Exploration of the Impact of COVID-19 on Dementia Care in Long-Term Care Facilities

COVID-19 first erupted in Wuhan, the Hubei province of China, in late December 2019, and was quickly identified in early 2020, as a global public health threat. COVID-19 is a respiratory tract infection caused by a newly emergent coronavirus.¹ Despite stringent efforts to contain the virus, its contagious nature led to global outbreak prompting the World Health Organization (WHO) on March 11, 2020 to formally declare COVID-19 as a pandemic.²

As of March 2022, WHO estimates 450,229,635 confirmed cases of COVID-19 globally. The disease is said to be responsible for the death of approximately 6,019,085 people and with an approximate mortality rate of 3%.³

COVID-19 is caused by the virus SARS-CoV-2, which is a new virus genetically linked to the SARS virus that causes severe acute respiratory syndrome.⁴ Symptoms include fever, cough, shortness of breath, and loss of smell or taste, among others. Infection can lead to pneumonia and death in more severe cases. The symptoms are similar to common cold or flu thus, testing is required to confirm if someone is infected with COVID-19. The transmission of the disease is high and is spread through direct contact with respiratory droplets generated when an infected person coughs or sneezes, or through saliva or nasal discharge. People can also be infected via touching surfaces contaminated with the virus; hence these viruses may survive on surfaces for several hours.⁵

There is still no cure for COVID-19 infection; however, several therapy options have been considered including hydroxychloroquine, azithromycin, and remdesivir, as well as the use of preventive authorized COVID-19 vaccines. Prevention by maintaining safe physical distances is still encouraged to contain the spread and public health professionals continue to recommend hand washing, and covering of nose, and face in addition to getting vaccinated if possible.⁶

Federal and Provincial Governments in Canada have been watchful of this outbreak and have been imposing strict measures to contain it. Still, a significant number of COVID-19 cases have been identified in Canada, and the numbers have been increasing on a daily basis. Though the mortality rate in Canada is not as high as other developed countries, approximately 37,000 people have died of COVID till now.⁷ Reports suggest that older adults with multiple morbidities are the most vulnerable populations during this pandemic.⁸ Canada has a large older adult population, among which approximately 5% live in retirement home or long-term care (LTC) facilities.⁹

Older adults remain the most vulnerable population amid a pandemic. Due to the presence of underlying medical conditions such as high blood pressure, heart disease, or diabetes, they are at greater risk of developing severe illness if infected with the virus.

According to Statistics Canada,¹⁰ in 2016, about 17% of Canadians were aged 65 years or older, and 3% of the total population was aged older than 85 years. As people age, their overall health, physical and mental abilities, nutritional requirements, and social situation change. Increased life expectancy in Canada has led to an increase in the number of older adults who are unable to live independently and need assistance due to cognitive impairments. Dementia is one of the leading causes for cognitive impairment among the older adult population. As of today, around half a million Canadians are living with dementia, and about 250,00 new cases diagnosed every year. It is expected that the number will rise to 937,000, an increase of 66% by 2031.¹¹

Dementia is a chronic syndrome of the mental process which could be caused by brain diseases or injury.¹² According to the Diagnostic and Statistical Manual, Fifth Edition (DSM-5), dementia is classified as neurocognitive disorder.¹³ It is characterized by memory loss, difficulties in speaking, thinking or problem-solving ability, handling complex tasks, as well as planning and organizing.¹⁴ Thus, the concerning issue in dementia is the inability to carry out everyday activities as a consequence of diminished cognitive ability. Moreover, dementia has no permanent treatment; thus, symptoms management, continuous monitoring, and assistance with daily activities are vital aspects of dementia care.

In Canada, most older adults tend to live alone or with their spouse, either at home or in institutional or communal settings, such as in LTC facilities. It is reported that most residents of LTC facilities are aged an average of 80 years, and 70% have dementia.⁸ In Canada, LTC facilities are institutional-based care facilities that provide 24-hour functional support to people who are frail, have comorbidities, and require assistance with daily activities (eg, eating, bathing, toileting, etc). Residents of LTC facilities are vulnerable to having severe complications of COVID-19 infection as they are more likely to be immunocompromised, and beyond that large number of people living in a confined space creates the risks for the spread of infection. It is evident the case fatalities of COVID-19 among adults aged 65 years and older are significantly higher than the younger adults.¹⁵ The transmission of COVID-19 is mainly through direct hand-to-hand contact, as well as respiratory droplets; hence its transmission rate is high between people who are in close contact.¹⁶

It is reported that the number of COVID-19 cases in LTC facilities are disproportionately higher in Canada than in other countries.¹⁷ Although only 5% of Canadian older adults reside in LTC facilities, high numbers of LTC residents have contracted the infection, which resulted in serious complications and death. As of March 2022, the number of deaths among the residents of LTC facilities represented 46% of all COVID-19 deaths in Canada.¹⁸ It is evident from several studies that dementia care in LTC facilities has been severely affected.¹⁹

US national guidelines have recommended several steps to control the current pandemic in LTC, such as banning of visitors, mandatory face masks for all staff, infection control training on hand hygiene and use of personal protective equipment (PPE), social distancing, cancellation of group activities, additional routine cleaning, and prevent staff from working in multiple settings. Thus, social distancing is a significant preventive measure to limit the spread of COVID-19²⁰ and to keep oneself safe from getting infected. For persons with dementia, who are already dealing with memory loss, reduced problem-solving abilities, and other cognitive impairments, social distancing is an added burden. People living with dementia face difficulties in understanding the safeguard procedures and following the public health protocol. Additionally, due to their cognitive impairment, older adults with dementia may lack knowledge about the use of telecommunication, which could be their only medium to stay connected, and are therefore at higher risk of experiencing loneliness and social isolation.²¹ Loneliness can result in poor health outcomes, including depression, anxiety, and worsening of dementia symptoms.²² Besides, fear of getting infected and death has further deteriorated their mental health conditions.²³ Additionally, the pandemic impacts the lives of persons with dementia, family members, health care professionals, and the health care system as a whole. Due to the banning of visitors to residential homes and LTC facilities, older adults lost face-to-face contact with their family members, which could adversely affect their social connection. Group activities in LTC are not permitted in order to comply with social distancing protocol, which results in the increased risks of social isolation for LTC residents. Maintenance of personal hygiene and physical distancing may be challenging in LTC settings.

Currently, around 261,000 people with dementia live outside of publicly funded LTC in Canada.²⁴ The rising number of people living with dementia in LTC facilities creates immense challenges for health care providers (HCPs). Apart from managing patient care, health care workers have to maintain physical distancing protocol due to COVID-19, which increases their levels of stress, anxiety, and workload. Health care staff are also impacted due to reducing family support of the residents, fear of being infected, and worrying about transmitting the virus to their family members.²⁵ Overall, COVID-19 is an alarming public health issue whose impacts are still being investigated. Residents of LTC facilities are one of the most vulnerable populations and their safety can be compromised if appropriate measures are not taken. Because of this, there is an urgent need to increase our understanding regarding the impact of COVID-19 pandemic on the delivery of dementia care in LTC facilities, as well as its effects on persons with dementia and their caregivers, and the solutions needed to overcome these challenges.

This literature review aims to summarize existing literature to address the impact of dementia care delivery in LTC facilities during the COVID-19 pandemic by:

• identifying the effects of COVID-19 on dementia care from the perspectives of both persons with dementia and their caregivers in LTC;
• examining the measures that have been undertaken to overcome the barriers of delivering dementia care during the pandemic; and
• discover knowledge gaps in the existing literature to explore future opportunities for research and recommendations on strengthening the delivery of dementia care amid the COVID-19 outbreak in LTC facilities.

This paper is a descriptive review of the existing literature to examine the impacts of dementia care in LTC during the COVID-19 pandemic and the approaches that have been taken or recommended to manage these challenges. The literature review was conducted using a predefined inclusion/exclusion criteria and search strategy which are stated below.

Inclusion and Exclusion Criteria
To determine the scope of the existing literature, a preliminary search was conducted. It was noted that since COVID-19 is an emerging global health issue most of the studies are either still in progress or the scientific articles are yet to be published. Thus, to expand the horizon of the literature search, grey literature was included along with scientific articles to obtain a better insight of this ongoing crisis. Regarding grey literature, commentary, editorial letter, correspondence, perspective, report, and point-of-view papers were examined to gain an extensive knowledge of the challenges of dementia care in LTC during COVID-19, as well as exploring the perspective of both patients with dementia and their caregivers, and the strategies that have been implemented to cope with the current pandemic.

Articles that were published until mid-June 2020 and in English were included in the search. Keywords for the search term included: “Dementia,” “Long-term care,” ‘Older adults,” and “COVID-19” in various combinations. “Elderly,” “Geriatrics,” “Seniors” were also used within the keyword set to describe older adults. For long-term care, “Nursing Homes,” “Institutional” or “Communal Settings” and for dementia care, “Alzheimer’s Disease” “Cognitive Impairments” or “Cognitive Limitation” were used interchangeably. To define COVID-19: “Novel Coronavirus” or “SARS CoV-2” were included. The research study that consists of populations, including residents who have dementia, the staff of LTC facilities (health care professionals such as nurses, personal support workers, and other formal caregivers) were included in the literature review. Articles that discussed the impact of mental health disorders other than dementia were excluded as dementia care is the main focus of this literature review.

Search Strategy and Data Analysis
An extensive search of the literature was conducted using the Ontario Tech University library databases, including the PubMed electronic databases and Wiley Online Library. Regardless of study design, potential papers that addressed the keywords and search terms, with relevance to the research topic, were retrieved. A total of 5422 research papers were identified from the keyword search of both databases, which consisted of peer-reviewed articles, book chapters, eBooks/books, and thesis/dissertations. The search strategies were similar for both databases with the use of consistent inclusion, and exclusion criteria.

Abstracts that were relevant to the research topic were identified, and then full-text papers were retrieved for further review. In the absence of the abstract, full-text papers were retrieved and reviewed for prospective inclusion. The reference section of each article was also reviewed for potential articles.

A total of 17 articles were finally selected from the pool of articles that met the screening criteria. These articles were then reviewed repeatedly to identify contents relevant to our topic under consideration. The analysis was thematic in nature, where similar contents from various articles were clustered and meaningfully interpreted. The final set of articles were analyzed to identify the key findings, research gaps, and common themes. The list of reviewed articles with data extraction details is presented in Supplementary Table (Supplementary materials can be viewed by clicking on and downloading the PDF to the right of this article).

Results
Following the descriptive analysis of the existing literature, the challenges of dementia care in LTC during COVID-19 pandemic and the recommended measures as potential solutions were examined which has led to the emergence of the 8 themes (with 4 themes that describe the challenges and 4 themes that address the solutions), divided into the impacts of dementia care in LTC and suggestion solutions, as discussed below.

1. Challenges in infection control
Residents of LTC tend to have multiple medical conditions and are frail which make them more susceptible to infection.¹⁹ LTC residents share the same air, water, food, caregivers, and medical care, which may facilitate the transmission of infection.¹⁹ Residents in LTC also share accommodation and have less physical space in common areas, thus maintaining physical distancing is difficult for residents, especially those residents who have dementia. Due to cognitive impairments, people with dementia may have difficulties understanding and following the public health protocol for infection prevention.²⁶ It could be challenging for them to follow safeguard procedures, such as wearing masks, hand sanitization, and maintaining a safe distance. Lacking the appropriate self-quarantine procedures and ignoring the public health warnings could expose them to a higher chance of infection.²¹

People with dementia could also have limited access and knowledge about the use of technology, resulting in difficulties in accessing the most up-to-date information. Internet sources and social media are often associated with misinterpretations, whereas traditional media such as television, radio, and newspaper are considered preferable platforms among older adults. As a preventive measure, restrictions have been applied in leisure activities, and access to these traditional media by the residents is significantly limited, which interferes with their abilities to receive important updates of public health information in a timely manner.

2. Increased formal caregiver burden
As a safety protocol for COVID-19, staff must wear face-coverings in the LTC facilities; also, if there are residents who tested positive with COVID-19, full PPE must be worn for the care of these residents. Velayudhan et al identified that HCPs with PPE frightened dementia patients as they have difficulties recognizing their faces which negatively affects their ability to socially interact with their caregivers.²³ These safety precaution measures can be time-consuming and increase the level of difficulty working with residents, interrupting person-centered care, and contributing to an increased workload and stress of the staff.²⁷

Typically, during their visits to LTC, family, and friends are often able to calm the cognitively impaired residents, which can help with the improvement of behavioral and psychological symptoms of dementia. However, COVID-19 restrictions such as lockdown and banning of visitors to LTC causes an added burden and increased responsibilities of the HCP, who now assume the care that would otherwise be provided by the informal caregivers. With group activities suspended, formal caregivers need to provide one-on-one activity sessions, which has significantly increased the HCPs caregiving burden. Overall, the level of workload has been increased among the staff of LTC, and many HCPs report symptoms of anxiety, exhaustion, and burnout since the lockdown of the facilities during the pandemic. Furthermore, the fear of being infected by the virus, the concern about their own health and safety, and worrying about transmitting the infection to their loved ones are examples of sources of stressors among the formal caregivers in LTC.^21,25

3. Decline in cognitive function
The mental health of the residents living with dementia is severely affected during the pandemic. Being unable to have face-to-face contact with their family members and friends can lead to the development of mental health problems, including depression and loneliness.²¹ Flint et al have identified that social distancing rules cause loneliness among people with dementia, resulting in the exacerbation of behavioral and psychological symptoms of dementia, as well as the decline in cognitive function.²⁸ Additionally, due to the disruption of the routine activities, residents with dementia are having challenges with understanding the reasons behind the restrictions of visitors, which creates a heightened level of anxiety, agitation, and frustration.^29,30 Furthermore, to comply with social distancing regulations and suspension of leisure activities, residents spend more time alone in their rooms, which limited their range of mobility, resulting in residents who spent a prolonged period sitting or lying down, and contributed to the development of pressure sores. Residents in LTC are at risk for physical inactivity and malnutrition (due to the lack of shared meals or lack of assistance with eating) and sleep disturbances, which further affect their physical well-being.²⁷

The usage of antipsychotics, hypnotics, and other sedatives have increased among residents with cognitive impairments (such as agitation, aggression, or wandering), which have contributed to the occurrence of side effects and adverse outcomes. Reduced physical activity and unhealthy behaviors were found to be related to an increase in morbidity and mortality among residents of LTC.⁸ The rate of high mortality and morbidity in LTC will affect the mental health and well- being of LTC residents due to their underlying fear of illness and death.²³

4. Shortage of staff and resources
During the COVID-19 pandemic, LTC facilities are having tremendous challenges to provide high-quality care to the residents. LTC facilities are experiencing staff shortages,⁸ and many staff do not have the knowledge and training to manage psychiatric symptoms and behavioral problems of persons with dementia. Staff shortages may be exacerbated due to the recommendations to stop formal care providers working at multiple facilities to prevent the spread of the virus. Additionally, shortages of resources such as PPE among staff at LTC facilities may result in the reuse of masks and gloves, which could have increased the risk of spreading the infection. Also, the formal caregivers of LTC are at higher risk of being infected with the virus, which has resulted in an increased level of psychological distress among staff, as well as staff shortages due to sick leave and precautionary isolation measures.²⁸ As an alternative to person-centered care, virtual care is recommended²⁸ and practiced for managing the care of persons with dementia, but due to the lack of resources and technology available in LTC, the provision of virtual care becomes challenging.

1. Infection prevention strategy
Early detection, social isolation, and source control are crucial to prevent the spread of the virus in LTC.¹⁹ Zhang and Song suggested that it is important to test all the staff of LTC for SARS-CoV-2, self-isolate the older adults, and implement restrictions of the visitors.³¹ These strategies could be useful in preventing virus transmission among the residents and health care staff of LTC.

Prescreening of visitors and reducing unnecessary transfer of residents in LTC have been practiced in Singapore as a preventive strategy. Residents with fever and respiratory symptoms were also referred to acute care hospitals to rule out the potential of COVID-19 infection.³²

Flint et al and Hsu et al proposed health care staff should work in a single LTC facility.^8,28 Hsu et al identified the necessity of recruiting more staff in LTC to reduce their workload and help contain the spread of the virus.⁸ Besides, Yen et al suggested that it is useful to maintain a health log for both residents and staff to monitor and track any potential exposure of COVID-19 infection. Environmental cleaning and frequent disinfection of all commonly touched surfaces such as doorknobs, tables, light switches, bed rails, and bathrooms could reduce the potential spread of infection.³³

2. Virtual communication and care
During these times of social distancing, virtual communications with health care professionals, family, and friends are highly recommended and have been practiced widely in LTC. It is suggested that frequent communications with family over the telephone or video chat might be beneficial.³⁴ Online communications via Zoom or Skype could connect the residents with their loved ones and reduce their levels of confusion and distress.³⁰

A single case study conducted by Padala et al has examined that persons with dementia who used video calls via a smartphone with family members can reduce behavioral problems by reducing anxiety and agitations during the pandemic. Information communication technology created a sense of social connectedness and had a positive impact on the health and well-being of the residents in LTC.³⁵

Additionally, telemedicine and digital technology can be useful media platforms for remote monitoring, care, and follow-up.³⁶ This technology has excellent potential in dementia care, as it saves time, while maintaining physical distancing. Wang et al suggested that behavioral management through telephone hotlines and online psychological consultations can be beneficial.²¹ According to the commentary of Pachana et al, video consultation has been practiced among healthy older adults and persons with dementia in Australia and has been widely recommended in reducing the anxiety and depression of persons living with dementia and the workload of caregivers.²⁵

An example of newly implemented technology includes the Beam Robot, a novel type of virtual communication technology, which has been recommended by Tan & Seetharam. It is a moving robotic device by which one can communicate remotely via video chat in real time. Thus, it has huge potential in minimizing the need for direct face-to-face contact with the patient.³²

Electronic and audio visual programs can be utilized to connect the LTC staff, families, and residents with dementia.²⁷ Additionally, relaxation or meditation exercise through electronic media for residents with dementia is suggested as an alternative to leisure activities and face-to-face psychotherapy.²¹ Furthermore, Devita et al has proposed a remote intervention to provide the use of traditional psychological support for older adults and their caregivers, as well as providing enhanced geriatric assessment and cognitive stimulation training for persons with cognitive impairment. Remote intervention could help reduce caregivers’ responsibilities, particularly during the quarantine and social isolation, where patients who have dementia needed extra attention and support.²⁶

3. Staff training and pandemic preparation
HCPs in LTC should have adequate knowledge about the clinical differences of COVID-19 and the appropriate skills to manage the infection among the residents living with dementia.³⁷

Managing residents living with dementia during the pandemic is challenging for HCPs, as they have to treat the infection and manage their behavioral and psychological symptoms at the same time. Therefore, staff training is needed to perform the proper skills of wearing PPE, hand hygiene, and remote monitoring. Online education and training of the staff are highly recommended to comply with the physical distancing rules and staff safety. Implementation of e-health such as an electronic medical record in LTC could reduce the burden of the staff by improving their workflow and care quality.²⁷

4. Increased resources in LTC
During the pandemic, there is an urgent need for nonpharmacologic interventions for residents with dementia which are person-centered, easy to deliver, and convenient to effectively improve the health outcomes within the LTC settings, as well as reducing unnecessary hospital admissions.²³ Appropriate use of technology has the potential to mitigate the effects of COVID-19 in LTC.  Goodman-Casanova et al identified TV-based assistive integrated technology has a positive impact on the mental health of older adults with dementia. From telephone interviews with 100 older adults with dementia, it identified that traditional methods such as television are a preferred device to access COVID-19 information, recreational activity, and memory exercises.  Smartphones, tablets, and computers could play an important role in reducing the feelings of social isolation among persons with dementia.²⁹ D’Adamo et al recommend that added resources such as alternative isolation and quarantine center for residents would help manage COVID-19 cases in LTC.³⁷ Furthermore, Yen at al recommended the implementation of enhanced traffic control bundling (eTCB) to mitigate the COVID-19 pandemic in LTC. eTCB has been applied in hospital settings and has proven to be effective in limiting the droplet and fomite transmission in hospitals and the general community. By effectively executing eTCB in LTC, particularly integrating compartmentalization within zones and active surveillance, the transmission of the virus into LTC could be reduced with enhanced protection of the LTC residents and staff.³³

The results of this literature review indicate that the effects of COVID-19 on dementia care in the LTC facilities are alarming. The pandemic creates multiple layers of challenges for both residents and the health care staff in the facilities. The behavioral and psychological symptoms of dementia for LTC residents are exacerbated due to the results of loneliness, depression, and boredom.²⁸ Amid the pandemic, shortage of trained staff, insufficient resources, and the required knowledge to deal with psychiatric symptoms make it difficult for HCPs and LTC facilities to provide adequate care and support to its residents. The fear of getting infected with the virus, suspension of group activities, and the need to provide one-on-one psychiatric therapy for dementia patients, increases the levels of stress, anxiety, and workload of the staff in LTC.^21,25,27

Furthermore, due to the lack of adequate quarantine space, limited knowledge of technology, and difficulty in complying with public health prevention protocol among the residents with dementia, are examples of difficulties in maintaining proper infection control.^21,26 Several measures have been taken to overcome the barriers of providing dementia care in LTC settings. Early detection, mass screening of COVID-19, and educating on wearing a face mask, and hand hygiene are approaches that are vital to infection prevention.¹⁹ Virtual communications and care have been practiced in many LTC facilities and proven to be effective during the practice of social distancing.

Face time with family members builds confidence and reduces anxiety and agitations of residents with dementia.³⁵ Beam Robot is recommended for virtual communications in real time for minimizing direct face-to-face contact between the patient, family members, and HCPs.³² Telemedicine is suggested as an excellent medium for remote monitoring and psychological consultations. Television-based assistive integrated technology has a positive impact on residents living with dementia and is identified as their preferred media platform for information and leisure activity.²⁹ Electronic media can also serve as leisure media and deliver relaxation and meditation exercises. Remote intervention could aid in providing cognitive stimulation training for persons with dementia and improve the caregiver’s responsibility.²⁶

Similarly, virtual reality reminiscence therapy could also be a potential solution to address loneliness and social isolation for older adults in LTC.³⁸

It is evident from the literature that the challenges due to pandemic in dementia care are significant and need critical attention. The reviewed articles, including grey literature, have recognized the effects and suggested solutions for the prevention and management of COVID-19 cases in LTC. In this review, randomized controlled trials, systematic reviews, and meta-analysis have not been found, which defines the impact of the COVID-19 pandemic on residents with dementia and their caregivers. Rigorous research is needed to identify and examine the impact of the pandemic in LTC, and measures need to be implemented appropriately to tackle these situations.

Among the articles discussed in this study most of them were not original research, indicating that the results of the review might not be comprehensive. Besides, COVID-19 is an ongoing public health threat, and the challenges of providing dementia care in LTC are constantly changing on a daily basis. This literature review only included articles published during the first 6 months of the pandemic, thus most recent literatures might not have been covered in this review. We tried to overcome this gap by identifying latest articles that might have discussed the challenges and solutions in question. We found only one article, by Gosse et al, which also suggested virtual care as a potential solution for care delivery at LTC facilities amidst this pandemic.³⁹

Despite these limitations, this literature review attempts to identify the challenges of the current pandemic on dementia care in LTC. It includes the perspectives of both residents with dementia and the HCPs who are working in these facilities. The review also identifies steps that have been taken to minimize the negative impact associated with these challenges. There is a need for government as well as non-government organizations to take adequate measures in preventing the challenges that LTC facilities are facing in delivering dementia care. Adequate resources and appropriate technologies should be provided to LTC to ease the burden of workload among HCPs. There is an urgent need to recruit and adequately train LTC staff about the management of dementia care during the COVID-19 pandemic crisis.

It has been two years since the pandemic began, and the number of active cases in LTC facilities has varied throughout the years. After the first wave, deaths in LTC facilities reduced drastically when public health measures were strictly implemented. With the ease of restriction, the infection rate increased again among the general population, as well as in the LTC sector. The second wave affected the LTC staff which in turn increased the mortality rates among residents of LTC.³⁹ It is evident that LTC facilities are still struggling to cope with the current pandemic as actions are yet to be taken, or measures taken have failed to improve the situation.

Authors: Rabia Akhter, MBBS¹ • Winnie Sun, RN, PhD¹

Affiliations:
¹Ontario Tech University

Disclosures:
The authors report no relevant financial disclosures.

Address Correspondence to:
Rabia Akhter, MBBS
Ontario Tech University
2000 Simcoe Street North
UA3033, ON
Oshawa, ON L1H 7K4
rabia.akhter@ontariotechu.net