When Tanya Doran began her master’s degree in nursing at Athabasca University, she didn’t anticipate she would learn how to improve the quality of life for people living with dementia.
“With the rise of dementia, there is a strong chance the disease will touch someone in each of our lives,” says Tanya. “I wanted to make a difference in how people are treated and how they’re experiencing their life with dementia.”
Most research labels people living with dementia as one singular group. While research sometimes reports gender, sex and age, other important factors including socioeconomic status, ethnicity and sexual orientation are often missed.
“All of those factors can influence what people identify as important for them in their quality of life,” says Tanya.
Researchers have developed scales and frameworks to measure quality of life, but with little involvement from individuals living with dementia. Even if people who have dementia are involved, their ideas are often not captured.
Tanya suggests we need to shift how we conduct research about the quality of life for people with dementia, and begin to recognize minority groups that might have a different perspective. She stresses the importance of critical social theory, which is the study of how people hold different levels of power and influence in society based on their gender, socioeconomic status, ethnicity and sexual orientation.
“We should embrace critical social theory perspective and find out what quality of life means to different groups of people with dementia,” she says. “We might uncover significant differences and similarities in how they conceptualize quality of life, and that may change how we care for people living with dementia.”
Reflect on our biases
Many people think of dementia as a limitation. We might attach stigma or stereotypes without a second thought.
“If I tell you to picture a person with dementia in China, what do you think of? Think about who you pictured. What was their gender, their ethnicity? Did you make assumptions about their social support system? Where were they living?” Tanya asks. “This can offer some insight into the unconscious biases you carry.”
Consider your own perspective on quality of life and how it’s
different from another person. We can benefit from looking at people
with dementia with more compassion and developing a deeper
understanding of their realities.
“It takes conscious self-reflection to notice the biases we carry. For example, we may look at a person with dementia and judge that they have limitations and a poor quality of life. You may rate their quality of life lower than they would rate it for themselves. That indicates we don’t know what it’s like for that person with dementia day to day,” says Tanya. “We all have a unique worldview and it’s difficult to imagine what life is like for someone else.”
Our responsibility as registered nurses is to make one-on-one connections with patients, rather than assuming broad concepts will apply to everyone.
“Next time you’re working with someone with dementia, initiate a discussion about their quality of life with the patient. It might be different from what we assume, and what research might tell us,” says Tanya.
Learn from people with dementia
“We need to look at individuals and recognize the differences among us,” says Tanya. “And not just look at them, but really value them.”
Tanya recalls a patient from her former role in long-term care. Despite having lost the ability to have a conversation, the patient would come to Tanya’s office, take her by the hand and go for a walk around the unit.
“She would talk to me, and though the words didn’t make sense, I would respond back pleasantly as if it we were having a perfectly normal discussion. It was very meaningful for her to have that social contact. It didn’t take long. We all have time to make connections and brighten someone’s day,” says Tanya.
Another patient taught Spanish words to Tanya, despite not knowing who Tanya was.
“We get so caught up thinking about responsibilities and planning that we forget to take some time for the little things that matter. Working with people with dementia teaches you to enjoy the moment,” says Tanya.
By Crystal Komanchuk