A call for more home supports

TAUREEF MOHAMMED

“SO, I AM not going back home?” the patient asked.

“I’m sorry, but we don’t think it’s safe,” the doctor said.

At this point, the patient, a woman in her 70s, newly diagnosed with dementia, looked down. In front of her, a simple meal on a plastic tray. On her wrist, a light blue ID band with a barcode, her hospital fingerprint.

And when she looked up and around, the view must have been just as depressing: the plain, white walls; the whiteboard with the date and her nurse’s name; the blinding, white lights; the white bedsheets. Bland and colourless!

Her delirium – an acute, reversible state of confusion, which, in her case, was caused by extremely high blood pressures, the consequence of her forgetting to take her blood pressure medications – had cleared, and she was now able to make some sense of reality.

And despite having dementia, her perception of reality was correct: she was in a hospital, an institution, and she was not going to return home. She could not remember the date, her medications, or how to prepare a meal, but she could still remember her suburban Ontario home. And, I figured, it was this memory and the contrast between it and the impersonal hospital ward that led to the despair on her face – she understood, fully, that she was in a crisis.

I never saw this patient again. In Canada, though, it was not difficult to imagine her journey and destination. A family meeting would have been called to decide on the next steps. The patient, her family, the medical team, and a social worker would have attended.

The medical team would have explained the diagnosis of dementia, the progression of the disease, and advised that she should not be left alone without adequate support – it was too risky.

The family would have explained what they were capable of doing, and this would have depended on how many of them were available and how much money they had. Some families are able to move mountains; others are already living on the edge of the mountain, and providing 24-hour monitoring to a relative with dementia would just push them over the edge.

The social worker would have explained what the private and public sectors in Ontario could offer. A combination of private and public home-care services may allow the person to continue living at home. The publicly-funded home services wouldn’t have been enough; the privately-funded ones, unaffordable. A posh, privately run dementia-friendly retirement home was another option – but at CAD$7,000 per month, it was also unaffordable.

Which leaves the last option, long-term care (LTC) homes, also called nursing homes, multi-storey structures that look, from the outside, more like a hospital than a home. These provide around-the-clock care to people who need it. The cost is subsidised by the government. The waiting list runs into the thousands and the waiting time for a bed is about 100 to 150 days.

In the end, an application for LTC would have been submitted on behalf of the patient and she would have waited in the hospital. She would have been homeless – no LTC home, no retirement home, no family home – for about 100 days.

In his book, Neglected No More, André Picard, health reporter for the Globe and Mail, explored this problem. He wrote the book in the wake of the first wave of the pandemic. Reports from that time showed Canada had the worst record for covid19 deaths among institutionalised residents when compared to other developed countries.

Cautioning against further “warehousing of elders,” he said Canada needed to urgently shift its focus away from institutions to actual homes.

Using patient and caregiver stories, he made the case for more support for unpaid caregivers, and increased public funding for services at home. Yes, for some, around-the-clock institutional care was necessary, but he added: “…placing elders in long-term care facilities should not be the default setting; nor should it be a substitute for underfunded home care.”

As the ageing population grows worldwide, including in TT, policies need to evolve to address their complicated needs. Simple solutions like building buildings aren’t going to cut it, neither is preaching to children to honour their parents. It is the responsibility of policy-makers to create the infrastructure that would allow people to age with dignity.

With adequate supports in place, we can collectively ensure the elderly are given the best chance at ageing in their own homes. Anything less is unconscionable.”

Taureef Mohammed is a graduate of UWI and a geriatric medicine fellow at Western University, Canada