Isolation the real threat for loved ones with dementia, families say
Loss of social interaction taking a heavy toll, medical experts agree
Every morning, Maria Zachariou, 83, sits patiently by her front door, dressed and ready for her day of programs at her local seniors' centre. Then her daughter reminds her she has to stay home because of COVID-19.
Zachariou has dementia, and her family says they're more concerned about the impact of that missing social interaction — conversations, activities and simple human touch — than they are about the coronavirus.
"Since the pandemic, her decline has been rapid," said Christia Zachariou, Maria's daughter. She said her mother has been having trouble sleeping, bathes less frequently and has "lost interest in things she used to enjoy."
There are more than 24,000 people living with some form of dementia in this region, according to the Dementia Society of Ottawa and Renfrew County.
Dr. Frank Knoefel, a physician and researcher at Ottawa's Bruyère Research Institute, said in his 27 years in practice, he's never witnessed a general decline among dementia patients like the one he's seeing now.
"I have never had as many people decompensate in one year as I did last year. I have never seen so many people pass away, so many people admitted to hospital, all in crisis, and so many people that I care for on a regular basis needing extra medical pharmaceutical support," Knoefel said.
No hugs, no exercise
It's been 10 months since John Hynes got a hug. Hynes, 83, has a great-grandaughter he's never met, except for a few visits via an iPad.
"How he's doing between these once-weekly calls is anyone's guess," said his sister Maureen Madore, who lives more than an hour away in Gatineau, Que.
Hynes contracted and survived COVID-19 at the Prescott and Russell Residence in Hawkesbury, Ont., but Madore constantly worries about the other impacts of the pandemic.
"Since COVID hit he hasn't had any exercise at all, mentally or physically," said Madore. "My big concern is that he will not be able to walk by the time this is all over."
'Cracks in our health-care system'
It's a worry that Dean Henderson says keeps him up at night.
"I think COVID has exposed a lot of cracks in our health-care system," said Henderson, director of client experience, education and innovation with the Dementia Society of Ottawa and Renfrew County.
Many of that organization's offerings are now online, including a program that connects volunteers with dementia sufferers for virtual visits.
"Keeping that connection is so important," said Henderson.
Some families moved their loved ones into long-term care so they would be around other people, but too often over the past 10 months, that kind of contact has been forbidden.
"There is simply not enough staff to spend time with the residents that is not a duty-driven conversation," said Betty Yakimenko, whose mother lives with dementia at the Madonna Care Community in Orléans. "I truly believe that during the pandemic she lost a lot more [of her cognitive abilities] than she would have if we had been allowed to have contact with her."
Every time the home undergoes an outbreak, residents are confined to their rooms. Visits have been limited for months, and everyone is wearing personal protective equipment — hardly the atmosphere families were hoping for.
'It's like there isn't any life left'
Armed with boxes, bins and an Allen key, Stephanie Kocielski recently created her own solution to her mother's isolation at Madonna.
Kocielski's mom, Beverly Peterson, got her first dose of the COVID-19 vaccine earlier this week, but Kocielski knows there could be many more months of isolation still to come.
I want the residents to all be safe, but some days I wonder what we're protecting them from.- Stephanie Kocielski
"I brought in and sanitized a shelving unit from Ikea, and a large Rubbermaid container full of various activities. Now when I visit, we colour, do crafts, build things with blocks, read, create things with playdough, count fake money, work on simple puzzle activities, sort cards, dance the polka," said Kocielski, who's allowed into Madonna as an essential caregiver.
Kocielski said many of the items she brought in for her mother can be found "behind the locked door of the activities room," but they can't access that room right now.
She said she wishes she could share the activities with other residents who don't have family members visiting, but that's not allowed, either.
"I love spending time with my mom, but it's sad walking through the building. It's like there isn't any life left. I want the residents to all be safe, but some days I wonder what we're protecting them from."