Our results reflect the situation of elderly in primary care, living at home during the lockdown imposed on them by the Corona pandemic in Germany.
Knowledge about, and feelings related to the Corona-pandemic
The evidence shows that most elderly perceive their knowledge about the virus as sufficient, indicating that the public information policy was adequate. That is important as research has shown that lack of knowledge in quarantine is a risk factor for later negative health outcomes . In general, the cohort is modestly worried to not worried about themselves, their health or their relatives. Of note: None of those interviewed were infected themselves, only few knew others that had been infected. This fact might partly explain the low level of reported worries. Other explanations are also possible and may reflect aspects of age and life experience. Notes from semi-structured interviews accompanying the questionnaire can be interpreted in this light. Participants commented the situation as follows: “I am not afraid. I am 93, you can only die once! [Ich habe keine Angst, bin jetzt 93, einmal kann man nur sterben]” or “We have already lived through much worse situations [Wir haben schon Schlimmeres erlebt]“.
Nonetheless, agreement with the measures taken by the government was very high. It is unclear what drives this consensus. On the one hand, the active and transparent health communication adopted by policy makers might have contributed. On the other hand, generation-specific experiences or age-associated attitudes may have been beneficial. One participant explained it saying: “Queen Elizabeth has given courage and hope in her address [Queen Elizabeth hat in ihrer Ansprache Mut und Hoffnung gemacht]”, reflecting the, in the German media, well-publicized speech by Queen Elizabeth II on the April 5th.
Loneliness, depression and anxiety of people with cognitive impairment during lockdown
Participants of our study show levels of loneliness, anxiety and depression that are comparable to people in the general population – during “normal” times. In Germany, the prevalence of loneliness in the general population of 45-84 year olds is 9.2%, in the age group presented here it is between 7.5% and 8.1% . This is comparable to the 10.2% we found in our study. Loneliness being a rather stable construct may explain this result. A short-term isolation or restriction of social contacts with a clear cause and a foreseeable end might not influence the feeling of being lonely too much. It might worsen the state of people who are already lonely, but not make people lonely that were not lonely before.
Remarkably, depression and anxiety scores were lower than would be expected in the general population – outside of the pandemic. The prevalence of any anxiety disorder according to DSM-IV has been estimated to be around 10% in the general population . The prevalences in this study are much lower. The same holds for depression. The German population-based Leila75+ study showed a prevalence of depression in the 75+ year olds of 38.2% , the LIFE study with participants of the age from 18-80 a prevalence of 6.4 % . In our cohort, we assessed prevalence (11.4%) using a cutoff of 2 or more points on one item of the PHQ-2; this potentially even overestimates the true prevalence of depression in our cohort.
However, these results need interpretation. Prevalence data for Germany is population-based. Our study, on the other hand, is based on a convenience sample of people already participating in intervention trials. As such, a selection bias is possible in that people with a previous diagnosis of depression or anxiety disorders might not have participated in the original study. This notwithstanding, approximately half of the cohort showed single depressive symptoms at baseline. Comparing these to the pandemic results of the two PHQ-2 items “loss of interest or pleasure in activities” and “sadness” (in intersec-CM participants), our results imply that the pandemic did not impact symptoms of depression. (Only one participant showed a higher frequency than at baseline.) In fact, descriptively depressive symptoms before the baseline were shown to be more frequent than during the lockdown. Again, this may not reflect a real shift as all intersec-CM participants were initially recruited during an acute hospital stay. Summarizing, we can show that depressive symptoms are present in our cohort, but they do not seem to change by the Corona pandemic and the restrictions imposed.
Impact of the lockdown on frequency of social contacts, social activities and quality of health care provision
The level of social isolation in the general population of elderly in Germany has been reported to be around 13%, in the age group of 60+ up to 20% . Due to limitations of the telephone interview setting, we were only able to assess instrumental social support as a dimension of social isolation. On average, our cohort received medium to high levels of instrumental support even under lockdown-conditions and therefore cannot be considered isolated. We asked whether the frequency of pursuit in various social activities had changed due to the pandemic. On average the frequency did not change in six activities, one was pursued more and seven less often. (On average participants signaled that 10 of the 24 activities to choose from did not apply in their individual situation.) We can conclude that the level of social activities in the elderly in our cohort did not change significantly; restrictions in activities that are important to a given individual (especially those related to “staying in contact”) were, in fact, compensated during the lockdown.
Activities pursued less frequently after the lockdown are associated with activities that are difficult to perform under the conditions of social distancing. Participants met with other people less frequently, went out less frequently and visited social gatherings less frequently. However, the pandemic had a “positive effect” by increasing the frequency of talking to friends and relatives by phone, gardening or similar activities with less interpersonal contact. Thus, the elderly seem to find various ways to maintain social relations and stay in contact with their relatives and friends. Due to this, pandemic-related restrictions might not have direct and short-term consequences on measures of loneliness and social isolation. The elderly studied here – notable that they all suffered from impaired cognition– seem to retain sufficient resources to keep themselves active and socially connected, irrespective of the pandemic.
The strongest impact of the restrictions imposed on the elderly in our cohort were those referring to the provision and utilization of health care services. Our participants visited or were visited less by general physicians or other medical providers. They rated the provision of ambulatory services, day clinics and prescribed therapies as worse than before due to the pandemic. Especially the provision of services aiming at relief for caregivers was perceived to be worse. These results need further attention as a decrease in health care services may lead to significant long-term consequences.
We do not have any systematic information about the specific reasons participants rated the change in activity pursuit the way they did. From the semi-structured interviews, however, there is some indication that causes may be inter-individually quite diverse. For example, one participant explained that his prescription for a sleep apnea device was stopped “due to” Corona. Others reported that ambulatory care services reduced their services because of fear of infecting their clients or of becoming infected themselves. This had substantial consequences especially among partisipants with mobility restrictions (defined as needing help when shopping or simply aid when walking). A more in-depth qualitative assessment is needed here.
The health of elderly people, who can not utilize health care services for a certain period of time may be put at risk. This might be devastating for the German health care system. A decreased number of patients admitted to the hospital, GPs or specialists within the Corona-pandemic leads to lower income for health care providers in private practice and, in the short-term to lower health care expenditures. However, as a result of the non-use of health care services, there will probably be significantly more serious cases in the clinics in the future and more patients with severe pre-existing conditions. This will likely increase long-term treatment costs and can put considerabl strain on the health care system. Only in a few years, the full economic effects and consequences of the pandemic (i.e. high treatment costs and life-threatening diagnoses) can be assessed exactly.
Our data show that more attention must be focused on the needs of the caregivers. It is well documented that the burden of caregivers for people with cognitive impairment and dementia is often high and then is a risk factor for institutionalization [46-48]. Services aiming at relief for caregivers have been established to support caregivers and ease the situation for people living at home. With hindering and/ or closing these services over the pandemic the burden on caregivers will have increased. This is especially the case when caregivers need to compensate for professional services that are restricted or no longer provided during the pandemic. Thus, it is possible that caregiver health outcomes will be detrimentally affected. There is an urgent need to monitor this potential development and improve caregiver support wherever possible to alleviate the consequences.
There are clear limitations that restrict the generalizability of these results.
Our results are limited to cognitively impaired people in primary care living at home. The pandemic on i.e mortality of institutionalized elderly has been reported to be severe; the outbreak was associated with a very high mortality rate and high rates of positively tested residents of nursing homes . Isolating nursing home residents in their rooms is associated with morbidity and raises patient safety and staffing issues . The SARS-CoV-2 pandemic could also have lasting psychological impacts on care home staff . It is important that the necessary and appropriate support is provided. Nursing home care itself has been described as being “in crisis” because of the pandemic .
Results may look differently in regions with a higher infection rate than in the regions under investigation here. Participants were interviewed in the federal state of Mecklenburg-Western Pomerania, a rural state with the lowest infection rate in Germany, and in North-Rhine-Westphalia, a federal state with high infection rate and a higher population density. Thus, our results are more than regional results. However, samples from areas with high prevalence of Corona infection could be different. Further studies need to be conducted and compared to our results to get a more comprehensive picture of the impact and associated factors.
Our conclusions are based on data from a selective convenience sample from two ongoing intervention trials. The strengths of this sample are, that it was already recruited prior to the pandemic and direct contact was accessible during the pandemic The main advantage was, that prior information on patient characteristics, cognitive and psychological status was readily available. Furthermore, the participants had previously – due to the ongoing trials and contact therein – established a relationship with the interviewers, which might have increased the validity of the data and might have decreased social desirability in the answers. This is important, because there can be reluctance to report attitudes and to rate services. This is illustrated by a comment of one participant: “Is [this] a check-up call to make sure we stay at home and adhere to the rules? Do you cooperate with the police? [Ist das ein Kontrollanruf, ob wir zu Hause sind und die Maßnahmen einhalten. Arbeiten Sie mit der Polizei zusammen?]".
To our best knowledge, we are not aware of a comparable sample of people with cognitive impairments living at home examined during lockdown in Germany.
In this study, we focus on a generic list of health care services and a generic list of (social) activities, which makes it difficult to compare across studies. Nonetheless, we deemed the items relevant for this particular population and chose them for inclusion in our questionnaire based on expert opinions and other studies. Interviewing elderly people with cognitive impairments by phone results in limitations. Alertness and attention over time will be more prone to deterioration than in other cohorts. Therefore, we had to choose feasibility over comprehensiveness.