Participants described the negative impact the pandemic had in their care, especially the limited functioning of the day-care centre; this was closed for three months, following the first lockdown (March 2020), though its staff made their best to stay remotely in-touch with users:
“Everyone was isolated, and we kept contact with patients through video-call.” [D7]
“(…) we started to work online a lot (…). We were able to reach patients, either by phone or video-call.” [H1]
Nevertheless, lockdowns made patients feel “shut” at home; the first lockdown was particularly difficult due to its unexpectedness: the first days of lockdown were very hard” [P5]. One family member acknowledged the importance of the day-care centre: “(…) we had to stay home and believe me; I really missed the centre. I feel a lot of support from them” [F1]. Lack of social interaction, routine leisure activities and physical stimulation for patients were of great concern, with impact on disease progression:
“Outdoor activities, like lunches, picnics, didn’t happened in the last two years. I also noticed a big difference in symptoms, some worsened a lot.” [D6]
“We see a big difference in disease progression. With less stimulation they [patients] are more monotonous. They stayed more at home, and for them it was brutal.” [H1]
Patients described how limited access to the day-care centre made them feel more isolated:
“It was like staying at home weeks and weeks in a row… it was hard. At home, I just sit around. At the association, I had more things to do, it is much better.” [P14]
“At home, I'm always in bed (…). My wife must leave to work, and I stay alone” [P16].
Healthcare professionals and day-care workers also described how these circumstances negatively impacted patients’ wellbeing and mental health:
“I think they are more anxious and depressed. I feel they are shyer, more closed off… which makes them even more dependent.” [H2]
“Many of them sank. They lost weight, got weaker, and sadder. When we got back, they were down, further weakened.” [D7]
The day-care centre adapted its routines to accommodate public-health recommendations:
“We organised patients into two smaller groups, so that less people come each time, to avoid outbreaks. They are now coming only once-a-week, they used to come twice-a-week and groups were larger.” [D7]