Abstract
This review explored the impact of the COVID-19 pandemic on people with cognitive impairment living in aged care facilities. It also considered policy and organizational responses to COVID-19, and makes recommendations to ameliorate the impact of the pandemic on residents with cognitive impairment in aged care facilities. ProQuest, PubMed, CINAHL, Google Scholar, and Cochrane Central were searched April-May 2022 for peer reviewed articles, and an integrative review of reviews was conducted. Nineteen reviews were identified which referred to people with cognitive impairment living in residential aged care facilities (RACFs) during COVID-19. Negative impacts were highlighted, including COVID-19 related morbidity and mortality, social isolation, and cognitive, mental health and physical decline. Few research articles and policy responses consider people with cognitive impairment in residential aged care. Reviews highlighted that social engagement of residents should be better enabled to reduce the impact of COVID-19. However, residents with cognitive impairment may have inequitable access to communications technology for the purposes of assessment, health care and social engagement, and require more support (along with their families) to access this technology. Greater investment in the residential aged care sector (eg, for workforce and training) is required to address the significant impacts of the COVID-19 pandemic on people with cognitive impairment.
Keywords
Residents in aged care facilities, in particular those with cognitive impairment, have a higher risk of acquiring and dying from COVID-19. Social isolation and restrictions can lead to cognitive decline1,2 for all residents, and particularly residents with cognitive impairment, and are associated with mental health and behavioral problems. Information and communications technology has been used to mitigate the effects of social isolation caused by COVDI-19 related visitor restrictions in place.
Few studies have considered the impact upon and specific challenges for residents with moderate to severe cognitive impairment in residential aged care facilities and strategies for the sector. This article brings together the latest evidence from a range of reviews on the impact of COVID-19 for people with cognitive impairment and strategies to promote social engagement.
There is evidence for the effectiveness of videoconferencing for assessment of cognitive impairment. However, evidence for its use for social engagement is mixed and there has been inequitable access to ICT in RACFs. More resources (including staffing), support and training (for staff, residents, and families) are required for the use of ICT in residential aged care. More research and evaluation is required on prevention, preparedness and COVID-19 response strategies for people with cognitive impairment and interventions to mitigate the effects of social isolation.
Introduction
Containment of the COVID-19 pandemic has been associated with smaller country population size and better public governance, including investment within the health system. 3 Good governance has also been associated with timely vaccine administration. 4 Conversely, poor investment in the aged care system has been associated with challenges in preventing and managing the pandemic’s impact. 5 The aged care sector was afforded a low priority in COVID-19 responses in some countries.
A study which compared COVID-19 response strategies of the United Kingdom (UK) and Australia found that both countries prioritized hospital resources. These countries either discouraged admissions to hospitals from residential aged care, or discharged from hospitals without testing for COVID-19, placing a greater burden on aged care. 6 In Australia, residential aged care facilities could not always isolate infected residents, and initially had a shortage of personal protective equipment (PPE) and oxygen—resources prioritized for hospitals. 6 However, deaths in aged care facilities in the UK were 270 to 300 times higher than in Australia (to 7 May 2020), despite the population in the UK being 2.5 times higher than Australia, and Australian nursing homes having more residents per facility (67.8 on average compared to 26.5 in the UK). 6 The difference in death rates across countries was attributed to several factors including Australia’s earlier lockdown strategy (including restrictions on visits to nursing homes) and viral testing to prevent new cases. 6 However, in the first 10 months of 2020, 30% of those who died from COVID-19 in Australia had dementia—these people were also older and more likely to be living in residential aged care facilities where outbreaks occurred. 7 Additionally, concerns were raised about the impact of lockdowns and visitor restrictions on residents with dementia.
In this aged care system context, a range of studies have highlighted that older people, 8 particularly those in residential aged care,9,10 are more vulnerable to acquiring and dying from COVID-19. Hashan et al’s systematic review and meta-analysis indicated single facility attack rates amongst aged care residents of 45% and case fatality rates of 23%. 11 Kunasekaran et al’s found the attack rate of COVID-19 was 42% (95% CI, 38%-47%) in residents and 21.7% (95% CI, 15%-28.4%) in staff of aged care facilities. 10 Frazer et al indicated an average 24.2-fold higher rate of death from COVID-19 for older people in aged care facilities than for older people living in the community. 9
Facility level factors associated with higher COVID-19 prevalence in residential aged care include large facility size and having fewer stand-alone buildings,9,10,12,13 crowding, 9 the urban location of facilities, 14 and the level of COVID-19 spread in the general community within which the facility is placed.12,15 More stand-alone buildings and compartmentalized staffing zones are associated with lower COVID-19 prevalence. 12 Workforce factors associated with higher prevalence include staff working across facilities or sites,9,12,14,16 and facilities employing nursing home agency staff (who are more likely to work across sites). 9 Fewer staff and high resident-staff ratios are associated with higher COVID-19 prevalence.10,12,17,18
Whilst many reviews and individual research studies have focused on residential aged care facility factors associated with higher COVID-19 morbidity and mortality, fewer studies have focused upon the impact of COVID-19 responses on residents with moderate to severe cognitive impairment. However, between 50% and 90% of people in residential care homes have cognitive impairment or dementia, 19 and rates of dementia are increasing. 20 Around half of people in residential aged care facilities have Alzheimer’s Disease and related disorders, 21 and over half of people (54%) in residential aged care in Australia have dementia. 22
This integrative literature review was undertaken as part of a broader study which arose from a research collaboration between 5 aged care organizations in (region, country). The overall goal was to increase residential aged care sector preparedness, readiness and response actions for an infectious disease outbreak or pandemic in the future. Aims of the broader study include to: (1) Identify the health impacts of social restrictions during COVID-19 on (a) residents with cognitive impairment, and (b) on the aged care workforce (with a focus on the Culturally and Linguistically Diverse -CALD) and (2) Evaluate strategies to support psychosocial and physical well-being of (a) residents with cognitive impairment, and (b) aged care workforce (focusing on the CALD). The broader study aims to have a short-term impact through application of findings by the 5 partner organizations, and in the longer term, will assist the aged care sector to understand the impact of COVID-19 restrictions, and inform development of sector-wide interventions and service models, specifically for residents with cognitive impairment, and the workforce (focusing on the CALD). This paper is based on findings from the integrative literature review conducted for the broader study, and aimed to answer the following questions:
What were the specific organizational challenges during the COVID-19 pandemic for aged care organizations with residents with moderate to severe cognitive impairment?
What are the factors which enable optimal service delivery during an outbreak or pandemic for aged care residents with moderate to severe cognitive impairment?
What is the evidence for quality interventions that can increase social engagement and reduce the impact of social restrictions for people with moderate to severe cognitive impairment in residential aged care facilities?
Methodology
As part of a broader research study, an integrative literature review was conducted with 4 key areas: (1) impact of COVID-19 on the residential aged care sector (including residents with cognitive impairment), (2) COVID-19 related interventions in the residential aged care sector, (3) impact of COVID-19 on the residential aged care workforce, and (4) policies and strategies in response to COVID-19. This article focuses on the 19 peer reviewed review articles and commentaries identified which referred to residents in residential aged care facilities with cognitive impairment and dementia during the COVID-19 pandemic. It does not focus on the overall impact of the COVID-19 pandemic on the sector or workforce, which are subjects of other papers.
For the integrative literature review, the databases ProQuest, PubMed, Cumulated Index to Nursing and Allied Health Literature (CINAHL), Google Scholar and Cochrane Central were searched between 6 April and 9 May 2022 for review articles and original studies related to organizational challenges, sector (including workforce) impact and innovations related to COVID-19, and residents with cognitive impairment (using concept areas 1-5 below). Additional Google Scholar searches related to interventions for residential care facility residents with cognitive impairment during the COVID-19 pandemic was undertaken on 9 May 2022 (using concept areas 1, 2, 4, and 6 below). On 24 May 2022 an additional search was undertaken for papers which considered the workforce from CALD backgrounds (using concept areas 1, 2, 7, and 8 below). Inclusion criteria were (1) peer reviewed review articles that included reviews, original studies, and commentary articles, (2) published between December 2019 and May 2022, (3) articles in English. Search terms for various concept areas are indicated in Table 1 below.
Search Terms for Concept Areas.
Following the initial searches, titles of papers were screened and abstracts were read to conduct an initial assessment for eligibility, and articles downloaded into Endnote. There were 345 articles downloaded into Endnote. Given the high volume of articles identified, the decision was made to focus upon (1) review articles for “sector impact” and (2) review and individual studies that focused on residents with cognitive impairment. Following a full read of articles, articles were transferred across of Endnote files and/or included or excluded based upon relevance to the study and bibliographies. The total number of full articles included in the broader review was 116 articles. After a full read of articles, a database was established for data extraction, with information extracted including: author/title/year, purpose of study, country and setting, research design, search period (for review articles), databases searched, type of papers included (for review articles), type of intervention (if applicable), key findings (including statistical findings) and implications, and quality of study/review (considering the level of evidence in the National Health and Medical Research Council framework 23 ). A full explanation of the search methodology is outlined in an integrative literature review report. 24 The following table (Table 2) indicates the number of articles identified, screened, downloaded into the Endnote files, read and included in the review.
Articles Identified Within the Broader Study.
Results
The results are discussed across 3 key areas: (1) cognitive impairment and COVID-19 morbidity and mortality rates; (2) the impact of physical restrictions and social restrictions on people with cognitive impairment; and (3) strategies and interventions in residential aged care facilities (Table 3).
Articles Included Related to Residents in Aged Care Facilities With Cognitive Impairment.
Cognitive Impairment and Morbidity and Mortality Rates Associated With COVID-19
Reviews demonstrated that people with cognitive Impairment have a higher risk of acquiring COVID-19, and higher COVID-19 morbidity and mortality than those without cognitive impairment.13,25,28,31,33,36,41 Azarpazhooh et al found a significant positive correlation (P < .001) between life expectancy (r = .60), healthy life expectancy (r = .58), dementia disability adjusted life years (r = .46) and COVID-19 caseloads across countries. 25 One study identified 4 co-morbidities associated with mortality from COVID-19, with severe cognitive impairment the comorbidity associated with the highest increased risk of mortality from COVID-19 (OR = 2.79, 2.14 to 3.66). 42 Zhang et al discovered that patients with frailty (which included cognitive impairment in diagnoses of frailty) who were infected with COVID-19 had an increased risk of mortality from COVID-19 compared to those who were not frail (pooled hazard ratio 1.99, 95% CI, 1.66-2.38; pooled odds ratio 2.48, 95% CI, 1.78-3.76). 41
Higher rates of COVID-19 in people with cognitive impairment have been attributed to lack of understanding of or ability to abide by public health measures including physical distancing guidelines.28,33,36 These reviews reported that people with cognitive impairment could not understand or remember infection prevention and control measures, including social restrictions. Dependence upon caregivers for basic needs, congregate living arrangements and wandering behaviors also contribute to greater COVID-19 risks.28,31,33,36
The Impact of Physical Distancing and Social Restrictions on People With Cognitive Impairment
Eight reviews made reference to the impact of physical distancing and social restrictions on people with dementia or cognitive impairment resident in aged care facilities,21,26,27,32,33,37,39,40 whilst another study considered the impact of social isolation on residents with and without dementia. 35 Reviews highlighted the impact of COVID-19 social restriction measures on social isolation and loneliness for people with and without dementia, but particularly for people with cognitive impairment and dementia.21,37,38,43
Simonetti et al conducted a systematic literature review to describe behavioral and psychopathological changes in people with dementia during the COVID-19 pandemic and associated management challenges. 37 The main changes reported were apathy, anxiety and agitation, associated with long term social isolation and withdrawal of social contacts. 37 Evidence on mood changes (eg, depression) was mixed, although many studies also reported “sad mood” associated with social isolation. 37 Symptoms such as agitation were reportedly managed by higher levels of medication to control behavior, 44 and few other treatment strategies were reported. 37 The authors suggest that non-pharmacological interventions might include: patient targeted interventions to reduce stress; caregiver targeted interventions including support and training; and environment targeted interventions including addressing over or under stimulation, safety risks or lack of routine. 37 Simonetti et al claim that there are mixed reports on the effectiveness of using telecommunications technology for people with dementia (associated with the “inability” of electronic devices to facilitate accurate physical and neurological assessment, or hearing and vision problems affecting assessment 37 (however, see Gosse et al). 29 They recommend the provision of caregiver support and having skilled nursing home staff in residential care facilities, to enable social interaction and tailor technological support to the needs of people with dementia. 37
Suárez-González et al considered the impact of COVID-19 isolation measures on people with dementia 39 and identified only 2 studies conducted in care homes, including an Irish study, 45 and a French study that focused on retirement homes. 46 Most studies reported changes in cognition for people with dementia as a result of social isolation measures, with worsening or new behavioral and psychological symptoms. 39 O’Caoimh et al’s Irish study considered the impact of social restrictions on residents of nursing homes with dementia, asking family/friends of residents (both with and without dementia) to rate the status of those they were caring for via an online survey. 45 Caregivers reported that their family member/friend experienced changes in cognition, worsening of memory, and worsening of mood and activities of daily living. 45 Those whose relative/friend in a nursing home had dementia were more likely to report a reduction in their relative’s memory during the period of COVID-19 restrictions. 45 Visitors whose care-recipient had dementia (irrespective of the stage of dementia) had lower wellbeing and were more likely to be depressed than those whose care recipient did not have dementia. 45 El Haj et al’s French study involved professional caregivers (doctors, psychologists and nurses) asking residents with mild dementia in retirement homes about their anxiety and depression before (retrospectively) and during the COVID-19 pandemic. 46 Participants reported higher depression (Z = −2.84, P = .005, Cohen’s d = 0.80) and anxiety (Z = −2.86, P = .004, Cohen’s d = 0.81) among residents after social distancing measures were introduced. 46 This was attributed to social visitation from family and friends being prohibited, including during periods of residents’ illness or death. 46
In their scoping review to understand the impact of visitor restrictions on nursing home residents and their families, Veiga-Seijo et al note that there were very few studies focused on residents with dementia, 40 except for the Irish study mentioned above. 45 They conclude that more research is required to understand strategies and actions to enable meaningful connections between families and residents in aged care, and the needs of people with dementia in relation to their use of information and telecommunications technology during the COVID-19 pandemic. 40
Bacsu et al’s scoping review 26 on the impact of social restrictions on people with cognitive impairment included only one article in a nursing home setting which was a letter to the editor describing a case study of an 81-year-old resident living with advanced dementia in a nursing home. 44 In this case, social restrictions had led to a range of mental health problems (anxiety, depression, apathy, irritability, insomnia, restlessness) and use of Facetime had decreased anxiety, agitation and improved appetite. 44 Bacsu et al concluded that neuropsychiatric symptoms worsened in people with Alzheimer’s disease during lockdown and confinement, including depression, anxiety and agitation, apathy and cognition. 26 Living alone, having advanced dementia, and longer length of confinement exacerbated the impact of COVID-19. 26 They argue that there is an urgent need for more evidence on coping strategies for people living with dementia, particularly home-based interventions and their implementation, scale-up initiatives and evaluation studies. 26
Bethell et al undertook a scoping review (commenced prior to the COVID-19 pandemic) to summarize research literature linking social connection to mental health outcomes among long term care residents, and to identify strategies to help build and maintain social connection amongst this population during COVID-19. 27 The authors identified one study 47 undertaken prior to COVID-19 which found that social engagement for people in residential care facilities was associated with a decrease in responsive behavior (ie, verbal and physical expression) only among residents without dementia. Two studies indicated that social interaction for people with dementia was related to both positive and negative affect. 27
Another rapid review focused on the impact of social restrictions on older people in residential aged care facilities, noting that other studies on this topic are limited. 21 However, several studies reported on the impact social distancing guidelines associated with COVID-19 had upon feelings of stress and loneliness amongst older people across different settings. 21
Sims et al’s review identified many studies reporting a negative impact of social isolation upon residents’ physical and mental health, including physical, cognitive, psychological and functional decline. 38 People with dementia and cognitive impairment had difficulties understanding and abiding by social distancing measures. 38 Restricting visits by family and friends reportedly impacted residents’ health and wellbeing, with studies reporting confusion, distress and frustration for residents, and guilt, fear and worry for families. Agitation and behavioral disturbance were also reported for people with dementia, with these being associated with use of restraint. 38
Manca et al found that neuropsychiatric symptoms appeared or worsened due to COVID-19 associated enforced social isolation, for adults both with and without dementia. 35 The most common symptoms reported were delirium, agitation and apathy, particularly amongst people with dementia. 35 The authors identified a need for more intervention research and long-term studies to determine the mental health impacts of social isolation. 35
An integrative review (Hugelius et al 32 ) considered the consequences of visiting restrictions in health care services during COVID-19. In this review, one study from Hong Kong identified the impact of visiting restrictions upon feeding amongst elderly residents in nursing homes, and highlighted the potential of oral feeding to deteriorate in patients with advanced dementia. 48
Strategies and Interventions in Residential Aged Care Facilities
There were 7 literature reviews that considered strategies and interventions for people with cognitive impairment and dementia in residential aged care facilities during COVID-19.21,26,27,29,30,34,38 An issue highlighted across studies was the difficulties that people with cognitive impairment may face in terms of accessing and using telecommunications technology.29,34,37
Gosse et al considered the use of telemedicine and virtual care during the COVID-19 pandemic for people with Alzheimer’s disease and related dementias, including the use of validated diagnostic instruments. 29 One randomized controlled trial cited in this review, involving a large number of patients with dementia, found that monthly telephone follow up visits with collaborative care teams improved the quality of life of people with dementia when compared to standard care. 49 A meta-analysis determined that neuropsychological test scores done over videoconferencing were comparable to those undertaken in person. 50 However, limitations to effective cognitive screening over the phone included challenges in evaluating visuospatial impairment and naming. 29 Assessment of severe cognitive impairment can differ via videoconferencing and impairment can be rated worse over videoconferencing than when done face to face. 51 Gosse et al conclude that videoconferencing is the only telemedicine modality that could adequately replace in-person assessments to diagnose Alzheimer’s disease or related dementia, and that evidence supports videoconferencing for initiating and managing medication, connecting patients and families with services, discussing safety planning and assessing for cognitive decline. 29 They also recommend that during the COVID-19 pandemic, videoconferencing should be used to educate patients and carers about behavioral and psychological symptoms of dementia and management techniques, but that this modality should be supplemented with in person visits where possible. 29 The review also notes a cross sectional study that found inequitable access to telemedicine, as access was influenced by race, ethnicity, language, income, and caregiver support. 52
The rapid review by Liu et al explored the impact of COVID-19 on people with dementia, and thematically categorized the results from previous research into the following areas: preventing well (eg, considering facility size, reducing crowding, testing for COVID-19, implementing the use of Personal Protective Equipment [PPE]), diagnosing well (eg, using telemedicine for referral and diagnostics, considering atypical presentation of COVID-19 in people with dementia), treating well (eg, using telemedicine and encouraging GP visits), supporting well (eg, support for using telemedicine), living well and dying well (eg, using advance care planning and more rapid end of life decision making). 34 Studies indicated that people with dementia were unable to access remote consultations, due to lack of access, knowledge or confidence to use telecommunications technology. 34
Another integrative literature review which focused on the ability of telehealth to improve patient outcomes and maximize specialist care provided strong evidence for the use of telemedicine/videoconferencing for people with cognitive impairment 30 Telemedicine showed improvements in mental health and quality of life. 53 Specialist recommendations provided through telehealth were more likely to be followed where residents were at risk for depression (OR = 8.00, P = .04), or where a hospital transfer was recommended (OR = 17.97, P = .04). 54 However, barriers to using telehealth included technical issues, reimbursement challenges and failure to allocate staff time for telemedicine. 30
Sims et al explored social distancing and isolation strategies employed as a result of COVID-19 in residential care facilities, which included isolating residents and staff, zoning and cohorting residents, restricting resident activities, visitor restrictions, and changing staff working patterns. 38 Overall, Sims et al claim that there is lack of evidence for social distancing and isolation measures on the effectiveness of preventing and controlling COVID-19, and a need to evaluate the impact of such measures upon residents’ cognitive impairment, hearing and vision. 38
Ferdous undertook a thematic analysis of action plans used to reduce social isolation and loneliness, with 4 “action plans” to reduce social isolation in residential aged care facilities recommended. 21 These included technological interventions to support and maintain social engagement and access to services (eg, video chats and virtual reality for therapy or exercise), remote communication (eg, making intergenerational connections through virtual technology), therapeutic care and stress management (eg, animal assisted therapy, person-centered care, developing opportunities for engagement such as craft corners, physical exercise with virtual assistance or therapeutic touch), and preventive measures (eg, screening, disease surveillance, signage and hand hygiene). 21
In Bethell et al’s review, strategies identified that were deemed amenable to the COVID-19 pandemic environment included pain management, addressing vision and hearing loss, ensuring sleep at night, finding opportunities for creative expression, exercise, maintaining religious and cultural practices, gardening, visiting with pets, using technology, laughter therapy, reminiscing, addressing communication impairment and communicating non-verbally. There is little mention of residents with cognitive impairment or dementia in relation to the strategies identified. 27
Four articles within Bacsu et al’s 26 review considered coping strategies used by people with dementia and their carers during the COVID-19 pandemic, with strategies identified including:
maintaining daily routines including chores and leisure activities
having family support networks and/or delivery services (enabling access to groceries and medications)
maintaining social interaction through telephone or video chats, and
staying informed through the news.
Discussion
Policy and Strategies for People With Cognitive Impairment in Residential Aged Care
This review is consistent with other studies on “lessons” learnt’ and guidelines which have highlighted that people with cognitive impairment may lack understanding of or have inability to follow infection prevention and control practices (including PPE guidelines and social distancing restrictions), be unable to report COVID-19 symptoms, or may not understand the diagnosis of COVID-19.55-58 The International Dementia Alliance considered the perspectives of experts on dementia and the COVID-19 response of health and care systems from England, France, Germany, the Netherlands, Spain and Switzerland. 8 Common themes across these countries include:
The atypical presentation of COVID-19 for people with dementia (eg, presence of delirium) and the need to consider the specific needs of people with dementia in COVID-19 responses.
Concerns about the use of anti-psychotic sedative medication for wandering behavior, and issues for end-of-life care as many people died alone.
The impact of social isolation upon people with dementia and their families, including anxiety, depression and post-stress symptoms.
An initial focus on COVID-19 testing and PPE resources in hospitals in some countries, with nursing homes considered last.
The complexity of the response required by health and social services to minimize the negative impact of the pandemic on people with dementia. 8
Inequitable Use and Access to Communications Technology
This review highlighted potential issues with access to telecommunications technology for people with cognitive impairment. In a previous study, Chu et al explored social isolation policies in long-term care homes across 6 countries, highlighting the impact of social restrictions upon cognitive impairment and decline, and the need for a level of cognitive capacity to be able to use telecommunications technology. 1 One review of international guidelines on safe visiting states that using communications technology for socialization for people with cognitive impairment was not desirable or effective due to residents’ lack of acceptance and comfort with it. 19 A Dutch study on the re-opening of residential aged care facilities suggests that people with cognitive impairment may not benefit from telecommunications technology and that physical closeness may be more desirable. 59 A review also identified that videoconferencing could place an extra burden on staff workload and limited resources, however care home staff involvement was deemed crucial to the successful use of videoconferencing. 60 This may be especially true in the case of residents with cognitive impairment who require extra support to use such technologies.
Doraiswamy et al found that telehealth was being used for a broad range of services during the COVID-19 pandemic, including prevention, curative and rehabilitation services for older people. 61 The authors note that high income countries such as Australia facilitated the use of telehealth by relaxing legal restrictions for providing health care and included telehealth as a reimbursable service by insurance companies. 61 However, a small Australian qualitative study (n = 11, including 4 General Practitioners) highlighted barriers for telehealth use in residential aged care during COVID-19. 62
Social Engagement and Human Rights
This review of reviews highlighted human rights issues for people with cognitive impairment arising from social restriction and seclusion guidelines and practices, including being socially isolated in rooms without social activity, having difficulties using or having inequitable access to telecommunications technology including videoconferencing to communicate with family/friends, experiencing further physical, mental health and cognitive decline, the overuse of medication as a form of restraint, or dying on their own without seeing family and friends. Other reviews have indicated that there has been less advance care planning and palliative and end of life care during the COVID-19 pandemic.63,64
-Balancing infection prevention and control with human rights and social wellbeing and cognitive decline considerations
Social restrictions introduced during the COVID-19 pandemic have been deemed “surplus safety.” 65 A recent study has claimed that strict containment policies may not be effective in maintaining the spread of COVID-19 and its negative impacts. 66 A review of international guidelines and practices during the COVID-19 pandemic conducted by Low et al critiqued visitor bans in residential aged care, highlighting their negative impact on the wellbeing of residents, family and staff, and arguing that they contravene residents’ basic rights and likely contributed to increases in staff workload, stress and burnout. 19 They state that family caregivers should be seen as essential partners in residents’ care and that safe visiting practices should be used instead of visitor bans. 19 A balance between infection prevention and control and social participation has similarly been recommended. 58 Hugelius et al highlight that workers could experience “moral injury” as a result of visitor restrictions (which could transgress deeply held moral beliefs). 32 Greater balance is required between social distancing strategies and resident’s right to engage with family and friends, particularly during end-of-life care, and access to treatment and interventions to promote physical and social wellbeing. In addition, extra support via training and resources may be required for both informal and professional caregivers in order for people with cognitive impairment to access telecommunications technology for telehealth and social engagement purposes.
-A need for policies on social engagement
A number of policies and policy recommendations focus on the way in which people with cognitive impairment and dementia are impacted by COVID-19, physically and mentally, including as a result of social restrictions imposed.2,19,65,67 However, COVID-19 policy responses or recommendations that specifically focus on these groups living in residential aged care facilities are limited—especially efforts to reduce physical and mental wellbeing and cognitive decline through social engagement, access to healthcare and telecommunications technology. Where policies or recommendations do exist, the focus appears to be on infection prevention and control. For example, the US Center for Disease Control and Prevention (CDC) has specific recommendations for risk reduction for people with a history of dementia, including regular reminders for everyday hygiene practices (eg, alarms, or timers for hand washing) and to wear a face masks, 31 and organizations in other countries have suggested similar reminders. 68 However, recommendations from the “Aged Care and COVID-19” Australian Royal Commission report highlighted the need for aged care residents to maintain their links with family and friends. 69
In Switzerland, concerns about the fundamental rights of older people in residential care facilities during the COVID-19 pandemic led to the National Ethics Committee publishing ethical guidelines for long term care institutions which advised facilities to permit relatives to visit a dying relative in a nursing home. 8 A policy statement of the Polish Psychiatric Association (PPA) highlights that people with cognitive impairment already have limited access to health and social care, and limited knowledge and skills in telecommunications technology relied upon during the COVID-19 pandemic, further increasing their social isolation. 2 It notes that psychosocial interventions for people with dementia largely rely upon increasing social participation and implementing personalized support. 2 This is a significant point when psychosocial interventions are currently limited due to COVID-19 social distancing and social isolation/lockdown arrangements. One study which introduced a behavioral activation intervention in residential aged care during COVID-19 was not associated with better mental health outcomes. 70 Conversely, there is evidence supporting the relationship between social support and mental health, including health related quality of life for residents of aged care facilities. 71
The PPA policy statement points out that social health is a protective factor against cognitive decline, and that the social isolation of people with dementia during the COVID-19 pandemic will likely have a long-term impact upon their physical, mental and social functioning. 2 It makes a detailed range of recommendations for people with dementia across 3 levels, including: principles of daily care to reduce COVID-19 transmission; modification of medical and social care for people with dementia; and support for professional and family carers of people with dementia. 2
Research on People With Cognitive Impairment in Residential Aged Care
The findings of this review support the call for a greater focus on older people with cognitive impairment in residential aged care facilities in responses to COVID-19 and related research studies. There were few empirical studies within reviews that focused on people with dementia or cognitive impairment. There were few reviews that identified strategies to prevent and mitigate the effects of COVID-19 on people with cognitive impairment. The studies that did exist often relied upon convenience sampling or report by informal caregivers. For example, in the Suárez-González et al review, 39 the only 2 studies that included residential care homes included one where professional caregivers (self-selecting volunteers) asked people with mild dementia to self-report their mental health retrospectively for the baseline measure, 46 and in the other informal family caregivers were surveyed (a self-selecting/convenience sample) and rated the status of their family member who resided in a nursing home. 45
Additionally, further research into access to and the effectiveness of telecommunications technology for people with mild to severe cognitive impairment (and their care providers such as GPs) is required, along with specific guidance on implementing telecommunications technologies in residential aged care facilities for people with cognitive impairment.
An Overhall of Aged Care Sectors Across Countries
The issues faced by residents with cognitive impairment and dementia in residential aged care are part of greater challenges facing the sector as a whole. For example, the Australian Government’s Royal Commission into Aged Care Quality and Safety highlighted aged care staffing shortages, poor access to allied and mental health care, issues with timely access to infection prevention and control support and resources, and poor monitoring and regulation of the sector. 69 The COVID-19 pandemic had simply highlighted issues faced by the sector well prior to the pandemic, 72 and the need for a better model of health and aged care for older people. 73
Notably, the Australian Government has recently passed new aged care legislation in response to the Royal Commission into Aged Care Quality and Safety; the Aged Care and Other Legislation Amendment (Royal Commission Response No. 1) Act 2021. 74 Amongst reforms, there will be a new system for calculating aged care basic subsidies, new governance responsibilities, restrictive practices are to be used as a “last resort,” a code of conduct will be implemented, and a registered nurse at residential aged care facilities on site at all times. 74
Limitations
Limitations of our study include that it was not a systematic review, but an integrative review of review studies. Both systematic reviews (including randomized controlled trials) and other types of reviews (eg, scoping reviews, integrative reviews) that included lower levels of evidence have been included. Additionally, the quality of original studies included in these reviews was not assessed.
Conclusion
The impact of COVID-19 on people with cognitive impairment in nursing homes is significant, with higher risk, morbidity and COVID-19 mortality rates attributed to a range of factors including macro level factors (eg, lack of investment in the aged care sector, and nursing homes having lower priority in COVID-19 responses), meso level factors (eg, workplace policies within nursing homes and infection prevention and control training and measures at sites), and individual level factors (eg, the inability of residents with cognitive impairment to understand or abide by infection prevention and control guidelines, or dependence on caregivers for basic needs). Both those with and without dementia have been affected by social restrictions brought about by COVID-19, and advance care planning and end of life 75 care has also been impacted by the pandemic. Whilst telecommunications technology, telehealth and telemedicine has been encouraged to increase social engagement and provide access to diagnosis and treatment, there is mixed evidence on the use of this for people with cognitive impairment. Some evidence suggests that people with cognitive impairment and their carers have inequitable access to such technologies and require extra support to access them. This includes staff and resident training to access ICT and staff time and other resources to provide access to ICT for residents.
Whilst the impact of COVID-19 upon older people in residential aged care facilities has been recognized, it appears that few policy responses consider residents with cognitive impairment in such facilities, in particular residents with moderate to severe impairment. Social restrictions associated with COVID-19 have been effective in reducing the impact of COVID-19, however the impact on physical and cognitive functioning and mental health has been significant and raised human rights concerns. Macro-level factors that would see greater investment in the aged care sector, a more secure aged care workforce, and support for infection prevention and control measures (including external monitoring) are likely to have a greater effect on preventing and reducing the impact on COVID-19 than strategies which target individual and meso level factors. However, strategies which support the social engagement of residents, particularly those with cognitive impairment and dementia, are crucial for physical and cognitive functioning, and social and emotional wellbeing. A balance between infection control and social connection is required to maintain wellbeing and prevent further physical, cognitive and psychological decline.
Highlights
Residents with cognitive impairment have a higher risk of acquiring and dying from COVID-19, due to a range of individual, meso and macro level factors.
Advanced care planning should be incorporated into COVID-19 responses.
Social restrictions can lead to cognitive decline for all residents, particularly those with existing cognitive impairment, and are associated with mental health and behavioral problems.
There are mixed findings on the feasibility of using information and telecommunications technology (ICT) for people with cognitive impairment and there is inequitable access to ICT in nursing homes. More resources and training are required for the use of ICT in residential aged care, for staff, residents and family members, along with policies on ICT access for telehealth and social engagement.
A greater focus on older people with cognitive impairment in residential aged care facilities in responses to COVID-19 and related research studies is required, along with addressing macro level factors, such as investment in the residential aged care sector, and prioritising the sector in COVID-19 responses.
Footnotes
Author’s Note
Angelita Martini is now affiliated to University of Western Australia, Crawley, WA, Australia.
Declaration of Conflicting Interests
The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: There are no perceived conflicts of interest in the research and authorship of this paper. The first author was contracted by the Brightwater Research Centre through ZED Management Consulting to conduct the research for and write this article. The second author obtained funds for the overall research study Lotterywest and works for the Brightwater Research Centre.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Lotterywest (Grant number 420173484). There was no involvement of the funder in study design, collection, analysis and writing of reports.
Study Partners
Brightwater Care Group, Bethanie, Amana Living, Baptist Care, and Juniper.
Ethical Approval
Ethical review by the University of Western Australia, Human Research Ethics Committee (UWA HREC is 2021/ET000343).
