See Me, Not my Disease

Combating the stigma of dementia

Photo of a woman holding a laptop
Dementia is a progressive disease. A diagnosis doesn’t mean a person has to stop her daily routine or give up working right away.

Imagine for a moment that your family and friends have recently been told you have dementia. Your friend John calls your home. You answer, and after an awkward exchange of greetings, John, who would normally have been happy to chat with you, asks to speak to your husband instead. You are hurt, and confused about what this means. Does John no longer see you as a real person?

In a poll conducted by Alzheimer’s Disease International, 40 per cent of people with dementia reported they had been avoided or treated differently after diagnosis. It’s no surprise, then, that one in four respondents cited stigma as a reason to conceal their diagnosis.

The Alzheimer Society has launched a nation-wide campaign to address myths about dementia, shift attitudes and make it easier to talk about the illness so that people can get the help they need. Dementia is more than having the occasional “’senior moment” or losing your keys. It’s a progressive degenerative brain disorder that affects each person differently. It’s fatal and there is no cure.

Here are six ways you can help combat the stigma:

  • Learn the facts. Share your knowledge about dementia with others, including family and friends, especially if you hear something that isn’t true. Talking about dementia lessens our fear and increases understanding.
  • Don’t make assumptions. Dementia is a progressive disease and affects each person differently. A diagnosis doesn’t mean the person will have to stop her daily routine or give up working right away.
  • Watch your language. Do you use statements like “she’s losing her marbles,” or “he has old-timer’s disease?” Don’t make light of dementia. We don’t tolerate racial jokes, yet dementia jokes are common.
  • Treat people with dementia with respect and dignity. A person’s ability to do things we take for granted will change as the illness progresses. But no matter what stage of the illness, she’s still the person she always was, with unique abilities and needs. Appreciate who she is. Don’t talk around her or avoid her at family and social gatherings.
  • Be a friend. People with dementia don’t want to lose their friends nor do they want to stop doing activities they enjoy. Be supportive. Stay in touch and connected. Social activity helps slow progression and lets people with dementia know you care.
  • Speak up! Don’t stand for media stereotypes that perpetuate stigma and myths. Call or write your local radio or television station or newspaper. Media is a powerful force in affecting how we act and think.

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