Participant demographics
We completed 26 semi-structured interviews with informal carers (n = 21) and people with dementia (n = 5). Most participants were female (65%). The majority of informal carers (62%) were living with the people with dementia and were adult children (71%). Dementia subtypes included: Alzheimer’s disease (39%) mixed dementia (31%), vascular dementia (15%) dementia in Parkinson’s disease (4%) and dementia not further specified (12%). The mean age of people with dementia was 81 years old with their average period of education consisting of 13 years. Participant demographics are summarised in Table 1.
Table 1
Demographic characteristics of people living with dementia and informal carers
N (%) | INFORMAL CARERS (n = 21) | PEOPLE WITH DEMENTIA (n = 5) | Total sample (n = 26) |
Gender | | | |
Female | 13 (61.9%) | 4 (80%) | 17 (65.4%) |
Male | 8 (38.1%) | 1 (20%) | 9 (34.6%) |
Relationship with PLWD | | | |
Spouse | 6 (28.6%) | - | - |
Adult child | 15 (71.4%) | - | - |
Living with PLWD | | | |
Yes | 13 (61.9%) | - | - |
No | 8 (38.1%) | - | - |
Dementia subtype | | | |
Alzheimer’s disease | 8 (38.1%) | 2 (40%) | 10 (38.5%) |
Mixed dementia | 6 (28.6%) | 2 (40%) | 8 (30.8%) |
Vascular dementia | 4 (19%) | 0 (0%) | 4 (15.4%) |
Not specified | 2 (9.5%) | 1 (20%) | 3 (11.5%) |
Dementia in Parkinson disease | 1 (4.8%) | 0 (0%) | 1 (3.8%) |
Mean (SD), [Range] | | | |
Age | * 81.5 (+/-4.7) [75–85] ** 63.1 (+/-9.9) [52–80] | 78 (+/- 6.6) [70–87] | 80.8 (+/- 5.14) [70–87] |
Years of education | 12.9 (+/- 2.92) [9–17] | 10.8 (+/-1.64) [9–12] | 12.5 (+/- 2.82) [9–17] |
* Age of people with dementia living with/cared for by informal carers; ** Age of informal carers
Qualitative themes
Thematic analysis resulted in three main themes with several sub-themes. Themes were common between informal carers and people with dementia: (1) Care re-organization; (2) Psychological response; (3) Emerging needs. Arrangement of the themes and sub-themes is illustrated in Fig. 1. Only the most representative quotes are presented in the text. More examples are available in Additional file 1.
Figure 1. Themes and sub-themes
Theme 1: Care re-organization
Restrictions imposed due to the Pandemic outbreak caused significant changes in the organization of care for people with dementia. To avoid contact with potential virus carriers people with dementia withdrew from most of their daily activities, including attendance at day care facilities. Consequently, informal carers were tasked with providing intensified care to their relatives. These changes gave rise to various personal responses to the Covid-19 situation.
Burden of care
Facing service closures and for fear of exposing older adults to the virus, many informal carers decided to strictly limit the number of contacts for their relatives. The duty of care usually fell on the closest person (children or a spouse) who could not count on any replacement or respite care resources. Participants underlined that it was a substantial organizational and emotional burden.
If the carer has an institution where parents spend their time and suddenly this institution closes, then it has a negative effect on their organization of life, right?
Female Informal Care, 58, Daughter, Interview 16
My daughter always said: 'Mum, you are going out - don't go out!' So as to avoid this event.
Female, Person with dementia, 70, Interview 5
Shutdown or restrictions on operation of day care facilities
Differences in care organization during the Pandemic were especially noticeable to those participants who were beneficiaries of social care facilities before. Day-to-day activities in a peer-group and professional support turned out to be priceless and indispensable. Lack of regular schedule, hours spent alone and restrictions to their own home were distressing for people with dementia and also influenced informal carers. They became unable to divide their care responsibilities and were worried that they would not provide enough cognitive, social and physical stimulation to their relatives.
What I felt when the closed the day care facility? It was stress. And it still is. We had to organize something that worked well again. I didn't know when it would end, how we should work with mum, so that what was achieved in Senior Plus [daily care home] wouldn't be wasted. We share the care with our sister, but it can be difficult.
Female Informal Carer, 65, Daughter, Interview 7
As we were closed and not able to meet with others, it just felt like prison. It was hard to handle.
Female, Person with dementia, 82, Interview 1
Access to medical help
Participants unanimously emphasized that COVID-19 had become a priority for the entire healthcare system with other medical conditions sidelined. As a result, access to medical care was often challenging, especially for people with dementia and other comorbidities. Interviewees pointed to the barriers in accessing teleconsultations, which included waiting queues. Older adults highlighted the importance of a doctor’s physical examination. The lack of it caused uncertainty about diagnosis and a sense of a decrease in the quality of care. Nevertheless, some participants were satisfied with telemedical solutions. This was largely dependent on the dedication of medical personnel in each facility.
I haven't had any revolution in my life because there are telephones and I could always call for help and ask. We also have clinics here, the health care team, which is very dynamic. They are even so determined to help patients that they took us in during a pandemic when my husband's blood sugar was too high.
Female Informal Carer, 77, Wife, Interview 19
I wish the access to medical care was better.
Female, Person with dementia, 76, Interview 4
Theme 2: Psychological response
Changes in organization of everyday life and unknown, unpredictable situations, initiated the process of adaptation to changed life circumstances. This process triggered different emotional reactions in informal carers and people with dementia and resulted in various attitudes and individual consequences – from difficulties in adapting to the situation to implementing positive coping strategies.
Uncertainty and anxiety
Participants experienced many negative emotions evoked by the Pandemic crisis. Fear of being infected combined with the additional caring duties or self-isolation resulted in an apparent decline of respondents’ mental health. Informal carers reported increased levels of distress related mostly to their concerns about their relative with dementia. For people with dementia pressure to stay at home increased their sense of helplessness, lack of agency and anxiety.
„It was very sad. I was lying on my bed and staring at the wall. Every day. How many people died and where? It was very sad. It lasted for so long.”
Female Informal Carer, 58, Daughter in-law, Interview 10
Well, I got a little stressed [with the lockdown], because it is a kind of burden. If I need something, some help, there is no way to get it. If I call a doctor, it is also impossible to get to him. And it's even hard to get a prescription.
Female, Person with dementia, 76, Interview 4
Loneliness
Physical distancing did not only impact on the organizational aspects of life. It also brought on the emotional void and intensified the sense of loneliness, which particularly affected older adults. Informal carers felt powerless in the face of the adverse consequences of social isolation on their relatives. They were observing apprehensively the decline in overall functioning of people with dementia including cognitive skills, emotional well-being and physical functioning. They were concerned whether people with dementia would ever be able to return to the pre-Pandemic levels of mental and physical health.
Literally, very soon after the day care facility was closed, my mother started to deteriorate in her health, especially the mental one. Her behaviours started to change, a lot of problems grew and for me it was a very big problem. I had to hire a private carer very quickly.”
Female Informal Carer, 58, Daughter, Interview 1
I am used to being lonely. Even before that virus I lived a life of a lonely person as I had been caring for my wife for 25 years.
Male, Person with dementia, 87, Interview 2
Acceptance
Although the Covid-19 Pandemic negatively influenced many aspects of functioning, some people were able to adapt to the new circumstances. Their capacity for maintaining a mental balance depended on the adoption of positive coping strategies. Emotion-focused or problem-focused strategies seemed to be the most effective in positive passing through the adaptation process. It was notable the extent to which people with dementia adjusted to the sanitary recommendations and accepted imposed requirements.
I don’t mind wearing masks if it’s required
Male, Person with dementia, 87, Interview 2
If it weren't for the optimism, we couldn't deal with such problems.
Female Carer, Interview 9
Theme 3: Emerging needs
Pandemic-related changes and the process of adjusting to the new reality revealed important needs for people with dementia and informal carers. Participants indicated what was helpful in coping with the Pandemic situation, and what was missing but would be valuable.
Institutional support
Respondents claimed that institutional support during the Pandemic was not sufficient and often did not meet their expectations. Help from the welfare office or personnel of day care facilities was either absent or not adequate. Most of the informal carers had to organize everything themselves. Those who received some institutional support highly appreciated it.
Regarding the psychosocial interventions, unfortunately it was very poor. It is true that from time to time, personnel [of daily care home] sent some links to on-line exercises, but my mother cannot use it. She can’t handle something like that, so it was unfortunately useless for her.
Male Informal Carer, 58, Son, Interview 15
Social support
Irrespective of institutional support, participants emphasized the indispensable importance of social support. Regardless of whether it was family, friends or neighbours – any support from others prevented people with dementia and informal carers from feeling left alone. Perception of other people’s willingness to help was a vital factor influencing experience of the Pandemic period, notably reducing negative emotions.
Of course, we are supported by friends and family. It would be hard without it. Or even hopeless.
Female Informal Carer, 77, Wife, Interview 19
I have had thoughts how it's going to be like and if I can handle it. But what turns out is that there are people who remember me. And they help. And this is very important for me. And that's what they tell me: if you needed help, we would help you, just tell us.
Female, Person with dementia, 75, Interview 3
Remote contacts
Informal carers appreciated online forms of communication. For them it was a useful medium of connecting with people in a time of social distancing. The Internet (social media, on-line support groups) allowed them to receive information about providing dementia support and reduced loneliness. However remote forms of communication did not satisfy the needs of people with dementia. Engaging in remote communication was considered too technically challenging and did not offer emotional closeness to another person.
It [on-line support for carers via communicators such as Zoom, Skype] is important. Because if there is no direct possibility, then you just have to look for a solution and undoubtedly some social media or some platforms that allow you to contact, (and see another person, because it is the human face that has the power), it is important. It is a form that may not be perfect, but it is good enough to be used.
Female Informal Carer, 60, Daughter, Interview 17
„These teleconsultations… well, maybe they don't quite meet my expectations. Actually, mine and my husband's. Because we have a cold, for example, we want the doctor to see us, but to auscultate the throat, to take care of the patient in such a professional way.”
Female, Person with dementia, 70, Interview 5