Written By Donna Costa, The London Writers Society (LWS)
Bev, at age 79, lived independently in her own condo and happily drove her zippy red Kia to meet friends at Tim Hortons for afternoon coffee or to her favourite roadhouse for dinner. Overtime, though, her friends began to notice subtle changes—she seemed more forgetful, grew anxious when her routine shifted, became confused during her weekly euchre games, and gradually withdrew from the crafts and hobbies she once loved.
Bev was my mother. And when she was diagnosed with Alzheimer’s, she became one of almost 750,000 people living with dementia in Canada. Globally, someone is diagnosed with dementia every three seconds, the most common form being Alzheimer’s. The disease is also more prevalent in women than men—one in six women, one in eleven men. Additionally, people living with dementia face stigma, such as being ignored, being taken advantage of, and having difficulty accessing appropriate services or support.
Alzheimer’s originates in the hippocampus, the brain’s centre for memory and learning. As the disease progresses, Alzheimer’s affects areas of the brain responsible for language, reasoning, and social behaviour. Over time, communication to other parts of the body is also lost. The Five A’s of Alzheimer’s are Amnesia (memory loss), Apraxia (loss of voluntary motor skills), Agnosia (inability to recognize faces, objects, voices or places), Anomia (inability to identify everyday objects) and Aphasia (impaired speech or inability to swallow).
Alzheimer’s is not a natural result of aging. It is a preventable disease. But negative changes in the brain occur 20 to 30 years before symptoms begin to appear, so prevention—diet, exercise, control of vascular risk factors, cognitively stimulating activities, and social engagement—must start early to delay onset, reduce symptoms, or slow progression.
In a 2017 study known as ASASES—Alzheimer Society Awareness Survey Executive Summary, over half the respondents expressed worry about developing Alzheimer’s. Their concerns included being a burden to others, loss of independence, and an inability to recognize family or friends. Half of the respondents also said they would feel ashamed or embarrassed with a dementia diagnosis. One in five would avoid seeking help for as long as possible, and up to two-thirds said they would feel uncomfortable disclosing a diagnosis to family, friends, coworkers, or acquaintances.
According to the study, one in five Canadians has experience caring for someone with some form of dementia. As my mom’s primary caregiver, I became the “one in five.” In the early stages, I made the 90-minute drive to her condo weekly—often overnighting in winter weather—to assist with grocery shopping, banking, and activities about town since her driver’s license was revoked upon her diagnosis. When her abilities decreased further, it was no longer safe for her to live alone. She moved in with my husband and me, dog in tow, for the rest of her years.
As a full-time caregiver, I learned that, just like people with Alzheimer’s, caregivers experience stigmas: being ignored, dismissed, and socially avoided by others. Small wonder that the ASASES study found that almost 90 percent of caregivers wished that more people understood the realities of caring for someone with dementia.
Over time, Mom lost her ability to walk unassisted. Eventually, she required a wheelchair, then a lift. She sometimes forgot the purpose of a fork, choosing to use her fingers instead. Now and then, her body forgot how to swallow. And if she occasionally called me by the dog’s name, I knew from the look in her eyes that she still understood I was her daughter and that, in her heart, she loved me, just as I loved her.
In Canada, Alzheimer’s Awareness Month is observed in January.
