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Challenging Dementia Stigma
Dementia stigma is negative or discriminatory beliefs about people living with dementia based on their disease. Stigma can be caused by many different factors including a lack of knowledge or misinformation about dementia, fear, stereotypes and lack of positive representation, and communication challenges. Dementia is a largely invisible disease. Often, when we look at someone with dementia, we have no idea what’s going on under the surface. It’s easy to make assumptions.
Common myths that increase stigma about dementia include:
- People with dementia can’t understand what’s going on around them.
- People with dementia have bad or no quality of life.
- People with dementia are incapable and helpless.
- People with dementia are always suffering.
Stigma against people living with dementia can have high costs, including negative mental and physical health outcomes. A 2018 study by Shana D. Stites, PsyD and Jason Karlawish, MD found that higher levels of stigma were associated with decreased help-seeking behavior and higher levels of anxiety, depression, and behavioral symptoms. Social stigma, which is how others treat people with dementia, can lead to people with dementia and their caregivers withdrawing from social life and becoming more physically and emotionally isolated. While the effects of stigma can be devastating, there are changes we can make to reduce stigma including:
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Change our language. One way to challenge stigma is to be mindful of the words we use when talking about dementia or people living with dementia.
- Avoid hurtful language like “demented,” “senile,” or “crazy” or phrases like “they’re losing it.” Instead use person-centered language such as “person with / living with dementia.”
- Avoid disparaging language like, they’re “not all there” or they’re “fading away.” As dementia progresses, people lose many abilities but continue to retain certain strengths and skills.
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Avoid blaming. People with dementia cannot control their disease. Tasks that once came easily to them may now be difficult or impossible. They may require longer processing time before answering a question or may struggle to control their emotions. When someone is acting in a way you don’t understand or find challenging, consider what the cause behind the behavior might be rather than accusing the person of being difficult. Some factors to consider are:
- Physical well-being, like hunger, tiredness, and pain
- Emotional well-being, like anxiety, depression, and fear
- Environment, like time of day, location, and their comfort level with the person assisting.
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Foster inclusion. People with dementia, like everyone else, want to feel like they matter and have purpose. Those with dementia can still participate in life, even if the way they participate may look different than before. Ways to foster inclusion and challenge stigma include:
- Doing 'with' and not doing 'for'. Offer support instead of assuming someone cannot do something.
- Engage them in activities that foster their strengths and adapt activities they struggle with.
- Include the person in conversations, speak directly to them, and make eye contact.
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Learn the facts and listen to people with dementia. Much misinformation exists in the world about dementia, yet many resources exist to increase your knowledge.
- For those living in Northern Virginia with dementia or caring for someone with dementia, you can reach out to the RAFT Dementia Support Program.
- You can also check out the RAFT Dementia Program’s YouTube channel where you can watch video playlists addressing some of the common concerns and challenging behaviors experienced by people with dementia.
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