Virtual Caregiving: The Struggle To Find Support Over The Phone, Online
Part I: Caregivers Struggle To Find Support Over The Phone
Before the pandemic, caregiver support groups were a vital lifeline to those providing unpaid care to a loved one with dementia. COVID-19 put a stop to these in-person meetings. Many of these groups turned to Zoom and saw an increase in new members. But others were forced to use the telephone and there’s been a price.
Juan Francisco Ramirez is standing outside the offices of the Alzheimer’s Association, Desert Southwest chapter near McDowell and Third streets in Phoenix.
Before the pandemic, Ramirez would come here to attend his monthly Spanish support group meeting. His sister is living with Alzheimer’s disease.
Speaking in Spanish, Ramirez says "more than anything, the meetings were a chance to talk about each person’s experiences and focus on ways to alleviate caregiver stress, as well as the stress afflicting the person with the illness."
For Ramirez, those small, in-person gatherings — roughly 10 people or so — were invaluable. It was a chance to bond with other caregivers, some brought in homemade food. And, of course, the meetings were in Spanish. Ramirez is originally from Guatemala.
But after everything shut down due to the pandemic, the meetings stopped. And the group started using the telephone.
Ramirez says, "it was because people didn’t have access to the technology [like the internet] and many didn’t have a computer."
Which meant Zoom was not an option. Graciela Mera is the community engagement coordinator with the Desert Southwest chapter. She led Ramirez’s group.
“So, being in-person give us a better connection,” she explained. “Because we want to see each other, we are hugging, we were feeling that connection as a family.”
But on the phone, well, that intimacy evaporated.
“Right,” said Mera. “Because you don't know who is around the house; you don't know what to share, you don't see the person [on the other end of the line].”
"So, being in-person give us a better connection. Because we want to see each other, we are hugging, we were feeling that connection as a family."
— Graciela Mera, Alzheimer’s Association, Desert Southwest chapter
And there’s also this unease, explains Ramirez, among some Latinos when it comes to talking about “dementia” because it’s still so taboo.
Ramirez says, "people feel like they can’t tell the world what’s happening in their family, because what will people say, ‘Is everyone in the house crazy?’" He says it’s a cultural barrier.
Then he goes on to say, "excuse the expression, but they say that the person has 'lost all of the connections in the brain.' It’s very common for Latinos to say that."
Irma Prettenhofer is Mera’s counterpart in the Desert Southwest’s Las Vegas office. She has run into the same hurdles with her Spanish support group.
“If I don't call them and invite them to the support group, they're not going to show up,” she said. “That relationship is very important.”
But the only way to maintain that relationship is through face-to-face meetings. Otherwise the trust can fizzle over time.
“So, we’re trying to keep them motivated,” she explained.
And that’s important. Because if they don’t show up over the telephone, they might not show up when the groups do meet in-person again, which could be later this summer.
But even Ramirez has seen his circle of support diminish.
He says, right now, he’s only in communication with three people.
And this isn’t just happening here or in Nevada. Ivonne Arias is a social worker and a study coordinator at the Shiley-Marcos Alzheimer's Disease Research Center at University of California in San Diego.
She also hosts a Spanish support group, which was pretty big — before COVID.
“But once we transitioned the group onto a virtual platform, we did see a significant decrease in participants,” she said.
So they conducted a survey to find out why. Technology was one reason, so was the preference to be in-person — Arias describes Latinos as coming from a “collectivistic culture.”
The caregivers also reported that since they were now full-time caregivers with no access to respite — something that was offered when the meetings were in-person — Arias says, “a lot of them just had difficulties just joining or making the time to actually have this phone call without their loved one interrupting. So that’s been the main issue."
And the group went from 10 participants to one or two per meeting.
On the other hand, said Arias, the young onset support group saw a significant increase in participants. So when that two-hour meeting was in-person and in the middle of the day, only two or three people showed up, she said. Since going virtual, many more people are joining.
“This transition [to virtual] has been so much more flexible with their schedules because they don't have to drive anywhere,” she said. “They don't have to look for parking, because that's also time that's taken away from their jobs.”
So while Ramirez looks forward to seeing and connecting with his fellow caregivers again, many organizations say COVID-19 has really opened up these meetings to a much wider audience and they plan to continue offering virtual support groups in the future.
Part II: Caregivers Find Support In Online Platforms
In Part One, we told you about the challenges facing Latino caregivers after in-person support groups pivoted to the telephone during the pandemic.
Participants became less engaged; they weren’t comfortable talking about a taboo subject like dementia over the phone. But there’s another group of caregivers who, thanks to platforms like Zoom, have found support for the very first time.
Brandon Feldt is not your typical 25-year-old.
“I would say [I am] a caregiver, a full time student and I manage overall health care for my mom, who has frontotemporal dementia,” he explained.
Or FTD, which is a lesser known type of early-onset dementia that can affect language, behavior and movement.
“Her first symptoms started in 2015,” he said.
And by 2016, she needed full-time care. Brandon was 19 at the time.
“I would say I probably wasn't a very typical 19-year-old,” he said, chuckling. “I had to stop going to school. I had to drop out, I was in my first year of college, I had to drop out just to manage her diagnostic journey.”
Which can mean countless doctors’ appointments, tests, and, in the case of Brandon’s mom, a brain biopsy.
“And then [there was] her day to day care,” he said. “Those were two full time jobs that I had to do.”
So, even though he knew about the support groups offered at the research center at the University of California in San Diego where his mom was being cared for, he just didn’t have the bandwidth to participate.
“Because I was just so busy,” he said. “Like I had 10 things to do and only had time to get eight of them done. And so I couldn't add getting support on top of that.”
"Because I was just so busy. Like I had 10 things to do and only had time to get eight of them done. And so I couldn't add getting support on top of that."
— Brandon Feldt
But the coronavirus pandemic changed everything. Those in-person meetings went virtual.
And for the first time, Brandon was able to participate in a support group.
“And so the increase of availability of these support groups allowed me to refocus on myself, take care of myself, and actually start to process some of the emotions that I set aside during that time when I was not able to process them,” he explained.
And he’s been able to connect with others who are facing similar struggles.
Tracey Truscott is a licensed social worker at the Shiley-Marcos Alzheimer's Disease Research Center at UCSD. She leads some of the support groups there.
“What I've noticed is that it's a different group, yes,” she explained. “We have a lot more people joining.”
And they’re joining from all over the country.
“And we're also seeing, which I hadn't seen before, a whole family being involved in a support group for the one person,” said Truscott.
For example, there’s the sister in Idaho, the brother in New York and the other sister in Colorado, she said joining the meeting.
“So they can be part of the caregiver support group and support the family that's actually doing the caregiving,” she said.
And that’s a big deal, says Truscott. Because often the dynamic can play out like this: one person is the primary caregiver, they’re living with or near the person who has dementia. The siblings live far away and may not understand the day to day challenges. Then conflict ensues.
But let’s circle back to Brandon. His mother has that rare dementia — FTD. Luckily he can take his mother to a place where the providers understand the disorders caused by FTD and the challenges facing these caregivers and their loved ones.
But there are only so many FTD-specific clinics around the country, according to Bridget Moran-McCabe, MPH. She’s the support services manager at the Association for Frontotemporal Degeneration, or the AFTD.
She said the FTD clinics that offer support groups have seen a surge in participants since going virtual.
“So, for instance, Massachusetts General has a large FTD center,” she said. “And the support group that is affiliated with that clinic, they've been getting up to 50 people a month.
And doing a great job of managing that, she said, by getting more volunteers to host smaller breakout rooms.
Of course, the AFTD has had its share of challenges this past year. Many of the AFTDs support groups are led by active caregivers and when everything closed, including adult day centers and other respite services, Moran-McCabe said, “that meant that some of them had to step away, because their role got so much more intense.”
More than a year has passed since virtual support groups started popping up across the country. And while life in many places is slowly returning to some semblance of normal — like going back into the office — virtual support groups are likely here to stay.
Truscott says, if anything, they’ll have some type of hybrid support, with both in-person and virtual options available to caregivers because the need is so great.
And for caregivers like Feldt, accessing support groups around the country is a lifeline in an otherwise isolating situation.
The Alzheimer's Association Helpline is available 24/7 at 800-272-3900.
Part III: Connecting Native American Caregivers From Across The U.S. By Phone
As we continue the conversation about how the pandemic has impacted caregivers and their ability to access support, we meet a Native American woman who is taking care of her mother living with dementia.
"OK, mother dearest, you ready to go for a walk?"
Meet Marcy Silas and her mom.
"My mom was diagnosed probably, going on eight years ago now," Silas said.
Silas’s mother has vascular dementia. The two live together on the Hopi Reservation in northern Arizona, which is a roughly four- to five-hour drive from Phoenix.
Silas participates in the Native American Caregiver Circle Group, through the Banner Alzheimer’s Institute.
But because of the pandemic this group has been meeting over the phone.
"It’s a good thing, but you don't see who's all there to participate," she said. "So you don't know your audience, I guess — If there's others from a different community, you don't know that, because sometimes people may not really say anything, either."
Silas has only joined a few calls so far.
"So, we started out using the phone because Wi-Fi or access to the internet is pretty, it's kind of hit or miss within these tribal communities," said Nicole Lomay, senior outreach program manager at Banner Alzheimer’s Institute.
Before COVID-19, Lomay’s would criss-cross the state, connecting with caregivers like Silas in person.
"Sometimes having a dialogue with people, it can be an uncomfortable conversation to have. But you know, when I go out and people get to know me, and they see me on a regular basis, I think that helps a lot," said Lomay.
Because the challenges facing Native American caregivers when it comes to that word — dementia — are very similar to those facing some Latino caregivers.
"There's definitely a stigma that's associated with it," she said.
But through her in-person outreach, Lomay says she’s seen a shift.
"I've heard from one community that said that, they are able to have an open discussion with their elders in their community, and they are able to define what Alzheimer's disease is. And they're willing to talk more about it."
Lomay says the Native American Caregiver Circle Group doesn't just serve tribes in Arizona. She says there are tribal members from across the country who are participating in calls.