Impact of Social Isolation on People with Dementia and Their Family Caregivers

INTRODUCTION

COVID-19, the disease caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), is currently the biggest health challenge worldwide. In Latin America, by the beginning of February 2021, there had been more than 19 million confirmed cases and more than 600,000 deaths [1].

Knowledge about the virus is still limited, but social isolation seems to be an effective strategy for controlling outbreaks of COVID-19 [2]. For this reason, physical distancing measures have been implemented in many countries, as a way to contain the speed of viral transmission, reduce the chances that healthcare systems could collapse and diminish mortality.

Social distancing can reduce disease transmission, which is important for controlling the spread of this virus. However, it can cause a series of clinical and psychological problems, since it increases the possibility that cognitive, cardiovascular, and autoimmune changes might develop, along with depression and anxiety [3–7].

People with dementia and their family caregivers, whose daily lives already entail the hardships that dementia imposes, may suffer even more through social isolation. People with dementia may find it difficult to understand and adapt to changes in their routines, as well as not remembering the preventive care that they need to take. They may therefore be at greater risk of contracting COVID-19 infection [8]. This scenario also has the potential to cause them to exhibit behavioral changes, which may lead to or exacerbate symptoms such as anxiety, agitation, aggressiveness, irritability, and sleep disorders, among others. Family caregivers may likewise be impacted by the changes in routine imposed through social isolation, which can result in greater burdens and negative repercussions on their mental health [9].

There is little published information about how people with dementia and their family caregivers are coping with the pandemic and isolation, particularly in relation to low- and middle-income countries. In just a few studies, especially from Europe, increased symptoms of agitation and anxiety among individuals diagnosed with dementia have been reported, in addition to an increased burden on family caregivers during this period [21, 22].

Data from around the world is beginning to emerge in the literature, but information remains very scarce, especially in relation to countries that have low investment in healthcare services. Therefore, there is a continuing need to evaluate how social isolation can affect the lives of individuals diagnosed with dementia, in order to develop possible assistance strategies in this period and in other contexts of confinement that may arise in the future.

METHODS

RESULTS

DISCUSSION

The present study investigated the impact of social isolation due to the SARS-CoV-2 pandemic on individuals with dementia and their family caregivers. The findings, although based on the perceptions of caregivers, suggest that both for people with dementia and their caregivers, the pandemic and social distancing have had a major effect and have triggered a series of behavioral, emotional, and physical consequences. To date, we are not aware of any other study that has assessed the impact of social isolation using data from three South American countries.

More than half of our sample of patients showed worsening of memory, according to the caregivers’ reports, especially among individuals with moderate to severe dementia. Other studies have already shown that older people who were more socially isolated also had greater memory impairment and have suggested that the association between social isolation and memory decline is driven by the effect of social isolation on memory, and not the other way around [12–14].

Most individuals with dementia already have difficulties in remembering routine procedures and understanding the environment around them, as well as remembering the hygiene and self-care procedures needed at this stage [15]. Hence, the cognitive worsening observed in our sample should serve as an alert for all professionals involved with care of these individuals.

Closer monitoring and assessment of possible needs that arise during this period are essential, given that greater impairment of memory can further increase these individuals’ risk of becoming infected with SARS-CoV-2. This is precisely because they do not remember and understand the important procedures that need to be followed in order to avoid this exposure [8]. In addition, this impairment of memory can compromise correct use of medication among individuals who have less cognitive impairment and are still able to organize and administer their own medication [9].

Several behavioral and psychological changes due to deprivation or reduced social contact during the pandemic period have also been reported, such as increased anxiety, agitation, and depression [16–18]. However, few studies have addressed these impacts on the population with dementia [19–21]. A recent study conducted in Italy evaluated neuropsychiatric changes among individuals with dementia and their caregivers during the lockdown period and found that there had been large increases in complaints of these symptoms in about two-thirds of both the patients and the caregivers [22].

We also found changes in anxiety symptoms and increased sadness and sleep disturbances in about one third of the people with dementia, which has also been found in previous studies. This confirms that this period can lead to various feelings of distress and symptoms of stress among these subjects. Our study also showed that the increase in anxiety was greater among individuals with mild to moderate dementia and that the symptoms of agitation worsened in those with severe dementia. Other studies have also shown that the absence of contact with other people and the restriction to home contribute to increased appearance of neuropsychiatric disorders and, in addition, increase the risk of morbidity and mortality [23, 24].

The functional performance of the people with dementia in our study sample also suffered notable impairment. Increased inactivity and reduced activity levels due to social isolation have also been found in other studies [25, 26]. During this isolation period, most cognitive and physical stimulation programs, such as physiotherapy, occupational therapy, and other individual and collective activities, were totally or partially interrupted, which may have contributed to functional impairment [8, 9, 20, 27].

In relation to the family caregivers, we found that there had been increases in the frequency of symptoms of tiredness, sadness, irritability, and nervousness and that their workload had increased, such that they were spending more time on care. This was especially the case for caregivers of people with moderate and severe dementia. Previous studies reported that these caregivers were already suffering overload relating to emotional stress, sleep disorders, and higher risk of mental disorders [28–30]. Our study suggests that this burden may have been even greater during this period and was also influenced by the severity of dementia, thus causing major consequences regarding the physical and emotional state of caregivers.

Assessment of the diverse needs of family caregivers and guidance for them should be widely dis-seminated, in order to improve management at home and to alleviate the workload and stress [31]. As recommended by Alzheimer’s Disease International, support for people living with dementia and their caregivers is paramount. In addition to physical protection against becoming infected with the virus, psychosocial, physical, and mental support needs to be offered to these individuals [32].

The present study had some limitations. It included a convenience sample, and, in addition, the interviews had to be carried out by telephone, since face-to-face meetings were not allowed, due to the pandemic situation. The interviews may have been influenced by the emotional state of each caregiver on the day of the survey. Moreover, the cross-sectional design of the study made it impossible to know the effects of isolation over time. Another limitation was that the study was carried out in three countries that were experiencing different moments of the pandemic. Despite this, social isolation was recommended in all three countries at the time of the survey. Finally, the FAST has been proposed as an instrument to assess severity of dementia in Alzheimer’s disease and in the present study only dementia syndrome was considered, without further analyzes related to etiology.

Social isolation during the COVID-19 pandemic is causing significant impairment of memory, behavior, and activities of daily living among people with dementia. Management of these problems may have become even more difficult during this period, since there was discontinuity of care for most individuals. In addition, the prognosis for these individuals’ dementia also needs to be evaluated or re-evaluated, because we do not know whether these changes will be reversible. Our research also showed that family caregivers’ workload and emotional stress increased significantly.

Adaptation of the services that offer support for people with dementia and their caregivers is ex-tremely necessary, especially during this period. Specific assessment of the effects caused by social distancing on an individual basis is essential, along with planning that includes the entire multidisciplinary health team involved with the care of these individuals [33].

Communication technologies can benefit and facilitate the approach to these people, although not all of them have access to this resource and some do not have the minimum ability to use them. Virtual consultations and use of cameras can be useful tools for monitoring and clinical management, with the aim of mitigating the impact of social isolation without exposing these people to an increased risk of SARS-CoV-2 infection [34].

Further studies within this older adult population are needed, to elucidate the effects caused by social isolation due to the COVID-19 pandemic and to propose strategies for other similar periods that may arise in the future. In addition, it is necessary to create strategies for the return of these individuals to their usual activities whenever possible, and for their healthcare follow-up, so that their personal needs can be better faced.