29 Jan The Stigma Around Alzheimer’s
When you think of stigmas related to health conditions, what are some of the first ones that come to mind – perhaps they are related to obesity? Maybe smoking? One that might not come to mind initially is Alzheimer’s disease.
Emma McKay understands this stigma first hand. Her mother was diagnosed with early onset Alzheimer’s disease, and Emma and her family are caregivers. Emma shared with us that “the most fundamental and common way Alzheimer’s disease is trivialized is through the “old age” stereotype. Memory loss is one of the most common characteristics that we as a society associate with getting old, and so Alzheimer’s is often looped into a category of diminished significance because of this. I think the stigma can be even more evident when you are dealing with early-onset Alzheimer’s, because the patients’ themselves look young and completely normal at first glance.”
As we continue to uncover more about the complexities of the brain and Alzheimer’s disease, we are also learning more about the challenges that a person with Alzheimer’s disease and their loved ones encounter on a day-to-day basis.
Emma and her family are all too familiar with these challenges and how they can have a significant impact on one’s family and own approach to life – “Caring for someone with Alzheimer’s Disease will change you profoundly. As a family, I think we have all become more patient, more thoughtful and more loving through this experience. Caring for our Mom together is inevitably one of the hardest things we will ever do, but it has brought us closer together, made us appreciate every little victory and made us better people.”
One major challenge is the general lack of understanding about dementia, which often results in misconceptions about the individual living with the disease, as well as the perpetuation of misinformation, stereotypes and the stigma itself. Emma emphasizes how a lack of understanding leads to a stigma. “Neurological conditions, and anything associated with mental health or cognitive ability, for that matter, have always had a stigma surrounding them. People are afraid of what they don’t understand, and absolutely no one understands Alzheimer’s.”
Individuals living with dementia often feel isolated because of the stigma that accompanies this health condition. The possibility of negative reactions to the psychological or behavioural symptoms that Alzheimer’s patients often exhibit is all too real. Emma shares her experience as a caregiver with some of the negative reactions she has seen to her mother’s disease. “People love to stare! Of course, most 23 year olds don’t walk around holding their Mother’s hand, putting on their coat or helping them eat. Conversely, most 56 year olds are completely independent and self-sustaining, so I understand why the picture itself seems odd.”
Unfortunately, the societal stigma that often surrounds Alzheimer’s disease may not only influence an individual’s decision to disclose their diagnosis of dementia, but also their eligibility to access certain types of health care services.
So what’s the solution? Emma offered this simple advice: “be kind, for everyone you meet is fighting a battle you know nothing about.”
With the start of the New Year, let’s open our minds, be a little more kind to others, and help to decrease the stigma around Alzheimer’s disease. To learn more about the stigma around dementia, check out this great article from Healthy Debate: http://bit.ly/1Kcb2Km.