Persons with dementia are one of the most stigmatized groups in society. 51% of Canadians identified using stigmatizing language when talking about dementia.1 When community members hear the word dementia, many think of the end of life stages, the confusion, severe memory loss, and incompetence. However, this is not always the case. Dementia is a neurodegenerative progressive disease, meaning that it progresses over time, but that progression can range from person to person. It's important to keep this in mind and to challenge the stigma associated with dementia and help to educate others about what dementia looks like.
While many persons living with dementia might live in assisted living facilities, there are also many individuals who still reside in their homes in their communities. It's important to consider this - not everyone who is diagnosed with dementia immediately moves into assisted living. Many individuals continue to live at home, engage in community programs, and participate in activities that they always have.
Dementia is an invisible disease, people cannot always see it. And it is this invisibility that contributes to the stigma that many individuals face. Thus, while being a community member, you might not always see that a person is living with dementia, you might see their different behaviours or hear their repetitive words. It's essential to never make assumptions about a dementia diagnosis, but if you start to notice signs that could be dementia, engage with an individual in a similar manner that you always would, but perhaps provide them a bit more time to respond, prompt them if they need, and be understanding and patient. It is through these strategies that you can better support everyone living in the community, as well as people living with dementia.
As a person with dementia, care partner, care staff, relative, or friend, I encourage you when you hear someone within society using stigmatizing language when talking about dementia or someone living with it, to challenge their perspective. Ask them what they think dementia means and perhaps share a story of an experience with a person with dementia. While dementia is a challenging disease, it's important to consider that people living with dementia are still people, they have thoughts, feelings, and opinions and deserve to be treated fairly within society. So the next time you hear someone speak about a person with dementia as confused, helpless, or crazy, challenge their perspective and let them know that just because a person has dementia, this does not mean that it defines who they are as a person. Together, we can create communities that are more dementia friendly and continue to better support persons living with dementia.
1. Alzheimer Society of Canada. (March 7, 2019). Dementia numbers in Canada. Retrieved from https://alzheimer.ca/en/Home/About-dementia/What-is-dementia/Dementia-numbers