When Alfred Aquilina brought his wife to the long-term care facility that would be her new home, he was carrying her suitcase and a heavy load of emotions.
He knew it was the right time for Mercedes Aquilina, who at age 65 has early onset dementia and Parkinson’s disease. But that didn’t make it easy.
“It’s a terrible feeling to be dropping your loved one there,” he said from his home in Sault Ste. Marie, Ont.
“I’m thinking about how is she feeling, how she’s leaving her home, something that she’s … built with me and raised our kids and all that kind of stuff. And all her stuff is there, the things that might have grounded her.”
But there was a familiar face there waiting for them, and that was a “godsend,” Alfred Aquilina said.
Aquilina and his wife were part of an Alzheimer’s Society of Ontario pilot project in several communities in the north that assigns a staff member to help prepare someone with dementia – and their family – for a move to long-term care and support them for up to three weeks after.
Their contact took Mercedes Aquilina by the hand and settled her into her new room when they arrived in January, while Alfred Aquilina spent time filling out paperwork and taking care of other administrative tasks.
“Continuity is so important,” he said. “Having someone there who you’re familiar with, and from the same agency, and all of that kind of stuff, so you’re not handing over a baton or something. The services are not sort of jerky in that sense. They’re very smooth and continuous.”
Around one-third of newly admitted residents with dementia will visit an emergency room within 30 days of such a move, which can be traumatic and stressful, the Alzheimer’s Society said. In Sault Ste. Marie alone, not one of the 156 people who have participated in the pilot program required a hospital visit during the time they were supported, the organization said.
“(For) the most important person in this equation, which is the person with dementia, being in the hospital is not good for them. It’s very disruptive, disorienting,” said Cathy Barrick, the CEO of the Alzheimer’s Society of Ontario.
“But it’s also not good for the health-care system. It’s already stretched beyond its capacity and these folks, when they end up in hospital as well, they require a high level of care and supervision.”
The society is asking the provincial government to spend slightly under $22 million to fund the transitional support program at all long-term care homes in the province.
It’s one of three key requests from the society, which also include $7.6 million to expand provincewide a pilot project in the Brantford area that saw a staff member embedded in an emergency department divert 60 per cent of visits from people with dementia by talking to them about options for community supports.
“If you have a person living with dementia, and you’re stressed or they need more help than you can provide, taking them to the emergency room is not the answer,” Barrick said.
“But currently, that is the answer, because there can sometimes be no other option to get the help that you need. But when they get admitted, they’re in those (alternate-level-of-care) beds, and you can’t get them out.”
The society is also asking for $3.3 million to expand a program that connects people to supports when they are newly diagnosed, saying the additional money could help them serve up to 5,000 new clients.
The budget requests come at a time when the government is looking for ways to ease hospital pressures, particularly in crowded emergency rooms and so-called alternate-level-of-care beds, in which a patient is deemed well enough to no longer need full-time hospital care but can’t be discharged, often because of a lack of long-term care space or home care supports.
A spokesperson for Health Minister Sylvia Jones said last year’s budget added $5 million per year for three years to Ontario’s dementia strategy.
“To support individuals with dementia and their caregivers, our government has invested in a number dementia programs, including behavioural supports at home and in the community; patient navigation services; and increased access to training and education for care partners and the dementia workforce,” Hannah Jensen wrote in a statement.
Aquilina’s wife has been in her long-term care home for about seven weeks. How she is doing varies by the day or the hour, but she is trying to be accepting, sometimes even jovial, he said.
“She’s even cracked a few jokes now, and unfortunately, her speech is so muted and garbled that I can’t always understand what she’s saying,” Aquilina said.
“But I laugh anyway, because, you know, it makes me feel good to see her that way.”