECT. Participants sign on in pairs. There are brain training games, and annual assessments of cognition, function, behaviour, quality of life, diet, and lifestyle. Ismail says the platform will allow us to boost our understanding of brain aging and maximize research on dementia prevention and treatment. Caregivers would register as CAN-PROTECT participants and also identify as caregivers to complete the additional questionnaires, which will help better understand their experience.

Dementia can be treated, but not cured. As cognition and function decline for the person, responsibility increases for the caregiver.

“At first, caregiving may include helping with finances, picking up groceries, and taking a person to appointments,” says Ismail. “Responsibilities increase as time goes on, feeding and toileting the person. Adding to that there can be the increasing challenge of being asked the same question multiple times or dealing with lost items, difficulties relaying instructions, or coping with behavioural or personality changes.”

Ismail is also a scientific adviser for Gordie Howe CARES. The group developed Ripples, an online engagement tool and community platform for caregivers to share experiences and ask questions.

CAN-PROTECT is open to any Canadians 40 years of age or older. Learn more about the study.