Dementia caregiver stress the focus of U of L study

Many studies focus on the impact of dementia on patients and their families, but for the first time, the spotlight is on the stresses faced by caregivers.

Researchers at the University of Lethbridge, along with Alberta Health Services, hope to shed light on moral distress.

Dr. Shannon Spenceley, principal investigator for the study, refers to the difficult and sometimes ethically-challenging decisions in caring for dementia patients.

“Perhaps a nurse knows that care given to a patient is futile in lengthening life or reducing pain, but is powerless in changing the course of treatment because that decision is made by others,” she said.

“It’s hard to communicate their needs,” added Colin Zieber, South Zone director of seniors health for Alberta Health Services. Zieber is no stranger to front-line care, having spent a decade as a psychiatric nurse.

“The care provider is often left to guess or determine the needs themselves,” said Zieber.

Southern Alberta caregivers are already being consulted. A survey will ask nurses what contributes to moral distress, and possible ways to limit it.

“Ultimately, what we want is a healthier and happier workforce caring for this vulnerable population,” said Spenceley. “The goal is to find some solutions.”

Figures from the Alzheimer’s Society of Canada show 747,000 Canadians living with a form of dementia. That number is expected to double in 25 years.

“We’re going to be potentially losing very caring people who may not be able to deal with effects of moral distress,” said Debbie Benczkowski, the society’s chief operating officer.

According to experts, retention of staff working with dementia patients remains a challenge. One key to preventing future turnover in the field could be education.

“I was able to get additional training and it gave me confidence I could work effectively with that population,” said Zieber. “My vision is that we can provide similar education, supports and mentorship.”

Results of the study are expected in September 2014. You can follow its progress online at http://www.moraldistress.ca.