Photo by Gemma Evans on Unsplash

You might think you know what to expect when you hear the word “dementia,” and then – when you’re confronted with it in real life – you realize how little you knew.

This disease turned my parents’ world upside down and, for awhile, mine too. While caring for them, I’ve learned that no two dementia diagnoses or prognoses are alike, and that there are many subtypes and a variety of symptoms. And finally, most importantly, I learned that dementia can sneak up on you if you don’t pay attention.

dementia can sneak up on you if you don’t pay attention

In 2015, dementia took centre stage in my family. It started in January, when my 85-year-old father was hospitalized after falling and suffering a brain injury. This seemingly had triggered or worsened already existing dementia.

Soon after, my parents’ neighbour contacted me, urging me to come home to New Brunswick to help (I live in Toronto). When I got there, I realized that not only could Mom no longer use the phone; she also could not figure out how to do other straightforward tasks, such as buying groceries or cooking.

Within a matter of days, I knew that my father would not be coming home and that my mother could never cope on her own. Dealing with practical matters – sorting through financial documents, getting powers of attorney in place, arranging a dementia assessment for my 80-year-old mother – was a priority. I tried not to cry in front of strangers, but sometimes the tears slipped through anyway.

The many faces of dementia

Dementia is not the easiest disease to diagnose, partly because some people, like my mother, can mask their condition: her grooming was impeccable, and she could carry on an intelligent, meaningful conversation. Yet, during my last few vacations at home I noticed Mom sometimes asked the same questions over and over, something I now know is a classic symptom of Alzheimer’s. (Once when cooking breakfast 18 months earlier she asked me four times how I wanted my eggs.)

Alzheimer’s is the most common form of dementia, accounting for an estimated 60 to 80 percent of cases, but there are many other subtypes of dementia and a variety of symptoms. Indeed, as the Alzheimer’s Society of Canada points out, dementia isn’t a specific disease; rather, it describes a group of symptoms affecting memory, thinking and social abilities severely enough to interfere with daily functioning. One of the main symptoms, forgetfulness, can resemble the short-term memory loss typical of aging.

dementia isn’t a specific disease; it’s a group of symptoms affecting memory, thinking and social abilities

My father’s dementia played out differently than Mom’s. It progressed far more rapidly, changing his personality and affecting his physical as well as cognitive abilities. He was diagnosed with mixed Alzheimer’s and vascular dementia, but I suspect he also had Lewy body dementia (LBD), which is associated with hallucinations and psychiatric disturbances.

While hospitalized, my father – a former university administrator – was often delusional, believing he ran the hospital and that the nurses and orderlies were his employees. Although he was sometimes agitated during this phase of his illness, he had moments when he was sweeter and less inhibited, and I enjoyed listening to him talk about his “workday.”

My parents were in their 80s when they were diagnosed with dementia, but it is estimated that two to eight percent of people with dementia are under 65. Caring for them often falls to their children, who may be in their 30s or younger, like my 32-year-old friend Karen. At an age when most people are focusing on their kids and their career, Karen travels weekly from Toronto to Belleville, Ontario to spend time with her dad, who developed dementia in his early 60s. The recently released documentary Much Too Young follows four caregivers between 13 and 27 and shows the reality of caring for a parent with early-onset Alzheimer’s.

It takes a village

Dealing with dementia is not easy, especially if you are a long-distance caregiver. Although I lacked close relatives in New Brunswick, I was able to get help from my parents’ friends and neighbours. They took Mom to appointments and made her dinner and, after she had moved to assisted living, kept an eye on the house when it was on the market. I didn’t join an Alzheimer Society Caregiver Support Group, but I was part of an informal support group in which four of the other six members have dementia caregiving experience. When I felt overwhelmed, I often called on Rosemary, who provided practical advice as well as emotional support.

Rosemary and others also encouraged me to take care of myself. In between looking after my parents’ finances, arranging medical care or travelling to New Brunswick, I squeezed in meditation, exercise, eight hours of sleep (most nights) and – occasionally – some fun.

Hands down, 2015 was a demanding year, one in which I learned a lot about the fascinating, often devastating, disease of dementia. Chief of all I learned this: It is far better to deal with dementia head on than to deny its existence until a crisis erupts.

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Katherine O'Brien
Katherine O'Brien is a freelance content writer and editor from Toronto who specializes in seniors' health, senior care and aging. Using her own caregiving experience as a starting point, Katherine aims to educate and inform older adults and their families about ways to make the aging process as smooth and enjoyable as possible. She's covered a wide range of topics including dementia, seniors' nutrition, advance care planning and emotional wellness.