People with Alzheimer’s Disease and their families face plenty of challenges when everything is normal, but the COVID-19 pandemic has made life considerably more stressful and complicated for local families. Many are isolated without the occasional relief formerly provided by friends, outside caregivers and daycare programs. Others, with loved ones in residential settings, mourn the inability to see them face to face and live in fear of virus outbreaks.
Mary Sandridge, a long-time Crozet resident, is the director of communications and marketing for Alzheimer’s Association chapters in much of Virginia. “Our support for caregivers is more important than ever during the pandemic,” she said. There are increased resources online, including a new support group for younger caregivers who find themselves taking care of parents and children. The association also provides materials and training for the intimate caregiver groups that meet in neighborhoods throughout Virginia.
Suzanne Stephens, a volunteer with the Charlottesville chapter of the Alzheimer’s Society, facilitates the local support group that formerly met monthly at the Crozet Library. She said those in the group are feeling increased stress, and regret that just when they need it most, they can’t gather as usual.
They miss it,” said Stephens, who is a caregiver herself, “and so do I.” They met recently on a conference call to touch base on how they’re all doing, and hope to manage a June meeting outdoors somewhere where they can all observe a proper distance.
The monthly get-togethers allow caregivers to express their concerns and share what works for them. One group member, with an elder recently admitted to residential care, said her extended family makes sure their grandfather gets a call every day, with relatives alternating. This makes sure he hears from everyone.
Another caregiver, who leaves home for work each day, finds it frustrating that FaceTime or Skype calls, which require nursing home staff to help, aren’t available on the weekends, the only time those who work full-time are able to call.
Those providing care at home have their own emotional issues, plus enormous demands on time and attention. Stephens said there are a number of ways that the pandemic has increased the burden on caregivers.
“Imagine trying to work from home, having children at home who need help with school work, and also caring for someone with dementia,” Stephens said. That dilemma required one family to seek residential care, a difficult and painful choice. She pointed out that families who formerly had some help are no longer comfortable with someone coming into their home, and services like JABA’s Adult Day Care Center and visits from friends or paid caregivers have been affected by the lockdown. She said these issues are likely to arise and perhaps increase even after the lockdown eases for many.
“Without help, It would be nearly impossible for someone who has to leave home to work,” Stephens said. Others, temporarily at home, worry that their family member with dementia will be worried and confused when they must return to work after several months of being at home full time.
Besides being a caregiver, Stephens has had professional experience in dealing with dementia. She’s served as a trainer for caregivers with Home Instead (a private caregiving agency) and has a special interest in using music as a way to reach those whose memories normally seem inaccessible. She’s used music to both comfort those she’s cared for, and to inspire memories from their youth. She’s also been very interested in––and referred Crozet clients to––a pilot project for those in early-stage Alzheimer’s Disease, now temporarily on hold.
Annette Clark, family services director for the regional Alzheimer’s Association, reminds us that the association has a number of resources for those in every stage of dementia.
To respond to the current crisis, the association quickly developed specific materials, including activities for entertaining those in early and middle stages, and what to do in the case of an outbreak in the adult home housing a family member.
There’s a hotline for caregivers that’s available around the clock, advice on determining the safety of hiring a health care aide, tips for establishing extra hygiene measures for both the aide and the patient, and what to do if you must move your family member back home or to another facility because of an outbreak. These materials are accessible to everyone (see below).
Also important, Stephens said, is the informal sharing of real-life solutions between members of the Crozet support group. “Sometimes people join the group when they’re at their wit’s end,” she said: “They may not be getting any sleep because of night-time wandering, or they may be dealing with increasing aggression, or disruption at meals, or personal care.”
Chances are, someone in the group has already dealt with the problem, whatever it is. An engineer examined his home with an eye towards safety, anticipated nearly every way his relative could come to harm while the family slept, and devised a system of well-placed barriers, noise alarms and locks. There was some good advice recently for avoiding distraction at meal time: one resourceful cook served only one part of each meal at a time; another family caregiver learned not to be alarmed if her mother poured coffee on her cereal, for instance, figuring that though it was an unusual combination, it wouldn’t hurt her.
That’s an attitude that Stephens finds is key for all caregivers. “You just have to pick your battles,” she said. Another important lesson that most caregivers learn is to establish a routine that works and stick to it as best you can. “Of course, that’s been difficult recently,” she acknowledged.
Clark talked about the sad reality of those with family members in residential settings temporarily closed to all visitors. “Although they understand the need (for the closing), they would love to see, touch and hear their family members,” she said.
Clark said her agency encourages families to step up communication with nursing home staff, and to use technology to create face-to-face visits. In her experience, technology works well for some people with dementia, but others find it confusing. Some caregivers say it can even be frightening for them to see their families via a screen rather than in person.
But Clark said families have been very creative, staging drive-by parades, and visiting through windows and doors. Others make signs and hold them up. “It’s not ideal,” she said, but it does work for some.”
Find tips for caregivers specific to the pandemic: alz.org/help-support/caregiving/coronavirus-(covid-19)-tips-for- dementia-care. Other resources for communication, general health, and using music to stimulate memories can be found at www.alz.org. Details specific to the local chapters are at www.alz.org/cwwva.
The 24-hour helpline: 800-272-3900.
For questions, or to join the Crozet support group, which meets on third Saturdays from 9:30 to 10:30 a.m., email Suzanne Stephens: [email protected] or call 434-242-0783.
There are also groups for people with an Alzheimer’s Disease diagnosis: Call 1-800-272-0783.