Table 1 Overview of quotes by theme and sub-theme
THEME 1: Limited access and support | |
Sudden lack of care | “We felt a bit abandoned because we couldn’t do it anymore [going to the Alzheimer café], it took off that part which stimulated my mum, so we all found ourselves a bit unprepared, honestly ...” Italy ID05, Female Carer, daughter “Well, maybe it’s cruel, thanks to COVID and the fact that I worked remotely, for example, I had more time to take care of my mother directly. The care of our private carer was more limited.” Poland ID03, Female carer, daughter “Except that I don’t get the breaks that I was, I was able to get, you know coz my services closed down, too, which with everything else. So, it’s very hard for me to get respite now. Because respite means trying to distance myself from my mom and it means I have to find somewhere to go. So, for quite some time the only place I could go into table can sit by the river for a couple of hours, but there’s nowhere else I could go. So yeah, it’s had a negative impact on me too.” Australia, Female carer, daughter |
Different impacts on paid home care staff | „they’re booted and suited as they say; they’ve got gowns, masks, aprons and they’re all going through the they can’t do social distancing because it’s impossible if they’re changing my wife or or dressing her social distancing is not possible or practice but they do their best, they do their best.” UK ID25, Male carer, Spouse “When the pandemic broke out, the private caregiver simply left, only me remained. I mean, the neighbors helped us and someone else from the family. But at this moment everything is on me.” Poland ID18, Male carer, Spouse “I also had to hire a private caregiver, since before the pandemic she was 4/5 days a week out of home, and now she is at home all day long, I had difficulties and I needed an external support…otherwise the burden was too heavy.” Italy ID17, female carer, 62y, daughter |
Medical support over social care | „During the coronavirus pandemic access to doctors’ care is extremely reduces as well as treating patients with anything different from coronavirus” Poland ID09, Female carer, Spouse „After the corona outburst we didn’t face so many changes and problems. During lockdown there was difficulty to buy medicines. But we adjusted. Now there are no more difficulties. We spend most of the time in our house and farmland.” India ID01, Male carer, Spouse “the pandemic brought many difficulties with it …It was hard to go to the doctor, even to call him, and every scheduled exam, after months of waiting, has been cancelled.” Italy ID21, Female carer, daughter |
Cultural adaptations to dementia care | „We know about different types of services like day care centres, palliative care centres etc. But we have no such services nearby our home. We didn’t experience any major changes as we are taking care of mother. There is no external help used.” India ID03, Male carer, Son „After corona outburst, I (son) take care of mother because other two children who are in abroad can’t come and visit mother. It makes mother sad otherwise there is no big deal.” India ID07, Male carer, Son |
THEME 2: Technology and issues accessing remote support | |
Remote digital support a helpline | „it was disconcerting to start with because [...] everything just collapsed overnight. Literally overnight. And I found that a bit depressing, I though well what am I going to do now. But with with things like Zoom and Skype and of course the good old telephone, especially Skype and Zoom because it’s visual, you can interact with the people you’re seeing them it’s not just audible. I found that extremely helpful.” UK ID08, Male person living with dementia ‘Concerning the video-call, it was helpful to break the routine, since a new person entered the house, even with a call. This was a respite.. My mother was apathetic before. 2 h a week were not that much, but at least it was something different. My mother had a different expression, she seemed at peace.’ Italy ID02, female carer, daughter “Not too much for him, but for me the Dementia Australia meetings went to go online. But there is a set time, and the bottom line is that - Is something else is happening? You can’t participate in them and secondly, while their online you’ve got to make certain that the person that you’re caring for if they are not actively engaged, what do they actually up too? And if something is said by another person, that could be construed as upsetting, then you got to do with the person becoming agitated. You know you’ve got no right to say that or whatever. So, I just found them not satisfactory at all.” Australia, Female Carer, Spouse |
No replacement of face-to-face support | “Nothing can replace contact with other people” Poland ID16, Female carer, Daughter “there isn’t that kind of human involvement that allows to better involve people, instead, seen on the phone ... they’re very good but it’s not that human contact that brings you to the attention ... and after a while she got tired” Italy ID01, Female Carer, daughter „I have 3 days a week where I can sleep to be perfectly honest I don’t do an awful lot when he’s out there I rest, I rest and I read a book. I look at the television programmes that I want to look at that I can’t look at because he’s talking all the way through them, then I read. I’m not allowed to read when he’s here because he just he won’t let me he wants my attention. I devote, not that I’m complaining, but I devote all my time to him and now he is incontinent as well so I have that to deal with. I’m not complaining don’t get me wrong. [...] I take him to to this place where they’re I leave him there and I trust these people, you have to have somewhere where you can trust them.” UK ID34, Female carer, spouse |
Difficulties accessing technology | „[Tele-consultations are] quite difficult to put into everyday practice, as, firstly, she is not fluent in it and moreover she does not like remote options” Poland ID08, Male Carer, son „We had some issues with technology…about internet connection and getting familiar with new devices. Switching from physical buttons to the touchscreen was a big challenge for my parent. It can be easy for us, but it is quite difficult for her to adapt to it” Italy ID21, female carer, daughter |
THEME 3: Emotional impact of the pandemic | |
Upset about restrictions and concern over virus transmission | „The father is not the one who sits at home, so he gets irritated when asked to sit at home during the lockdown. We have difficulty to handle him during lockdown.” India ID14, Male carer, son “As we were closed and not able to meet with others, it just felt like prison. It was hard to handle.” Poland ID01, Female person with dementia “Now due to Covid I’m afraid of being infected, so I withdraw into myself, I isolate because I have to protect my mum as much as possible.” Italy ID12, Female carer, Daughter |
Carer burden | “I’m psychologically overwhelmed and I need to breathe some air, I really feel the need to go out, to walk with my legs at a fast pace, I need to get some air, then there is also the psychological burden of anxiety because of this virus, as you experience fear, distress of getting sick ... “ Italy ID04, Female carer, daughter „And I was a little bit frustrated, not with the fact that the services weren’t there, but this trying to get her to understand was a bit frustrating. I think… just trying to get her to understand why the things were cancelled and she was OK, but she didn’t quite get it obviously.” Australia, Female Carer, Daughter |
THEME 4: Deterioration of cognitive and physical health | |
Faster deterioration of dementia symptoms | „So because he can’t go out and he can’t walk that’s impacting on his arthritis but its also impacting on his breathing because he’s not exercising his lungs and also of course then the impact on his mental health because of his Alzheimer’s he’s not getting the stimulation that he needs and so therefor he’s becoming more confused, he’s becoming less verbal, he’s losing words a lot quicker than he was and I think when lockdown eventually comes to an end and he can actually go and access groups he won’t be the same man that he was when he first finished those groups. He’ll have deteriorated so much.” UK ID38, Female carer, daughter „I was quite worried and quite as it turns out, quite rightly so. I could see her retreating mentally and physically.” Australia, Female carer, daughter „Since we have not utilised those service even before corona breakdown closing these centres has not affected us in a significant way. There are no major changes in the condition before and after the lockdown.” India ID13, female carer, daughter-in-law “In my opinion, yes, it affected her because she’s now slower than before, she has fewer interests and spends a lot of time in front of the television that she used to do without, and now she watches a lot and, in my opinion, you become very apathetic in front of TV” Italy ID18, Female carer, daughter “I can appreciate the importance of this facility now that she is not there, we have to take care of Mom interchangeably with our sister, but although we try, there is a difference. Mom forgets, she doesn’t want to go anywhere, she sleeps a lot, as if she was thinking more slowly.” Poland ID01, Female carer, daughter |
Impact on physical health | “Once she stopped going out, I could see her ability to be mobile diminishing and that will have a severe impact on the quality of life. And probably the same thing would have with my father once he stopped going to the gym. The wastage in his legs is a lot shakier and not nearly as mobile as he was. And mentally he’s withdrawn more. I think he’s probably a little depressed. Not that he would admit it, but I’m pretty sure he is.” Australia, Female carer, daughter „Her independence is more and more limited. Moreover, such situations of reduced activity, staying home, giving up and sort of communication via watching television, accelerates her anxiety” Poland ID08, Male carer, Son ‘The situation has changed a bit for what concerns my mum’s autonomous movements…she was able to walk alone before, now we are using a rollator as she has not the same stability anymore…but I don’t know if it is lockdown related or just the natural course of the disease’ Italy, ID05, female carer, daughter |