Connecting with nursing home residents with dementia a challenge for families during pandemic

With no end in sight to the COVID-19 lockdowns walling off nursing home residents from their families, Naomi Mison has found inventive ways to reach her 68-year-old mother Frances, who has dementia and lives at a long-term care facility in Edmonton.

Twice a week, Ms. Mison, who resides in Kelowna B.C., uses the SkipTheDishes app to ferry her mother’s favourite meals – ginger beef, fish and chips, pizza and burgers – to her from Edmonton restaurants. On Mother’s Day, she sent Greek food and flowers. To keep her mom occupied, Ms. Mison orders stacks of Danielle Steel romance novels and Hello! and Us Weekly gossip magazines through Amazon. They speak every day using the land line phone that Ms. Mison had set up in her mother’s room. This week, home staff will also install a tablet so the two can video call each other and have virtual dance parties, a province apart.

“For caregivers, it’s about thinking of creative ways to be present even if you can’t be present,” said Ms. Mison, who hasn’t seen her mother in three months and has no sense of when they’ll meet again. “Selfishly, of course I want to see her, spend time with her and help her, but this isn’t just about me.”

More than two-thirds of long-term care residents have some form of dementia, according to the Alzheimer Society of Canada. Experts say some are struggling to understand the visitation bans at their nursing homes and feeling abandoned. Troubled by their isolation, family members are hurriedly coming up with workarounds to connect from afar.

“I don’t know if [my mother’s] totally grasped COVID and what that means. She has said she’s lonely and misses the visits,” said Ms. Mison, 34, who’s hoping to provide “simple comforts" for her parent.

Experts have found that dementia patients are particularly vulnerable now. A lack of social interaction and disorienting changes in routine – family visits and daily programs cancelled, confinement to bedrooms, staff in face-covering masks – can increase confusion, stress and anxiety for those with the disease.

“We are hearing about it causing a faster decline in cognition and mobility," said Saskia Sivananthan, chief science officer at the Alzheimer Society of Canada. In some cases, there is also an increase in aphasia, or an impairment in the ability to communicate, she added.

“What we’re hearing about is a lot of people living with dementia who are sleeping excessively or who are just sitting in front of the TV,” said Dr. Sivananthan, who is co-chair of the new COVID-19 and Dementia Task Force identifying health care gaps and offering support for people with dementia and their families through the pandemic.

Harold Hefferton, 71, structured every day around his trips to see his wife Barbara, 69, at her long-term care home in St. John’s. Ms. Hefferton was diagnosed with dementia at 61.

“As long as I had eyes on my Barb – could be ten minutes or two hours – that was what satisfied me so I could go on with my day,” said Mr. Hefferton, who has been married for 50 years.

He would put on music videos – Elvis Presley, Rod Stewart – and sing and jump around his wife’s room. “Basically I would visit and act a fool,” he said. “She’d try and dance in the bed.”

Mr. Hefferton has not been able to see her in person for more than two months. “That is a big void,” he said. “It’s a very distressing, anxious, scary time.”

He’s trying to connect with his wife any way he can. After learning that the home permits mail, Mr. Hefferton sends a supply of her favourite chocolate-covered biscuits.

Window visits are not possible for the couple – she’s on the second floor and staff “don’t want me up on a ladder,” he said. But Mr. Hefferton is making video calls through the FaceTime app, and once read his wife a poem he wrote. The technology is hit and miss: “A couple of times she’s acknowledged me and we’ve had a bit of fun but other times she’s resistant and swatting at [the screen, saying] ‘Get out of my room.'"

Kathleen Fraschetti and her family are trying new routes to reach her mother Moira Courtenay, who was diagnosed with young onset Alzheimer’s when she was 51 and went into a Mississauga long-term care home last December.

Before the lockdowns, Ms. Fraschetti or her father, brother or sister would visit every day. The last time was in mid-March, when they played a game of Bananagrams. At this stage of the disease, Ms. Courtenay, 60, is non-verbal, visually impaired and wheelchair bound.

“It was about her having familiar voices around her and being told that she’s loved,” said Ms. Fraschetti, a 28-year-old kinesiologist in Toronto.

Today, they call Ms. Courtenay and employees at the home hold a land line phone to her ear. They’ve done video calls, window visits and left snacks for her with staff – licorice, popcorn, chocolate and lightly salted chips, “things that were familiar and her favourites when she was able to express how much she liked them,” Ms. Fraschetti said.

As the lockdowns persist, the daughter has found her mother growing less responsive. While she lauded the home’s careful measures for keeping those who live and work there safe, Ms. Fraschetti worries her mother may sometimes feel left behind by the family.

“She doesn’t understand that we’re in the middle of a pandemic and that we haven’t just abandoned her. I hope in our FaceTime [video calls] it comes across that we’re still here for her, we still love her, we haven’t left her. The minute that we’re allowed to be there, we will be.”

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