The impact of COVID-19 on the lives of community-dwelling people with dementia and informal carers in the context of using the social and medical services – a qualitative study

and A qualitative thematic analysis of semi-structured interviews with people with dementia (n = 5) and informal carers (n = 21) was performed. Interviews were collected between June and August 2020 via phone after the rst wave of COVID-19 in Poland. Data were analysed using NVivo software by four team members. overarching themes emerged: re-organization; Psychological responses; The factor underlying all these elements were a reliance on other people. Regardless type of support (informal a maintaining mutual as crucial


Background
From the end of 2019 until now, the world is struggling with the coronavirus Pandemic. By focusing effort to halt the spread of infection many social sectors have been relatively neglected (1)(2)(3). Although the various consequences of the Pandemic concern numerous social groups (4), they incommensurately affect older people who, as well as being most vulnerable to serious infection and its negative consequences, are most dependent on outside medical and social support (2,5,6). Among older adults a signi cant group affected by the coronavirus outbreak are people with dementia, who experience a wide range of intense caring needs irrespective of the current epidemiological situation (7). Supportive and predictable environments, feelings of being accompanied, receiving social help and obtaining medical consultation are crucial elements for people with dementia. They underpin a basic sense of security, prevent excessive disorientation and loss of sense of control. If these needs are not met, the disease progresses faster and the quality of life of people with dementia drops dramatically (3,6).
In Poland, in the face of insu cient system solutions and limited forms of institutional post-diagnostic support, this 'supportive environment' is usually created by the closest family of the person with dementia (8, 9). Caring for an older person with cognitive impairment is itself a considerable source of a distress (10). The Pandemic has intensi ed this psychological response further (11). Informal carers were left alone with their caring responsibilities due to the reduction of all forms of support they previously obtained (12). For informal carers who are professionally active, switching to remote work became their only means to provide their relatives with necessary care. The circumstances of the Pandemic has often resulted in informal carers spending more time with their relatives, which could potentially enrich their relationship (13,14). However, this also imposed additional caring responsibilities upon them (13). Higher pressure put on informal carers elevated their stress level and has negatively in uenced their overall psychological well-being. Those with lower levels of resilience were even more liable to experienced increase mental health symptoms, such as anxiety and depression (15). Although evidence highlights the negative consequences of the Pandemic on the informal carer's role, for others it reinforced their existing isolation from the mainstream society as a consequence of their caregiving role (16,17).
The aim of this study was to investigate the impact of the COVID-19 Pandemic on the lives of people with dementia and their informal carers in the context of using available social and medical services in Poland. Previous studies (11,16,18) provided insight into the Pandemic effects on selected aspects of the psychological functioning of people with dementia and their informal carers, but few related these phenomena directly to the issue of using care services during the Pandemic (19,20). Moreover, to date there is no evidence of the Pandemic's impact on those affected by dementia in Poland.

Study design
A qualitative design was applied in this study to investigate the impact of COVID-19 Pandemic on the lives of people with dementia and informal carers in the context of using social support and medical services.

Participants and recruitment
Informal carers aged 18 + who were caring a person with dementia and people with dementia (with capacity to consent and participate) accessing social care and/or social support services were enrolled in the study. Social care and social support services included: day care facilities, support groups, home rehabilitation, befriending services, visiting social worker, meal delivery, and home care. The participants were recruited via outpatient memory clinics and day care facilities in the city of Wroclaw, Poland (the 4th largest urban agglomeration in Poland with an estimated population of over 64 thousand) (21).

Data collection
Informal carers and people with dementia who were interested in taking part in the study were contacted by telephone and invited to participate in a semi-structured telephone interview, and consented if still willing. The interviews were conducted by psychologists and psychiatrists between June and August 2020, after the rst wave of COVID-19, when Pandemic restrictions in Poland were eased.
Semi-structured interviews were adapted from a parallel study conducted by  during April 2020 (19). A topic guide, containing questions about service use before and since the Covid-19 outbreak, was translated according to the WHO translation protocol (22), which included a forward translation, a panel of experts, back translation, pre-testing, and creation of the nal version (23). Each interview was audio-recorded, the mean interview length was M = 18 min (SD = 6 min 14 s).

Data analysis
Recorded interviews were transcribed into verbatim scripts by the research team members experienced in preparing materials for qualitative analyses. Prior to analysis, all transcripts were anonymized and proofread. Reviewing the transcripts for correctness was itself a stage of the authors' familiarization with the data. Four researchers analysed the data -three psychologists and one psychiatry resident. The transcripts were analysed by applying thematic analysis -both inductive and deductive (24) with regard to the main analytical question: 'What is the impact of Covid-19 Pandemic on the lives of people with dementia and informal carers in the context of using the dementia-related services?' Analyses were conducted separately for informal carers and for people with dementia.
At the rst stage, the most information-rich transcripts of interviews with informal carers and people with dementia were analysed independently by two researchers who developed initial codes (inductive analysis). In the discussion between researchers the codes were made uniform and gathered into codebook. Based on this jointly-developed codebook, the remaining material was analysed by one of the researchers (deductive analysis). Transcripts' coding was performed using NVivo software. Finally, researchers formulated themes from the coded data, with all authors, familiarised with the transcripts and codes, discussing the themes until agreement on them was reached.
The interviews, transcription and analysis were conducted in Polish. The results are reported in English.
All the quotes cited were subject to the back translation to ensure the correct transfer of meaning between languages.

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 speci ed (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.

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 bene ciaries 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 in uenced 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.

Discussion
The study highlights the impact of the Pandemic's public health restrictions on the lives of people with dementia and informal carers and adds to a developing evidence base on the detrimental impacts of COVID-19 and associated restrictions on the lives of some of the most vulnerable members of society and their informal carers (19,(25)(26)(27)(28). Results reveal various aspects of the pandemic's consequences on peoples' lives and changes in their care needs.
Coronavirus restrictions suspended the functioning of the majority of care services available in Poland (29). Results from this study show that both people with dementia and informal carers had to re-plan their care and switch to remote ways of using social and medical services. The sudden changes created a variety of psychological responses, such as emotional distress or helplessness. This started the adaptation to the critical situation (30). The challenges posed by the Pandemic additionally revealed support needs -both institutional and social -which were helpful for better adaptation to life with dementia under the Pandemic regime (31).
The actual changes in the functioning of the health and social care systems reported in this study are comparable to actions taken by governments of countries struggling with the novel coronavirus around the world (32). Prioritizing stemming the spread of the virus left dementia care needs behind. This negatively affected the mental and social well-being of people with dementia and those who support them (12,33). In Poland even before the Pandemic the dementia care system was not well organized and the major burden of care issues was left to informal carers (8, 9). As shown in our results, Pandemic restrictions added anti-virus protection tasks to their usual duties. Despite the extra effort put into caring, they considered the support offered was not su ciently stimulating for people with dementia. Consequently, informal carers reported elevated physical and psychological strain. This adverse trend, according to the observations conducted so far, has become a common experience of informal carers around the world, regardless of the care system operating in a given country (18,27,34). Pandemic-related changes in the caring responsibilities lowered informal carers overall well-being, both mental and physical (17) such as sleep disturbances, anxiety or depression (35). Moreover, it increased the risk of carer burnout (27). The intensity of these psychological reactions largely depended on intrapersonal factors such as their appraisal of the Pandemic risks and consequences and their ability to adopt coping strategies (30).
Among people with dementia, we also observed a burden, but of a different type. They felt trapped, isolated and totally dependent on other people. Talbot and Briggs (25) identi ed similar feelings referring them to the 'shrinking world' theory (36). COVID-19 escalated the dominant sensation following a dementia diagnosis, that the world of a person is narrowing. It deprived people with dementia of the social foothold and disrupted their regular activities, posing another loss (25). On the other hand, however, being restricted to the home may have offered relief from outside sources of anxiety and could prevent people from engaging with everyday activities (37). As a result people with dementia were deprived of the factors helping maintain their independence such as autonomy in dealing with everyday duties or not being treated by others in an overprotective manner (7,(38)(39)(40). Uncertainty around the coronavirus added to the loss of the sense of control (41) and adversely affected the overall well-being of people with dementia (42)(43)(44). Lack of environmental stimulation caused by Pandemic restrictions turned out to be a considerable accelerator of decline in emotional and cognitive functioning (19,45).
Research suggests a wide range of speci c neuropsychiatric symptoms which are mediated by this form of imposed, elongated social isolation. Among them there are mood alterations, apathy, anxiety, reduced motor activity, appetite, circadian rhythm changes and psychotic symptoms (42,44,(46)(47)(48)(49). In our study, it was the informal carers who reported changes in the functioning of people with dementia. They observed most of those neuropsychiatric symptoms noted elsewhere (42,44,46,50) and attributed them with the imposed social isolation and closures of social services. In the face of these adverse psychological and psychiatric consequences it is important to note that both people with dementia and informal carers are exposed to increased social isolation regardless of the Pandemic restrictions (16, 27,44). Ongoing crisis only heightens the risk of the negative effects of loneliness, thereby signalized the importance of social support in dementia care in general (42,51,52).
Despite the negative psychosocial consequences, our results show that people with dementia did not question public health guidance. This is in contrast to other studies highlighting the di culty of persuading people with dementia to comply with public safety measures (31,53,54). This may be related to the characteristics of the study sample. Participants showed no behavioral disturbances and were in the early stages of dementia, which might have positively in uenced their compliance due to increased levels of mental capacity and thus understanding the reasoning behind the need for public health measures (55).
The lack or the inadequacy of the support options reported in this study were associated with the transition to remote use of services and social contacts. In Poland, older adults, including people with dementia, are often alienated from technological progress (56), which caused di culties in bene tting from remote support provision (33,57), including social and medical care. To date, knowledge about and usage of telemedicine in Poland has been limited (58). Testing this solution suddenly and widely during the lockdown highlighted barriers to its successful implementation (29). Apart from technical di culties, the obstacle was the general reluctance of people with dementia to engage with remote contacts. As highlighted by other studies, people with dementia experience di culties in coping with lack of physical contacts and suffer its consequences (18,33). However, informal carers were more pro cient in digital media use. Though they could bene t from possibilities offered by technology -both organizationally and emotionally (59)(60)(61)

Conclusions
This appears to be the rst study highlighting the detrimental impact of COVID-19 Pandemic on the lives of people with dementia and informal carers in the context of using social and medical services in Poland. Findings contribute to an emerging evidence (19,31,33,42,51) base on the urgent needs in dementia care highlighting the importance of social support and pointing out the malicious effects of its deprivation. Considering the inadequate state of dementia care during the Pandemic, and the early consequences already noted in people with dementia and informal carers, ndings indicate an urgent requirement to fortify and extend social support and medical services to provide improved care for those affected by dementia, and their informal carers, especially in the light of the ongoing Pandemic. Despite vaccinations starting being rolled out in certain countries globally, the Pandemic will continue and services need to adapt exibly and urgently to prevent further rapid deterioration among this vulnerable group.

Declarations
Ethics approval and consent to participate The study was awarded ethical clearance from Wroclaw Medical University Ethics Committee (KB-366/220) prior to commencement, and was performed in accordance with the Declaration of Helsinki (65). Each interview was preceded by a recorded informed verbal consent of the participant.

Consent for publication
Not applicable.

Availability of data and materials
The data analysed during this study are included in this published article and its supplementary information les. The full transcripts of the interviews analysed in the study are available in Polish from the corresponding author on reasonable request.

Competing interests
The authors declare that they have no competing interests.  Figure 1