How to help those with dementia stay connected during the pandemic
Alzheimer’s disease, already a long and lonely journey, is even more so in the time of Covid, testing the capacities of those living with it and those who care for them. The extra precautions and restrictions necessary to protect this vulnerable population erect yet more barriers between them and the world around them.
When it became clear that Covid-19 was exacting an especially dangerous toll on elderly people in congregate living settings, “our response was to minimize potential exposure to this extremely vulnerable population. Included in that was our decision to essentially lock down our facilities and in some cases prevent (patients) from even leaving their rooms,” says Dr. John Weigand, chief medical officer for National Church Residences. The organization operates in 25 states and in Ohio, where six of its 95 communities have memory care units. Three are in Central Ohio.
“There were very real concerns about social isolation” and its impact on depression and possible decline in patients living in the organization’s memory care units, Weigand says.
“Patients for the most part are social. In memory care units, social contact is one of the things that grounds them. That’s been a real challenge for staff.”
Linda Roehrenbeck is executive director at National Church Residences, Mill Run, which has a memory care unit. She says there is no one-size-fits-all solution for dementia patients.
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A common response during the quarantine has been for patients to stop or reduce eating. Many families bring food when they visit, and mealtime becomes more than a meal. They now leave food in the foyer, along with cards and pictures to tap into long-term memories, Roehrenbeck says. “Sometimes it’s the only stability (patients) have left.”
Even something as commonplace as masks can cause agitation and fear among those with Alzheimer’s and other dementias, says Trey Addison, state public policy director for the Alzheimer’s Association. “Masks are on a laundry list of complications. (Covid) throws another wrench in the situation.”
To respond to these challenges, the Alzheimer’s Association and long-term care facilities are upping their online presence and devising on-site solutions to break down barriers.
The association has moved its support and education programs to an online format, and recently restarted its arts program online, with a painter/instructor guiding patients who use materials they have at home. “Our ability to connect virtually is getting better each week, and as people have gotten more comfortable, we’ve had the opportunity to bring more people into the fold,” says Vince McGrail, executive director and CEO of the Alzheimer Association’s Ohio chapter.
The association encourages families to use its help line, 1-800-272-3900, available 24/7, 365 days a year. The organization’s website contains a page dedicated to Covid information for caregivers (including professionals) at alz.org/covid19.
The Alzheimer’s Association and the Ohio Health Care Association, which represents the state’s long-term care and assisted living communities as well as home care and hospice providers, have created a tip sheet for families about topics like Facetime and window visits and the added confusion patients now experience. It also has held webinars and town halls addressing the fears and frustrations of those caring for an Alzheimer’s patient at home. “For the caregiver at home it’s yet another version of isolation, and the level of strain is unimaginable,” Addison says.
McGrail says the stress now is twofold: the isolation of being home, and the strain of being physically separated from loved ones in long-term care or assisted living facilities.
So powerful is the connection that some multilingual Alzheimer’s patients revert back to their first language, Roehrenbeck says. They also have shown increased repetitive speech or motion, clinging and emotional detachment. “So we bring in extra layers through music’’ and similar activities. At the same time, some patients need fewer stressors like light or sound. The facility uses the Cohen-Mansfield Agitation Inventory, a 29-item scale to systematically assess agitation and address it in residents.
“There is no one way to do this. With this patient population there is a lot of walking. They walk holding hands with a friend. They lack the insight to grasp the dangers,” Roehrenbeck says. Patients receive cell phones to communicate with loved ones, but have a hard time making the connection between man and machine. Staff at their side help them interpret what they are hearing and seeing.
It can be especially hard for families unable to see how their loved ones are doing inside the building, so patients make cards that say, “I’m OK,” or “It’s a good day for me,” that they share on a newly created private Facebook page. Roehrenbeck says the page “has become a community within a community. Everybody is family.”
Meeting the additional needs of enabling audio/video visits or the extra time required for meal preparation and delivery has meant increasing staff, and thereby costs. Weigand says National Church Residences also has paid increased hourly wages.
The Alzheimer’s Association also feels the weight. “We are struggling on the revenue side,” McGrail says. The association canceled a major fundraising gala in May but hopes to go on with its annual Walk to End Alzheimer’s Sept. 27 at Columbus Commons. Nearly 5,000 people participated in last year’s walk, which raised more than $881,000.
What this year’s event will look like is a work in progress, he says, but “there definitely will be a virtual component. We’re working on how to have something meaningful and powerful.”
From real-time decisions that impact fragile people’s lives to interpreting published Covid cases at each facility, “This is an unprecedented time,” Weigand says. “I think you need to provide a lot of grace to people.”
Laurie Allen is a freelance writer.
Walk to End Alzheimer's
Organization: Alzheimer's Association
Date: Sept. 27, 2020
Time: Noon check-in; walk begins at 2:15 p.m.
Where: Columbus Commons
Walkers: Nearly 5,000 in 2019
Raised: $881,000 in 2019
Contact: Asha Abdi, 614-442-2011 or firstname.lastname@example.org