Putting the person back in dementia care

Meet Sienna Caspar

Sienna Caspar is one of many Canadian researchers dedicated to making life better for people with dementia.

In 2012, Sienna received a Doctoral Award through the Alzheimer Society Research Program (ASRP) to study person-centred care for long-term care (LTC) residents living with dementia. But long before she received her award, she already understood the critical role of frontline care aides.

This PhD candidate at the University of British Columbia spent more than 15 years working as a certified therapeutic recreation specialist in LTC facilities. Three years ago, she lived with her late husband in a palliative care unit while he faced stage 4 cancer and developed dementia.

“I saw first-hand how information exchange between care providers is critical to delivering individualized, responsive care to people who are no longer able to speak for themselves,” recalls Sienna. This experience led to her decision to focus on resident-care information exchange in LTC facilities.

Through her ASRP research, Sienna shadowed care aides in three facilities and then interviewed them about their experiences working in LTC facilities. “I’d arrive 15 to 20 minutes before the shifts began, and stay late to see shift transitions,” explains Sienna. I wanted to understand how individualized resident-care information was being shared between care staff members.”

Among her findings: although provincial regulations mandate detailed written care plans for all residents, frontline care aides rarely have practical access to these documents. "They’re allowed and encouraged to read the care plans, but the system doesn’t ensure they have the time to do this in their day-to-day work. Consequently, care staff members who provide between 80 and 90 per cent of the direct care to residents, have never read or referred to the care plans developed." In addition, Sienna found that care aides preferred to share individualized resident-care information orally, rather than in written form.

Having structured, two-way oral communication team meetings during and between shifts may be a solution. It’s also important to include care aides when developing and reviewing care plans, and any initiative for improving care. But Sienna acknowledges larger systemic issues must be addressed – staffing levels, mandated emphasis on written documentation for information exchange and complex regulations that don’t give managers time to support the frontlines.

“I definitely saw beautiful examples of caregivers who were really in tune with residents and were wonderfully responsive to their needs,” says Sienna. “The level of responsiveness of the managers and team leaders to staff needs was reflective of the level of responsiveness the care aides exhibited towards the residents.”

Sienna adds that ASRP allowed her to research full-time and walk in the steps of care aides. “This funding is the only reason I could get such deep, rich data.” It will help ensure residents and care aides are listened to, and that residents receive the best possible care tailored to their needs.

For 25 years, the Alzheimer Society Research Program (ASRP) has been funding peer-reviewed Canadian research aimed at improving prevention, diagnosis and treatment, as well as finding a cure. To date, over $40 million has been invested in the work of researchers like Sienna Caspar.

Last Updated: 11/08/2017