Compassion must be at the core of any strategy
By 2025 there will be three times as many people living with dementia than in 2015
My father died from Alzheimer’s disease. I thought about opening with a lighthearted story of one of the many instances when the disease took hold; like how he told the same story over and over again; or how he went for a walk with the dog one day, got lost, and came back with the police. For an added twist, he had never walked the dog in his life and why he chose to do so on that particular day remained a mystery. But I thought I’d just say it: my father died from Alzheimer’s disease.
The disease didn’t make my father belligerent or angry, well, except for the episodes with the jacket. For the most part, he was quiet and confused, seemingly content to have someone to sit with, who would listen when he spoke. It was during the early stages of the disease, prediagnosis even, when the challenges around cognition produced anger and he lashed out unreasonably against the one closest to him, my mother. Her experience as a nurse working with geriatric patients clued her in to the more profound problem of which my father’s angry outbursts were merely a symptom. She knew he wasn’t well, but that didn’t make his “losing it” episodes any less frightening.
We were able to keep my father at home until we thought he’d be safer in a care facility. We picked one close to my house, so I could check on him daily. He died within months. I often wonder about those last months, if that was the right thing to do. His last lucid moment came after his first week in care when he asked me who was going to carry him to the hole. Our eyes locked and I knew he knew me one last time. I also knew he knew it was his time. He stopped eating and slowly faded away. My biggest regret is that he didn’t die in his bed with his dog at his side.
As a family, we did the best we could. We kept him home until his needs became more than we were qualified to manage. We felt he would get better care with constant supervision by trained staff. It wasn’t the best scenario, but it was the one we chose.
It wasn’t long after my father died that there was a knock at my door. A neighbour from down the street was standing there with an elderly man who had a name tag on that said “Tony.” My neighbour said he found this man wandering and could only make out numbers in their conversation, numbers which he thought might pertain to my house. I said no. We called the police and they came and carried him away in their cruiser. It turned out that he had wandered away from a care facility earlier in the day, a care facility clear across town. It was amazing he walked that far, but it happens all the time, from private homes and care facilities.
By all accounts from demographers and epidemiologists, we are in line for a “silver tsunami,” a huge wave of people, all those baby boomers, who are now aging and elderly, who will be living with a brain disease, of which Alzheimer’s is just one.
Dementia is a broad umbrella of brain disorders that affect cognition. The changing paradigm of cognitive function and dementia mean that people can live, potentially, for decades with cognitive impairment. And what is clear is that we are not prepared, individually as families, nor collectively as a society to address the needs of our cognitively impaired loved ones.
Internationally, it is estimated that by 2025, less that 10 years away, there will be three times as many people living with dementia than there were in 2015. Are we prepared for this? How will we manage to care for people with cognitive impairment?
The Ontario government has committed $100 million over the next three years to develop an Ontario Dementia Strategy along with $20 million for respite care. That’s a lot of money to just come up with a plan, but without one, we will be unprepared for the wave that will wash over and swamp the health care system and families struggling to cope while their loved ones decline.
My family was fortunate, in a way. We were able to keep my father at home for as long as possible with the help of everyone in the family. Could it have been better? Absolutely. Hopefully, the consultations and resulting recommendations will contribute to a strategy that satisfies the needs of Ontarians living with cognitive impairment and their families, with compassion and care at its core.