- •What is the primary question addressed by this study?The primary purpose of this study is to understand how dementia caregivers experienced online support services after switching to videoconferencing during the COVID-19 pandemic.
- •What is the main finding of this study?We found that dementia caregivers had high satisfaction with pre-pandemic services and continued to feel supported by services provided online. They also transitioned to telehealth services with little difficulty.
- •What is the meaning of the finding?Dementia caregivers are able to utilize and benefit from telehealth support services, and our findings suggest that telehealth is an advantageous means of securing support services during the pandemic and moving forward.
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- Vanelli M.
- Coope B
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- Pinquart M
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- Cohen G
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Theme 1: Experiences of Caregivers During COVID-19
Changes in level of support
“Well, what I really need right now is respite.” [chuckles] […] "I need a break, and you know people in the group are saying, 'why don't you hire someone?'” […] “I'm not letting anyone in here.” [chuckles] "I don't know where they've been, who they've come in contact with. […] But yet, I need help desperately.”
“I wish there were eight days in the week. I don't have enough time to do everything that I have to do because I am the only one.”
“All of our doctors are on 34th Street […] and that's a big problem because, at this point, I am very uncomfortable taking any kind of mode of transportation – definitely not subways, which was a perfect mode of transportation for us. Buses – out of the question.”
“[Before the pandemic] He had his group, and I was able to […] just stay there to relax. And I enjoyed talking to the other caregivers. I mean, I feel like I made connections with these, these people. And I miss them in many respects.”
“I suspect being in isolation makes it difficult…more difficult for her because I think she responds to social stimulation, you know, she's more alert and alive. […] So I think the isolation contributes [to negative outcomes]”
Changes in the relationship with the PWD
“Of course, [COVID] affects our relationship and we go through periods of time when there's more anger, more on my part, struggle, obstinacy or stubbornness on her part or inability to respond. And we go through periods of time when we're warm and affectionate."
“We're really together, so I have to, and she has to, figure out ways of getting along.”
“I'm much more aware of his fragility and then the fragility of our future and of the need to be very protective of him. […] I think it just generally made me more caring and nurturing of him.”
Caregiver stress due to differences in perception of the pandemic
“I have to explain to him about the pandemic. I tell him it's worldwide and we are on a mandatory lockdown and if we go out, we must wear a mask, otherwise, we'll be fined. So, when we do get out, and I point out, I point out everyone who is wearing a mask. And sort of like to reinforce what I told him. But, of course, he doesn't remember from day to day”
“In some ways, I'm angry with him because he doesn't get it that we are living in a different environment.”
Benefits and silver linings
“And it was […] the hour-long Zoom party, that had it not been for COVID, I would not have been invited to the party. It would've been for young people ‘cause they're all around 40. This way, I got invited, and I got such satisfaction in seeing all these lovely young people from the past.”
"My daughter and granddaughters in Texas, for example. I now see them once a week, whereas I never, never would have before."
“Every time we went out for some activity […], it was such a stressful, exhausting, physically exhausting, stressful experience. We don't have to do it anymore and I'm almost really glad that we can't go out.”
“Overall, it hasn't been negative. The way I see it is our life has been surreal since we've been dealing with dementia. And now, it feels like everybody's life is surreal. So, it's like everybody has joined us; this surreal world. So, in a way, there's some comfort in that, which is kind of bizarre, but I do feel like everybody is kind of in our reality now.”
Theme 2: Caregiver Response to the FSP During COVID-19
General responses about the FSP
“It's extremely helpful in terms of a place to ventilate, talk about problems, get very good feedback, get emotional support, get cognitive support, and feel that I belong to someplace where people understand what my situation is.”
“It was an outlet for all this fear, anger, anxiety that I have. I don't know where else I could get rid of it.”
Online support groups
“We connected […] even more now that we're doing Zoom than before…in a way that we started telling more of our personal stories. … We know more about each other not just as caregivers but as people… So, I think in some bizarre way, this whole COVID experience has enriched our togetherness and our support for each other.”
“[during COVID-19] we shared the [phone] numbers realizing that it would be really helpful to all of us to know that we are there for each other not only on Thursday afternoon but other times also. I think that has been a very, very positive side.”
“Not getting the physical aspect of the group – we would hug each other or there was a closeness that you can't quite just duplicate online. But it's working, so I'm happy about that.”
“I know this is inevitable with the Zoom technology but sometimes it's hard when our number is as much as 8 or 9 or 7 or 8...Very often, we're talking on top of each other, whereas in person, we defer to each other.”
Suggestions for additional offerings by the FSP
- Appleman ER
- O'Connor MK
- Rockefeller W
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