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When I was in fifth grade, my eighty year-old grandfather was moved into a nursing home because growing symptoms of Alzheimer’s disease became too severe for him to stay at home. For the last several years of his life, my relationship with my grandfather was accompanied by a conflicting curiosity regarding his illness, and a desire to avoid him because I could not understand the strange things that the disease seemed to propel him to do. What had started as misplaced keys and forgotten names eventually turned into random acts such as attempting to pour juice onto plates instead of cups. As a young girl, the curious side of me was more present. My grandfather’s illness gave him an aura of bizarre mystery – one that I attempted to understand instead of trying to ignore. At a certain point, as I grew from a child into a preteen, the unpredictability of his disease ceased to be something that I wondered at but accepted as another part of him. Instead, it turned into an aspect of him that I sought to define, but couldn’t, and that made me uncomfortable.
After a few years, the disease attacked my grandfather’s speech abilities. Slowly but surely, he lost English and ended up reverting back to Spanish, his mother tongue. I loved my grandfather but a wall of apprehension had built itself between him and I because I could not understand the changes taking place in his mind. He wasn’t the person that I used to know. I constantly felt the urge to finish his sentences for him, wanting to bring him back to the same mental level as me. It took me a while to realize that this was unfair to him, because he wasn’t on the same mental level anymore. My grandfather’s mind was changing, and instead of constantly trying to wade through the disease to find the person that he used to be, I had to learn to accept him for who he was at that moment.
My grandfather was one out of the estimated 747,000 Canadians living with Alzheimer’s or a related dementia. This widespread disease deserves widespread understanding which is why this year January has been marked as Alzheimer Awareness month in Canada. My experience with my grandfather’s disease is not an isolated one. This is why the Alzheimer Society Canada (ASC) has launched a nation-wide campaign called, “See me, not my disease. Let’s talk about dementia.” also occurring this month.
According to the ASC website, “Alzheimer’s disease is a fatal, progressive and degenerative disease that destroys brain cells. It is the most common form of dementia, accounting for 64 per cent of all dementias in Canada.” Apart from the medical effects caused by Alzheimer’s disease, one of the major struggles facing those diagnosed, is living with the stigma associated with the disease. Therefore, the main goal of the ASC campaign is to address many of the myths and stigmas surrounding Alzheimer’s disease.
Here are a few examples of the most common myths that people often mistake for truths regarding Alzheimer’s disease:
Myth 1: Because someone in my family has Alzheimer’s disease, I’m going to get it.
Reality: Family history can play a role in the disease. However, in only a very small percentage of cases is the cause connected to genes.
Myth 2: Alzheimer’s disease is an old person’s disease.
Reality: While age is the most significant contributor to Alzheimer’s, the majority of people do not develop this disease, as they age.
Myth 3: There is a cure for Alzheimer’s disease.
Reality: While there is no known cure for Alzheimer’s, there are medications that can help lessen the symptoms. Also, many drugs are currently being explored that can potentially act against the disease process.
Myth 4: If I’m diagnosed with Alzheimer’s disease, my life is over.
Reality: People with the disease can, and do still live meaningful lives. Services, support and activities tailored to the needs of people who have Alzheimer’s can help enrich their quality of life.
Myth 5: All people with Alzheimer’s disease become violent and aggressive.
Reality: While the memory loss and resulting confusion can be extremely frustrating for those diagnosed with Alzheimer’s disease, everyone reacts differently and it is impossible to apply stereotypes to those affected.
As for the stigma associated with Alzheimer’s disease, an online survey conducted by Alzheimer’s Disease International in 2012, found that 40 percent of people living with some form of dementia, such as Alzheimer’s, reported that upon being diagnosed, they were treated negatively, experienced isolation, and experienced loss of friends.
In other words, Alzheimer’s disease tends to carry a stigma because it provokes the fear of the unknown. It is hard to understand someone that we cannot directly relate to, and therefore when people are faced with a person who has Alzheimer’s, they often choose to compartmentalize that person as someone who is simply beyond understanding. This is what has sparked the plea of the ASC’s campaign: Do not define people suffering from Alzheimer’s disease by their illness. Recognize the illness but ultimately see the affected person as a human being, regardless of it.
When my grandfather passed, his vocabulary had dwindled down to five or six words, and he no longer recognized anyone in our family. However, one day when I went to visit him with my grandmother, he started to cry when we entered the room –tears of frustration and happiness– and I knew that even if my grandfather could not identify exactly who my grandma was, deep down he knew she was special to him.
That specific memory is the reason why, when my editor asked who wanted to write an article about Alzheimer’s Awareness Month, my hand shot into the air as an offer. Alzheimer’s takes enough from the people who suffer from it. Give back some respect, and increase your understanding and awareness of this disease.
For more information, visit:
http://www.alzheimer.ca/en/AW13-home
Photo Credit:
http://www.facebook.com/AlzheimerSociety