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Talk about it
Okay, I’ll say it out loud (or at least in print), some diseases just don’t get any respect. Now, before you decide that I’m one callous witch, hear me out. If a person has cancer, just about any kind, the whole world wants to talk about it. We’ll run for a cure, bike for a cure, walk for a cure, have tea for a cure and cut off our ponytails for a cure. We aren’t afraid to talk about cancer. Respect and good press is what cancer gets, except if a man has breast cancer. That’s a tough sell. But, generally speaking, it’s okay to talk about cancer. Of course, it isn’t okay to have cancer, but don’t be afraid to talk about it. Lung cancer, skin cancer, breast cancer (except for guys with it), brain cancer, prostate cancer, cervical cancer, uterine cancer—well, you get the idea. And there’s a whole list of other diseases we can talk about without being embarrassed or resorting to euphemisms or whispering.
So, let’s not talk about Alzheimer’s or dementia if someone we know and love has it. Nope. Let’s whisper about it—but only with close friends or family. In fact, just to lighten the atmosphere, let’s call it “old timers” or say, “Mom/Dad isn’t all with it these days” and then giggle a bit. Let’s pretend a person (maybe it’s you) doesn’t have Alzheimer’s and dementia until the symptoms become obvious. Let’s do that. Keep it a secret because it’s embarrassing to have a disease that robs a person of their ability to communicate or to function or express emotions or take care of themselves. Above all else, if we happen to be a caregiver, let’s not tell the patient/victim that he or she has Alzheimer’s disease and dementia. There. Problem solved. Swept under the carpet, so to speak. Alzheimer’s and dementia are widely feared. People, like you and me, are likely more concerned about developing either than we are about cancer or heart disease or a host of other debilitating conditions. It is a taboo subject and we are squeamishly uncomfortable talking about it.
The overall impact of the stigma surrounding Alzheimer’s and dementia—our concern about how others will respond to the news of a diagnosis of dementia and Alzheimer’s—could deprive a person of the support they will need from their family, friends and healthcare professionals. Indeed, denial could lead to misunderstanding of behavioural changes and cause a delay in seeking the healthcare assistance available. If people don’t understand or know about the diagnosis, relationships suffer, self-esteem is impacted and sense of place in the community is lowered. The stigma could also lead to a question of inclusion of victims in everyday activities. We shy away from, and isolate, people who suffer with Alzheimer’s or dementia. Ignorance makes us comfortable with someone who doesn’t look ill but acts differently. My late mother suffered a brain injury and dementia was the simple outcome of that situation. I have to admit, sometimes it was a challenge to be out and about with Mom. We endured a lot of staring, comments about her behaviour and unsolicited advice about how to keep Mom quiet or how to correct her behaviour, quickly.
For some reason, we are equipped to deal with lots of diseases, but we’re not too good at behavioural differences. We tend to put people with Alzheimer’s or dementia into the “other” category. We assume that people with Alzheimer’s or dementia will not be able to enjoy or benefit from life’s experiences and events. Yeah, yeah, lots of people walk for Alzheimer’s and dementia, but we aren’t prepared to adjust our attitude about a disease and its symptoms that don’t meet our social norms. Alzheimer’s and dementia make us feel vulnerable and uncomfortable. They test relationships— and when that happens, quality of life diminishes. Let’s try to give the disease and the symptoms the respect they deserve. Let’s not withdraw from our friends and/or family who may need us to accept them and understand the condition. Let’s not be shy. Let’s talk about Alzheimer’s and dementia.
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