Theme 1: Care Re-Organization
Shutdown or restrictions on operation of day care facilities	Dad used to commute [to the day care facility] himself, now he doesn’t leave the house alone… He had friends, he played cards, now he doesn’t… Male Informal Carer, 55, Son, Interview 20 Now we are divided into three groups, five-six people each. Our is 6 people. We are the artistic one. Generally, we are isolated.” Female, Person with dementia, 82, Interview 1
Access to medical help	I would like to be able to call the clinic, because the pharmacist said that my father was given the same drug twice, under different names. I would like to consult a psychiatrist, but it is impossible, the phone is still busy… Male Informal Carer, 55, Son, Interview 20 During the coronavirus pandemic access to doctors’ care is extremely reduced as well as treating patients with anything different from coronavirus. Female Informal Carer, 75, Wife, Interview 9 There are problems because you have to wait a long time for registration: for an appointment or a prescription. You have to wait 4–5 days for a prescription. It takes four days to get a call from the doctor. So, there are troubles. Female, Person with dementia, 76, Interview 4 And this telemedicine… maybe it doesn’t quite meet my expectations. Actually, they are mine and my husband’s. For example, when we have a cold, we want the doctor to see us, we want him to listen, to examine our throats, to take care of the patient. Female, Person with dementia, 70, Interview 5
Burden of care	When the pandemic broke out, the paid carer simply left, only me remained. I mean, the neighbours helped us and someone else from the family. But at this moment everything is on me. Male Informal Carer, 80, Husband, Interview 18 I was very burdened, I must say, both temporally and emotionally. Because I had to think about my household, to buy everything I needed, and about a household of my mother-in-law, because she did not always manage. It certainly had a negative impact on me, on my psyche as a carer… somehow negatively. Female Informal Carer, 60, Daughter-in-law, Interview 6
Theme 2: Psychological response
Uncertainty and anxiety	I felt that I would be burdened again. My sleep got worse and my GP gave me sleeping pills. Male Informal Carer, 55, Son, Interview 12 Now there is a relapse of this coronavirus. There are many cases. And the fear of going to the store, there it is. Female, Person with dementia, 70, Interview 5
Social isolation	I was better, but my husband [person with dementia] felt he was locked in the house. He thought we were infected. Because of the TV news… he interpreted it that way. Even later, when you [the psychiatrist] said not to broadcast the news over and over again. Because, unfortunately, my husband learned that if he doesn’t come out, it means he has the coronavirus. But it must be said that the husband was emotionally disturbed that he could not go outside. He didn’t want to get out of bed. He still doesn’t want to. He acts as if he was sick… Female Informal Carer, 80, wife, Interview 5 Well, we were stuck indoors, we were staring at these four walls… Female, Person with dementia, 70, Interview 5
Adaptation and coping	I don’t have negative [emotions]. I just had a task: not to let senior person to contact with other people. And I did it. Female Informal Carer, 58, Daughter, Interview 14 I very rarely went outside. If I went out, I would go out into the yard. Because I had such an opportunity that I could go out to my garden and sit, you know, in a nice surrounding. Female, Person with dementia, 75, Interview 3
Theme 3: Emerging needs
Institutional support	It would be very valuable if there were additional care at home, for example additional exercises, so that the father-in-law would start… Because I can see that it is getting harder and harder to get him out and lead to a bus stop. He feels so tired that I just drag him out. And I have no other choice, I don’t drive, my husband goes to work. So, I just bring him to my flat with just enough effort to keep an eye on him here. To keep him awake all the time, to exercise with him or something. A little bit of extra care at home would certainly come in handy. Informal Carer, 60 years old, daughter-in-law, Interview 6
Social support	Sometimes it happens that I have some moments of weakness, but my sister puts me upright, sometimes I put her upright and we support each other somehow. Female Informal Carer, 60, Daughter, Interview 17 I went to get a newspaper, something like that, but I wasn’t shopping. My children were doing it for me. I didn’t even cook because they brought me dinners. So, I had a luxury!” Female, Person with dementia, 82, Interview 1
Remote contacts	[Teleconsultations] are quite difficult to put into everyday practice, as, firstly, she is not fluent in it and moreover she does not like remote options. Male Informal Carer, 57, Son, Interview 8 We had more time for ourselves, more time for the garden. In fact, I missed Easter the most, so we spent our time at the laptop. We also shared eggs virtually for Easter. Reunited into three families. Well, we made it! Female Informal Carer, 77, Wife, Interview 19