'Mum would never have done that': Care home consultant wants to change dialogue around dementia

Declining memory or not, people's needs and interests change over time. That's why one care home consultant wants relatives to treat their loved ones as people rather than as patients.

Daniella Greenwood wants relatives, staff to stop treating people with dementia as 'missing'

Dementia is a fatal, degenerative brain disease that eventually makes a person's ability to perform everyday tasks impossible. (Laurie Fagan)

Declining memory or not, people's needs and interests change over time.

That's why one care home consultant wants friends and relatives of people with dementia to treat their loved ones as people rather than as patients.  

"You can grab all of this wonderful life history but you can't resign people to it," says Daniella Greenwood, a consultant who works with care homes in Canada and Australia. "It is about making sure that we're open to who the person is becoming because the person is still there." 

Greenwood is speaking at Dementia Re-imagined: Continuing the Conversation, a free event Wednesday evening (July 10) at Mount Royal University. 

Rethinking the way society treats those with declining memories starts with how these people are defined, she says. 

People with dementia are often called dementia patients or sufferers, which Greenwood says "paints a very bleak picture." 

17,000 Calgarians have dementia 

"When people get diagnosed, they live the rest of their lives with dementia and often quite well," she says. 

Approximately 17,000 people in Calgary are living with Alzheimer's disease or related dementias, according to the Alzheimer Society of Calgary. And according to the organization, for each person diagnosed with dementia, between 10 to 12 individuals are directly impacted. 

Friends, relatives and care home staff often talk about a person with dementia having gone "missing," Greenwood says.

"Often you'll hear people say … 'mum would never have done that,'" she says. "If you really unpack that, it's saying that the person before us now isn't there and doesn't have the same rights as this person that I'm remembering from the past."

Greenwood says that from Day 1, health care workers who work with families should reinforce the idea that people with dementia will always have equal worth and value, despite their condition. 

People define "quality of life" in different ways. According to the Alzheimer Society of Canada, all those who participate in the lives of people with Alzheimer's disease or other dementias should understand that, despite changes and loss of abilities, people with the disease can still find pleasure and experience satisfaction.

Families and workers should also ensure they are making decisions in the presence of the patient, she says.

Care home culture shift 

Strict schedules in care homes are big barriers when it comes to implementing these practices, says Greenwood.

She spends two shifts on the floor when she's working with a care home and says she's found flexibility often goes out the window when activities like breakfast are only scheduled for half an hour at a specific time every morning. 

"What does that tell staff about the humanness, how the organization sees the humanness of people with dementia?" she says. 

Greenwood focuses on implementing workplace culture changes, focusing on staffing attitudes and consistent patient-staff relationships, in care homes. 

While she says there's turnover in care homes, she's found care workers find great value in their relationships with their patients — something that often comes up when she talks to staff about what they would change about their jobs. 

"If we can't change how much we pay, we can create systems that encourage those kind of bonds," Greenwood says. 

She says a small, stable team is what relatives should look for when searching for a care home. Her advice is to ask care homes how staff are scheduled.  

In Greenwood's research, she's found a "consistent team" can mean between 28 to 34 different workers see a patient over a 30-day period. Whereas, patients who have a "consistent assignment" see about five workers. 

Care workers can sense when something's wrong with a patient they work with regularly, she says, adding that's incredibly valuable since people with dementia can't always express how they are feeling.

With files from the Calgary Eyeopener.