Damian Sendler: People with dementia and those who care for them must be given immediate attention as the pandemic spreads. Dementia patients and their caregivers are in a precarious position due to a lack of resources. In order to reduce mortality and provide assistance to those suffering from dementia during the pandemic, cooperation and more research based on solid evidence are essential.
Damian Jacob Sendler: As a result of the current coronavirus disease (COVID-19, caused by the SARS-CoV-2 virus), a large number of people living with dementia are at increased risk of illness and death. Most people who die as a result of COVID-19 (O’Brien et al., 2020) have dementia as a co-morbidity. Long-term care facilities in Canada account for 85 percent of all COVID-19 deaths, with two-thirds of those afflicted by dementia (Alzheimer’s Disease International 2020b; Suárez-González et al. 2020). People with dementia accounted for half of the deaths in care homes in the UK, according to the Office for National Statistics (ONS) (Alzheimer’s Society 2020).
Dr. Sendler: A number of countries have implemented social distancing restrictions and lockdown measures in response to COVID-19, in an effort to reduce the virus’s spread. Restrictions on social gatherings, limited mobility outside the home, and restrictions or closures of all non-essential services such as home care and health clinic access have been implemented (Brown et al. 2020). People with dementia and their caregivers, on the other hand, are suffering as a result of these “protective” measures (Anderson and Parmar 2020; McGhan and McCaughey 2020).
People with dementia are at greater risk from COVID-19 and social isolation if they don’t have access to social support and healthcare services. According to research, social isolation has been linked to an increased risk of early death from all causes (National Academies of Sciences, Engineering, and Medicine 2020). Dementia and Alzheimer’s disease deaths at home in England have increased by 79.3% over the previous 5-year average during the pandemic (Office for National Statistics 2020). There may be additional deaths from the pandemic that are not directly related to missed COVID-19 diagnoses (e.g., misattribution of COVID-19 deaths to pneumonia or other respiratory illnesses, or delays in reporting of COVID-19 deaths) (Fineberg 2020; Woolf et al. 2020). COVID-19 confinement and social isolation, according to some studies, may contribute to the rapid decline of dementia patients and the rise in their mortality rates (Migliaccio and Bouzigues 2020; Killen et al. 2020). The COVID-19 experiences of people with dementia and their family caregivers are scarce, despite this knowledge. Determining how the pandemic will affect those living with Alzheimer’s disease and their care partners will require knowledge of the impact of COVID-19 (such as the difficulties and strategies for dealing with them). Consequently, the goal of this review was to synthesize the existing literature on the experiences of COVID-19 on people with dementia and their family caregivers.
COVID-19 restrictions and imposed confinement measures, according to research, have increased the already heavy workload of family caregivers for people with dementia (Cohen et al. 2020; Vaitheswaran et al. 2020). Ten of the articles focused on caregiver exhaustion and burnout (Barros et al. 2020; Brown et al. 2020; Canevelli et al. 2020; Cohen et al. 2020; Greenberg et al. 2020; Killen et al. 2020; Migliaccio and Bouzigues 2020; Roach et al. 2020; Savla et al. 2020; Vaitheswaran et al. 2020). Because of the limitations imposed by COVID-19, care partners’ workloads have increased as a result of being unable to access services such as respite care and daycare as well as meal programs and medical specialists (Cohen et al. 2020; Roach et al. 2020).
Dementia caretakers’ limited support and services have been exacerbated by the COVID-19 pandemic (Savla et al. 2020). In the literature, family care partners’ specific challenges during COVID-19 included increased household chores, limited social interaction (Savla et al. 2020), restricted movement outside the home, employment disruptions, financial concerns (Roach et al. 2020), technological challenges (Vaitheswaran et al. 2020), medication management for people with dementia (Brown et al. 2020), and restricted/terminated formal supports during the tense time period of the study (Barros et al. 2020). As a result of being solely responsible for care, care partners became increasingly frustrated and overburdened (Cohen et al. 2020; Savla et al. 2020).
According to Greenberg and colleagues (Greenberg et al. 2020), caregivers face increased difficulties if they are forced to perform difficult medical procedures like tube feeding, colostomy and catheter care, injections, and home dialysis without the assistance of home care providers. Since mental and physical health, as well as burnout (Brown and Roach 2020; Migliaccio and Bouzigues 2020), were the most common issues in the literature, the focus of this study was on the care partner’s mental and physical health (Barros et al. 2020; Cohen et al. 2020; Killen et al. 2020l; Canevelli et al. 2020; Savla et al. 2020; Vaitheswaran et al. 2020). For caregivers of people with advanced dementia, studies show a correlation between the amount of work they do and the length of time they spend at home or in the community (Cohen et al. 2020; Vaitheswaran et al. 2020).
This lockdown and closure of businesses that were not essential to the well-being of dementia sufferers was discussed in several articles. It has been reported that the COVID-19 lockdown has had a significant impact on people with dementia, such as altering daily routines, limiting physical activity and leading to social isolation. It has also been reported that health care services have been restricted or terminated as a result of the lockdown. Many other researchers have made the case that confined patients on COVID-19 are less active, less engaged in meaningful activities, less intellectually stimulated, and more socially isolated (Brown et al. 2020).
Many authors who wrote about the difficulties of COVID-19 confinement referred to a lack of access to health care and programs. Reduction or termination of access to day programs (Palermo et al. 2020), respite care (Savla et al. 2020), cognitive stimulation programs (Lara et al. 2020), meals, home care services, neurological rehabilitation therapy (Cohen et al. 2020), physical activity programs, health clinics (Killen et al. 2020), and demerit programs (Migliaccio et al. 2020) were among the specific services that were impacted by these policies (Vaitheswaran et al. 2020).
Dementia patients’ isolation from COVID-19, as well as physical distancing measures, contributed to social support difficulties. According to Boutoleau-Bretonniere et al. (2020), people with dementia were adversely affected by the cancellation of social gatherings, volunteer events, and religious activities. Furthermore, people with dementia who reside in long-term care facilities were found to be particularly vulnerable to the isolating effects of COVID-19 (Edelman et al. 2020). People with dementia who are isolated in long-term care facilities are more likely to suffer from depression, boredom, apathy, anxiety, irritability, restlessness, and difficulty sleeping, according to several studies (Velayudhan et al. 2020).
Damian Sendler
Twenty-one articles focused on the neuropsychiatric and cognitive effects of COVID-19 confinement on people with dementia (Barros et al. 2020; Boutoleau-Bretonniere et al. 2020; Canevelli et al. 2020; Chen and Chen 2020; Cohen et al. 2020; Goodman-Casanova et al. 2020; Lai et al. 2020; Lara et al. 2020; Palermo et al. 2020; Roach et al. 2020; Vaitheswaran et al. 2020; Wang et al. 2020). Boutoleau-Bretonniere et al. (2020) found that confinement had a negative impact on people with Alzheimer’s disease and low pre-pandemic cognitive function, for example, in terms of neuropsychiatric symptoms (such as agitation, depression, and anxiety). Disruptive behaviors, anxiety symptoms, irritability, and expressions of being upset about others wearing facemasks or their own facemasks were all reported by Vaitheswaran and colleagues (2020) in people with dementia. Other studies have suggested that confinement can worsen neuropsychiatric symptoms like agitation, apathy, anxiety, depression, sleep disorders, and cognitive decline (Lara et al. 2020; Chen and Chen 2020; Cohen et al. 2020). (Barros et al. 2020; Lai et al. 2020; Palermo et al. 2020; Roach et al. 2020). It was found that people with Alzheimer’s disease who lived alone or had a lower level of cognition were more likely to experience negative neuropsychiatric effects as a result of the lockdown (Boutoleau-Bretonniere et al. 2020; Cohen et al. 2020).
Damian Jacob Markiewicz Sendler: COVID-19’s challenges have been documented in numerous articles, but only four articles have focused on how people with dementia and their caregivers cope. A study of rural family caregivers found a variety of coping mechanisms, including gardening, spending time alone, spending time outdoors, making protective masks for care aides, using their cell phones, and playing computer games (Savla et al. 2020). People with dementia and their care partners can use a variety of coping strategies, such as maintaining daily routines that include housework, recreational activities (such as reading, computer games, and exercise), having access to family support networks and/or delivery services to get their groceries and medications, engaging in social interactions via phone or video chats (Brown et al. 2020; Canevelli et al. 2020), and staying in their own homes as long as possible (Goodman-Casanova et al. 2020). Engagement with technology was essential to many of these coping mechanisms.
eleven papers on COVID-19 identified the need for more evidence-informed research on home-based interventions to support people with dementia in pandemics and other emergencies (Brown et al. 2020; Chen and Chen 2020; Cheung and Peri 2020; Edelman et al. 2020; Greenberg et al. 2020; Lai et al. 2020; Canevelli et al. 2020; Migliaccio and Bouzigues 2020; Padala et al. 2020; Vaitheswaran et al. 2020). Research on the implementation of home-based technological interventions such as physical exercise programs, cognitive stimulation therapy and the expansion of telemedicine services (e.g., home video consultations, prescription refills and virtual access to health specialists) during the pandemic has been highlighted in the literature (Brown et al. 2020; Cheung and Peri 2020). (Edelman et al. 2020; Lai et al. 2020; Canevelli et al. 2020; Chen and Chen 2020; Vaitheswaran et al. 2020).
In contrast to technological interventions, home-based interventions for people with dementia and their caregivers are relatively new (Padala et al. 2020). Consequently, individuals with dementia (Brown et al. 2020) or their care partners may struggle to use technology and require guidance, online training, as well as tools to assist them (Barros et al. 2020; Vaitheswaran et al. 2020). Such research is necessary to understand the implementation and technological challenges from the perspective of people with dementia and their caregivers, according to Cheung and Peri (2020).
The need for more research on the implementation and evaluation of virtual social support interventions for people with dementia and their caregivers was also highlighted in the articles. (Migliaccio and Bouzigues 2020). Technology, such as FaceTime and WhatsApp, can make it easier to connect with others, as noted by Greenberg et al. (2020). People in long-term care facilities and nursing homes rely heavily on technology and social networking platforms because of the strict lockdown and visiting restrictions (Edelman et al. 2020; Padala et al. 2020). It is argued by Padala et al. (2020) that the ease of access and use of these applications in institutional care should be studied and evaluated.
Damien Sendler: The COVID-19 pandemic has placed an unprecedented financial and human toll on people living with dementia and those who care for them. Complicacies from COVID-19 are exacerbated by older age, frailty, and health conditions commonly associated with dementia (Alzheimer Society of Canada 2020; Centers for Disease Control and Prevention 2020). A study on how COVID-19 affects people with dementia (e.g., challenges, barriers, supports, and coping strategies) is not currently underway, despite these risks. The impact of COVID-19 on policies and programs for the support of people with dementia during the pandemic must be understood, however. As a result, the purpose of this scoping review was to identify and synthesize the existing literature on COVID-19 experiences of people with dementia and their family care partners.
Damian Jacob Sendler
The impact of COVID-19 on the lives of people with dementia and the caregivers who support them was examined in this scoping study (Roach et al. 2020; Savla et al. 2020). COVID-19 is causing significant difficulties for dementia patients, such as caregiver fatigue and burnout, confinement difficulties, worsening neuropsychiatric symptoms, and deteriorating cognitive function, according to our study’s findings This review examined a wide range of manuscript types and found that these issues were common to all of them (e.g., commentaries, letters to the editor, and original research studies). Factors like living alone, having advanced dementia, and the length of confinement to a community home in the wake of the pandemic were also found to worsen the pandemic’s effects (Goodman-Casanova and colleagues, 2020). (Boutoleau-Bretonniere et al. 2020; Cohen et al. 2020).
With limited or no access to formal services (e.g., home care, meal programs, and respite), COVID-19 found that family caregivers of people with advanced dementia were particularly vulnerable to care partner burnout (Savla et al. 2020). Aside from what has been documented in the literature, we have seen firsthand in our clinical practice that families of people with dementia face additional difficulties. It can be difficult to find and retain professional help, and it can be difficult to learn the intricacies of caring for a loved one with dementia without educational training. These difficulties can lead to increased family tension and disagreements about the care plan for a dementia patient.
Researchers and policymakers will benefit from the findings of this scoping review. More research into COVID-related coping strategies and support systems for people with dementia and their care partners is urgently needed, according to this review. Only a few articles dealt with how people with dementia can cope with COVID-19’s challenges, despite the fact that many articles discussed the difficulties (Brown et al. 2020; Goodman-Casanova et al. 2020; Canevelli et al. 2020; Savla et al. 2020). The pandemic has exacerbated the already heavy workload and scarcity of resources faced by family caregivers as a result of the disease’s spread (Savla et al. 2020). There has been an increase in mental health issues, exhaustion and burnout among care partners. To help caregivers in the event of a pandemic, more evidence-based research is needed to examine coping strategies (Roach et al. 2020; Savla et al. 2020; Vaitheswaran et al. 2020).
There is also a need for more evidence-based research on home-based interventions for people with dementia and their care partners (e.g. cognitive therapy, exercise programs, social support activities, and telemedicine). However, home-based interventions have only recently been made available to caregivers. Consequently, more research is needed to examine the implementation (for example, ease of use), scaling up (for example, geographic expansion to rural and remote communities) and evaluation of home-based interventions for people with dementia and their care partners.
Cooperative and evidence-informed research involving people with dementia and their care partners is critical in the development of COVID-19 policies to support those living with dementia. COVID-19 and dementia have been the subject of numerous articles (e.g., letters to the editor and commentaries), but few studies have been conducted with people with dementia. Dementia sufferers can contribute valuable information about the pandemic’s COVID-19 challenges and mitigation strategies because of their personal expertise and first-hand knowledge of COVID-19. As a result, effective COVID-19 policies for people with dementia and their caregivers must be developed through partnerships and collaborative research.
COVID-19’s effect on people with dementia and their caregivers is a growing unmet research need. Dementia patients are at greater risk from the pandemic’s spread than the general population because of social isolation and the physical distancing methods that are used to contain it. People with dementia and their caregivers have been severely impacted by the lack of access to health and support services as a result of restrictive confinement measures (Savla et al. 2020; Wang et al. 2020). COVID-19 appears to be causing significant difficulties for people with dementia, including caregiver exhaustion and burnout, confinement difficulties, and worsening neuropsychiatric symptoms and cognitive decline. However, only a few articles dealt with how people with dementia and their caregivers can cope with these COVID-related difficulties. Dementia sufferers and those who care for them are currently in a precarious position due to a lack of resources. The pandemic necessitates immediate action to help those with dementia and their caregivers.
Collaboration and more evidence-based research involving people with dementia and their care partners are essential in developing COVID-19 policies to support people with dementia. People suffering from dementia can contribute their personal expertise and lived experience of COVID-19 to the discussion of COVID-19 challenges and mitigation strategies. In order to reduce mortality and provide assistance to those suffering from dementia during the pandemic, cooperation and more research based on solid evidence are essential.
