We are unprepared for dementia’s toll
This article appeared in the Toronto Star on March 18, 2023.
In the whoop-la of concern about replacement of hips and knees, diagnosis and treatment of cancer, rising tide of mental illness and addiction, pediatric care – all absolutely warranted -- the plight of people with dementia and their caregivers is the wallpaper on a crowded room. André Picard, in his 2021 book on senior care, says ‘contrary to common perceptions, more than half of people with dementia stay at home’.[1] A 2022 report by Alzheimer’s Society of Canada placed the number of people with dementia at 600,000, with an alarming up-tick coming as the big belly of boomers in the population curves into old age. The report cites StatsCan data that a person with dementia living in the community requires on average 26 hours of voluntary care per week. The report estimates the economic impact: it’s massive.[2]
These reports speak of those diagnosed with dementia. The quick-click protocol for diagnosing dementia, The Test -- the one everyone knows involves drawing a clock and other infantilizing idiocy -- misses years of the disease. My husband passed the test ‘with flying colours’ but couldn’t find his way to the car (two left turns, 50’ max) or remember how to call me on his cell phone; it took the significant skill of an experienced gerontologist to get the evidence she needed to make a diagnosis. This was three years before he died (with, but not of, dementia). I’d diagnosed him to my satisfaction twelve years prior to the medical system (reluctantly: ‘If you insist, but I don’t see anything…’) vindicating me.
But when I pore through journal entries dripping with confusion and despair about the man I loved becoming someone quite different and significantly less loveable, I see the fingerprints of dementia twenty-two years before he died. I understood the changes as the consequence of a go-round with cancer that sapped his energy and left him with largely invisible physical challenges. I leaned into helping him adjust. Eight years of domestic drama and no progress later, I realized his personality changes were dementia doing its thing. I made the decision to stay in the marriage and bridge, rather than rail against, the gaps in what he could no longer do. I consider the possibility that cancer and its treatment tipped him into early onset (early 50s) of a disease for which he had a genetic predisposition.
By dint of great effort and patience I didn’t know I had, our final fifteen years looked good from the outside and weren’t bad from the inside. He qualified for very few of the resources available to people living with dementia until the month before he died: the system does what it can – mostly supporting daily living skills – rather than what is needed. The job of keeping oneself as a caregiver in working order is a variation on the airlines instruction for the responsible person to don the oxygen mask first before fitting it on the dependent. Except no oxygen mask magically falls from above. Finding the means to survive in what is indisputably thining air as the disease progresses falls to the caregiver and those they recruit.
My husband departed this life before he exhausted my capabilities and became an expense to the medical and long-term care systems. I don’t think he would have become one of those angry residents who lashes out with his cane, but I don’t know: it’s an unpredictable disease. What I do know is that we are abysmally unprepared for the future that awaits. Lisa Raitt, whose husband was fit and strong and homicidal with early onset dementia, eventually scored one of twenty beds in Toronto that could manage his behaviour.[3]
Meantime, we live in terror of whether the brain changes that age brings are normal, whatever that means, or the dreaded death sentence of dementia. Because whether or not the body dies of dementia, what makes the person the person does die -- a prolonged, inexorable, stuttering death that is hard for everyone.
[1] André Picard, Neglected No More: the urgent need to improve the lives of Canada’s elders in the wake of a pandemic, p 79
[2] Navigating the Path Forward for Dementia in Canada: The Landmark Study Report #1
[3] https://www.tvo.org/video/caring-for-a-loved-one-with-early-onset-alzheimers
