‘Losing precious months’: What isolation and lack of touch mean for Washington residents with dementia and their families

Marijo was well into her 80s, but she wasn’t letting her age or her move to an assisted living facility on the Kitsap Peninsula slow her down. She’d visit with her daughter daily, bring home bags of books from the library, where she had great conversations with the librarian, walk along Liberty Bay and point out birds and critters.

She’s gone now. Or the Marijo her family and friends knew, a former school librarian whose worst fear was a dementia diagnosis. She can’t get out of a chair unless someone verbally directs her. She’s largely limited to “yes” and “no.” She’s lost 25 pounds.

Ten months of pandemic-lockdown isolation took her.

The coronavirus vaccine has brought hope to the state’s 70,000 residents of 4,000 long-term care facilities who continue to bear the brunt of the deadly virus. But as the new form of protection arrives, residents like Marijo and their loved ones are grappling with the effects of lockdowns that shielded them from the virus but left them vulnerable to the trauma of social isolation.

“I feel like I lost nine precious months,” her daughter Kay Jensen said in December.

The Marijo, 89, that Jensen remembers is in there, somewhere. She sang “Jingle Bells” like nobody’s business. When Jensen brought in her favorite macaroni and cheese and homemade apple sauce, her mother inhaled everything on her plate. The smell of Belgian waffles on Christmas Eve conjured a reaction.

Social isolation is difficult for anyone, but advocates say that for residents with Alzheimer’s or dementia, a lack of visits and decrease in mental stimulation can accelerate cognitive decline that in some cases may be irreversible. Having and keeping connections keeps our brains engaged in even basic ways, said Dr. Carolyn Parsey of UW Medicine’s Memory and Brain Wellness Center.

“Aspects of socialization and talking and interacting with people, those skills can stay pretty strong in people who have memory loss,” Parsey said. “When we aren’t engaging those parts of the brain that normally are pretty well preserved and are relative strengths with people with dementia, we start to see them deteriorate.”

Throughout Washington, 500 more people died of Alzheimer’s or dementia than expected this year, according to an analysis by the Alzheimer’s Association. That number, which is 10% higher than normal and known as “excess deaths,” could be due to a number of factors related to the pandemic — lack of services, an overburdened health system, or fear of seeking treatment, according to the association.

It’s not just that visits stopped, but that a resident’s world, which used to include meals in a dining room with friends and outings with neighbors, has been reduced, in some cases, to their room. Telephone calls and evolving technology like FaceTime can help fill the void but don’t replace close contact.

“To lose all of that, any human being, no matter their age or medical condition, would decline,” said Dana Gargus, Kitsap County’s long-term care ombudsman.

Robyn Grant of the National Consumer Voice for Quality Long-Term Care, gave an example of residents needing help with their meals.

“Someone might deliver it to a room, but it’s more than just a tray,” said Grant, the organization’s public policy and advocacy director. “Milk cartons need to be opened, straws need to be placed, meat needs to be cut.”

Valuing connection

Marijo was a stay-at-home mother of Jensen and her two siblings in Olympia, then went through night school to earn a librarian’s teaching certificate in her early 50s, after she and her husband divorced.

She taught in Olympia public school libraries, and had a heart for kids with learning challenges, specifically students with dyslexia, before it was a commonly known learning disorder. She especially loved holidays, looking for any reason to decorate the library and find a book to go with the day.

She kept in touch with some families and had a big group of friends in Olympia. Her mailbox still overflows with messages from friends and gal pals.

“It’s evidence of her valuing connection with people,” Jensen said.

Marijo cared for her own mother, who lived to 99 and spent the last two years in a nursing home that, according to Jensen, was the epitome of the stereotype of an “old-fashioned” facility. Marijo had a lot of guilt about the experience, which motivated her to become a volunteer ombudsman for other families with loved ones in long-term care.

At 80, she told her children she was uncomfortable driving, and they started noticing changes. There were subtle shifts in her previously impeccable penmanship. She burned a pan through, twice, because she forgot to turn off the stove. Her children visited and found her cupboards bare; she was eating spaghetti with ketchup.

She received her Alzheimer’s diagnosis about five years ago.

“It was her worst nightmare that this would happen,” her daughter said.

A daily routine

Every morning, Jim Russell stops by a Starbucks inside a Safeway, buys an ice coffee with cream on the side and heads to Aegis Madison, a long-term care facility in Seattle. He drops the coffee, along with trail mix and apple chunks, with the concierge at the front desk, who then calls another staff member to bring the treat to Russell’s daughter, Lynne.

The coffee drop-off has become a routine for Russell and Lynne, who is 55 and has early-onset Alzheimer’s. Routine is important. Russell, 79, lives in an apartment building across the street from Lynne, but the closeness he sought when he moved there following Lynne’s diagnosis and his wife’s death is hampered by the facility’s lockdown.

They talk on the phone and through Facebook Portal, and he visits her in Aegis’ “outdoor living room.”

Russell noticed a drop off in her capability soon after the facility shut its doors. She’s an extrovert and loved going for walks and on trips with Russell. She had symptoms of depression and would grow agitated. Russell bought her a stationary bike from Walmart and had it delivered to the garage and put together, then had it taken to her room. Time on her bike helps her calm down.

“You just realize how extraordinarily important it is to be there and be able to touch her, and look her in the eye and see her smile,” Russell said. “There’s no hugging, no laughing, no sitting and just enjoying being with her. You get to be jealous of the people who are in the facility who take care of her.”

Jensen, whose medical background includes work as an intensive care nurse, went as far as to ask her mother’s facility if she could apply to be a caregiver, though she — and Russell — are quick to commend the care their loved ones have received at their respective buildings. The only thing separating her from the facility and being with her mom, Jensen thought, “was a nametag.” Facility officials told her she would be a liability.

A delicate balance

Long-term care facilities, especially memory care units, are in a delicate balance between preventing COVID-19 from infiltrating, potentially infecting the most medically vulnerable, and preventing loneliness, which health experts say is also toxic.

People with dementia are at a higher risk of COVID-19, because they don’t understand masks or social distancing, and may not be able to articulate what symptoms they have if they do get the virus.

“If you have dementia and you are ill enough to be hospitalized, you go to the ICU, you are going to pull out IVs, and resist treatment, you don’t understand what is happening, alien people are looking at you in PPE, and then they have to sedate you, and every time you sedate someone with dementia it accelerates cognitive decline,” said Dr. Tatiana Sadak, a University of Washington nursing professor who specializes in dementia. “Going to a hospital fixes one thing but creates more problems.”

Loneliness is dangerous, too; it’s more dangerous than smoking, Sadak said. Sitting in a chair all day compromises circulation, stress triggers an inflammatory response.

But from a public health standpoint, facilities don’t have a choice, Sadak said.

“My heart bleeds for families and care staff, they are picking up the brunt of it,” she said. “But how can you protect people with the highest risk for the lethal outcome, when you weigh out the dangers of lack of socialization?”

‘I wish I could be with you’

Long-term care facility employees have worked to fill in the gaps left by reliable visitors, but they say it’s impossible to address every need, especially in an industry that’s struggled with staffing numbers and turnover largely because of long hours and low wages. Employers have utilized an “all hands on deck” approach, so hours are filled with additional tasks like delivering meal trays or helping set up an iPad for a family conference.

“No caregiver in a long-term care facility is going to have the time to sit down and read someone’s mail to them,” said Gargus, the Kitsap County ombudsman.

At Aegis Living facilities, including the building where Lynne lives, staff members have a goal to touch each resident 10 to 15 times a day to address social isolation, said Chris Corrigall, vice president of lifestyle enrichment at Aegis.

It can be emotionally taxing, Corrigall said, and social isolation for residents with dementia was considered a threat even pre-pandemic.

“Our model within the pandemic and outside the pandemic is similar in that we meet them where they are, and nurture them through that, even if we need to repeat that process over and over,” he said. “We have strategies in place that help our seniors feel comfort and feel safe, but there’s no question it is challenging.”

Because her mother had declined so severely, Jensen was last month made an essential support person, a designation for loved ones or caregivers of residents who can’t do outdoor or remote visits or are in circumstances like failure-to-thrive or end-of-life care. She visits daily, wearing personal protective equipment.

“While I am grateful to be in there, I’m very, very sad it’s because she had to get bad enough that there was a reason for me to go,” Jensen said.

Russell set up an Amazon Echo and a Facebook Portal device for Lynne, and printed photos of her three sons and relatives on a glossy paper. He has a list of her favorite musical artists taped on a wall, like Dolly Parton, Lyle Lovett and George Michael. For her birthday in early December, her friends organized a Zoom party, so she could see each of them. Her three sons visit, too. She often “loops,” repeating words or phrases like “well, that’s the way it goes” or “you know how it is,” a behavior that is common among people with dementia.

But when she sees her boys, Russell says, she trembles with excitement. Then she says, “I wish I could be with you.”