In the next 24 hours, 10 more people in Saskatchewan will develop dementia. Three out of four people already know someone living with the diagnosis. What those numbers tell us is that many will encounter someone with dementia in the course of their day, so developing understanding and awareness is crucial not just for the individual and their families, but for the communities we all call home.
That was the focus of a presentation called “The ABC’s of Dementia” held last week at the Outlook Branch Library, organized by a local group committed to Building Dementia Friendly Communities. Presenter Abby Wolfe, Public Awareness Coordinator for Alzheimer Society of Saskatchewan, was a wealth of information for the 35 people in attendance. “One of the most rewarding parts of doing presentations like these,” Wolfe said, “is doing a little bit to help people learn more and live well.”
Wolfe provided definitions and explanations, and dispelled myths and misconceptions, as she addressed how abilities, behaviors and communication are impacted by dementia, as well as drawing attention to the importance of early diagnosis so individuals and families can get connected to support and information, and make informed plans for the future.
Dementia is not a specific disease but rather an umbrella term to describe a set of symptoms that include changes in cognition, memory, behavior or personality. Alzheimer’s disease is statistically the most common type of dementia, but other diagnoses can include Frontotemporal dementia, Vascular dementia, Lewy Body dementia, and mixed dementia which refers to a situation where multiple types of dementia are being experienced at the same time.
Each type affects the brain in different ways and this is why Wolfe stresses the importance of early diagnosis. “We encourage people to access a specific diagnosis as early as possible to help them understand what the progress of that type might be,” she explained.
According to 2019 data, the Alzheimer’s Society of Saskatchewan provided support in 269 different communities to 2,550 individuals; and that is just those who have sought out a diagnosis.
Wolfe reiterated the message throughout the evening that dementia is not a normal part of aging so if someone is exhibiting changes in abilities, communication and behavior, diagnosis is key. She cautions though, getting that diagnosis can take time since it involves ruling out treatable conditions, reviewing overall health history, and discussing the symptoms someone is experiencing. “It’s a process,” Wolfe explained. “There is no one test to determine that someone has dementia. It can take time and be difficult but there is great value in a specific diagnosis to learn more and understand the changes that are occurring.” She also encourages having a trusted person along to share with medical professionals what they are recognizing as noticeable changes. A gentleman in attendance Tuesday night shared his experience having a geriatric assessment completed on his mother. Although it looked like she was passing tests with flying colors, he was able to provide correct information that helped get a proper diagnosis.
Much more research is needed into risk factors, as well as how age, gender and genetics might interconnect, but Wolfe told the audience that what is good for the heart is good for the brain and that includes physical activity, a healthy diet, adequate sleep, good hydration and social activity. It is that social component that the local Building Dementia Friendly Communities is hoping to help with. “Social isolation can increase our risk of developing a dementia,” Wolfe stated, “or it can result in a faster rate of cognitive decline.” That is where the entire community can play a role.
“Becoming a more dementia friendly community is an ongoing process,” Wolfe explained. “It is continuing to look for ways to become more supportive, inclusive and accessible for those who are experiencing these changes. It’s helping people live in their communities for as long as possible and to the fullest extent possible.”
To illustrate what occurs as cognitive losses progress, Wolfe referred to the work of Dr. Jenny Basran, Saskatchewan’s only geriatrician. Basran uses the image of a melting ice cube and says memories from long ago, core memories that are formed when we are young, are like the inside of an ice cube. They are things we can hold on to and are at the core of the cube. More recent information is like the outside of the ice cube. It tends to melt first and as it melts it makes it more difficult for any new information to stick.
But what’s important to keep in mind is that those with dementia are at various stages of progression. Wolfe shared the reflection of one individual living with the disease who says the biggest barrier in their community is that people make no differential of where you’re at on the continuum, and just assume you are at the end stage. That individual was in the early stages of dementia, still wanting and able to contribute to the community. “That experience speaks to me that we need to emphasize that changes can be experienced very differently,” Wolfe said.
By increasing the knowledge base a community has it hopefully makes those dealing with the disease more open to talking about what supports they might need. The Alzheimer Society runs a MASH (Medical Alert Safely Home) program that provides wearable emblems indicating a cognitive impairment. “But this only works,” Wolfe added, “if there are individuals in the community who may recognize when someone may be lost and needs assistance.”
Of the 20,000 people in Saskatchewan who have dementia, 60% live in their own homes. This is why it is so important that communities look at what they can do to help each one live well. “The path to becoming more dementia friendly always starts with awareness,” Wolfe indicated, “because we can’t build understanding unless we have recognition of what someone is experiencing. The ability of neighbors and community members to respond in supportive ways will give confidence to those asking for help.”
Suggestions to become more supportive include introducing yourself each time you speak to someone with dementia, using familiar routines and patterns, breaking down tasks and giving small pieces of information at a time, as well as refraining from jokes about memory loss. Develop signage with simple text, and avoid symbols or abstract images that can lead to confusion. It is also important to understand that as someone loses language or an ability it is best to connect—not correct. “Don’t tell them they should know what the word is or that they should remember what you talked about the day before,” Wolfe encouraged. “Connect with what they are saying.”
Continued learning is key and a good way to do that is to become a Dementia Friend by visiting www.dementiafriendlysaskatchewan.ca to learn more. There is also a Dementia Helpline at 1-877-949-4141 that can be accessed by anyone for support and information.
“We all have a role in our everyday interactions to think about how we can be understanding and how we can welcome people and help them continue to be engaged in the community,” Wolfe stated. “Supporting their abilities is so important.”
Leah Larson says this is just the beginning of the work the local dementia friendly group is hoping to undertake. “We have plans of getting more information out to our businesses and service groups and sharing where we can. We hope our community can embrace all the information and be accepting and compassionate and make this the best place to live.”