In order to break down the stigma around dementia, people need to understand the disease is about more than just memory loss, according to the Alzheimer Society of Saskatchewan.
Abby Wolfe, a public awareness co-ordinator with the society, recently listened to patients suffering from the illness as part of a series of focus groups aimed at making the province a more dementia-friendly place to live.
She heard from many participants who expressed frustration and embarrassment when it comes to talking about their illness.
"It was difficult for them to open up about their diagnosis and to want to talk about that because they weren't exactly sure how people were going to react," she told CBC Radio's The Morning Edition.
Wolfe explained that increasing awareness that dementia impacts more parts of a person's brain than just their memory is one of the recommendations the society took away from the focus groups.
'You lose your social cues'
Roxanne Varey was recently diagnosed with frontal lobe dementia, which results in behaviour and language changes.
The 55-year-old woman already suffers from early onset Alzheimer's and is now concerned about what this latest development means for her life.
"You lose your social cues," she explained.
"I could be inappropriate and that concerns me because, you know, I could embarrass myself."
Varey points to other cases where sufferers have, for example, exhibited inappropriate sexual behaviour or eaten off the plates of other people.
For now, she's focused on maintaining her dignity and calls on people to be more supportive and accepting of her situation, and the situations of others with the disease.
10 warning signs for dementia
Wolfe said people need to know there are 10 warning signs for dementia.
In order to convey that message to health providers and the general public, the society has launched an awareness campaign and will host a series of information sessions that focus on the ABCs of what the disease impacts — abilities, behaviour and communication.
Another recommendation that came from the society's focus groups was to make physical environments, both indoors and outdoors, easier for people with dementia to navigate, Wolfe explained.
As an example, she said a bathroom sign could be redesigned to illustrate clearer instructions that someone experiencing abstract thinking could more easily understand.
"Not using a highly-stylized silhouette of a person to indicate which is the men's bathrooms and which is the women's, making sure that it actually has maybe a toilet on that sign," is an example of a needed change, she said.
The 10 warning signs of Alzheimer's disease, according to the Alzheimer Society of Saskatchewan, are:
- Memory loss affecting day-to-day abilities.
- Difficulty performing familiar tasks — forgetting how to do something you've been doing your whole life, such as preparing a meal or getting dressed.
- Problems with language — forgetting words or substituting words that don't fit the context.
- Disorientation in time and space — not knowing what day of the week it is or getting lost in a familiar place.
- Impaired judgment — not recognizing a medical problem that needs attention or wearing light clothing on a cold day.
- Problems with abstract thinking — not understanding what numbers signify on a calculator, for example, or how they're used.
- Misplacing things — putting things in strange places, like an iron in the freezer or a wristwatch in the sugar bowl.
- Changes in mood and behaviour — exhibiting severe mood swings from being easy-going to quick-tempered.
- Changes in personality — behaving out of character such as feeling paranoid or threatened.
- Loss of initiative — losing interest in friends, family and favourite activities.