A scoping review of COVID-19 experiences of people living with dementia

Objectives Compared with the general population, people living with dementia have been unequivocally affected by the COVID-19 pandemic. However, there is a paucity of knowledge on the COVID-19 impact on people with dementia and their care partners. The objective of this scoping review was to synthesize the existing literature on the COVID-19 experiences of people with dementia and their care partners. Methods Following Arksey and O’Malley’s scoping review framework, we searched five electronic databases (Scopus, PubMed, CINAHL, EMBASE, and Web of Science) and an online search engine (Google Scholar). Inclusion criteria consisted of English-language articles focusing on the COVID-19 experiences of people with dementia and their care partners. Synthesis Twenty-one articles met our inclusion criteria: six letters to the editor, seven commentaries, and eight original research studies. In the literature, five main themes were identified: (i) care partner fatigue and burnout; (ii) lack of access to services and supports; (iii) worsening neuropsychiatric symptoms and cognitive function; (iv) coping with COVID-19; and (v) the need for more evidence-informed research. Factors such as living alone, having advanced dementia, and the length of confinement were found to exacerbate the impact of COVID-19. Conclusion Urgent action is needed to support people living with dementia and their care partners in the pandemic. With little access to supports and services, people with dementia and their care partners are currently at a point of crisis. Collaboration and more evidence-informed research are critical to reducing mortality and supporting people with dementia during the pandemic.


Introduction
The current coronavirus disease (COVID-19 from the SARS-CoV-2 virus) is causing global morbidity and mortality, with a disproportionate burden on people living with dementia. Recent data show that dementia is the most common comorbidity in COVID-19-related deaths . In Canada, 85% of all COVID-19 deaths have been in long-term care facilities, where two thirds of people have dementia (Alzheimer's Disease International 2020b; Suárez-González et al. 2020). In the United Kingdom, the Office for National Statistics (ONS) reported that 50% of deaths in care homes from COVID-19 have been people with dementia (Alzheimer's Society 2020).
In response to COVID-19, several countries have imposed social distancing restrictions and lockdown measures in attempts to reduce the spread of the virus (Alzheimer's Disease International 2020a). These measures have included restrictions on social gatherings, limited mobility outside of the home, and restrictions and/or closure of all non-essential services such as home care services and health clinic access . However, these 'protective' measures are having adverse outcomes on people with dementia and their care partners (Anderson and Parmar 2020;McGhan and McCaughey 2020).
Without access to social supports and healthcare services, people living with dementia are experiencing greater risks not only from COVID-19 itself, but also from social isolation. More specifically, social isolation is known to increase risk of premature death from all causes (National Academies of Sciences, Engineering, and Medicine 2020). In England, the number of people dying at home from dementia and Alzheimer's disease has increased by 79.3% during the pandemic compared with the previous 5-year average (Office for National Statistics 2020). While some excess deaths may be related to missed COVID-19 diagnoses (e.g., misattribution of COVID-19 deaths to pneumonia or other respiratory illnesses, or issues of delayed reporting of COVID-19 deaths), there may also be deaths from other factors associated with the pandemic (Fineberg 2020;Woolf et al. 2020). Researchers suggest that COVID-19 confinement and social isolation may be contributing to the rapid deterioration of people with dementia and increased morbidity (Migliaccio and Bouzigues 2020;Killen et al. 2020). Despite this knowledge, there is a paucity of information on the COVID-19 experiences of people with dementia and their family care partners. However, understanding the impact of COVID-19 (e.g., challenges and coping strategies) is essential to informing policies and programs to support people with dementia and their care partners during the pandemic. Accordingly, the purpose of this review was to synthesize the existing literature on the experiences of COVID-19 on people with dementia and their family care partners.

Research design and methods
This study was guided by Arksey and O'Malley's (2005) scoping review framework that consists of five stages: (i) identifying the research question; (ii) searching for relevant studies; (iii) selecting the studies; (iv) charting the data; and (v) summarizing and reporting the results. While systematic reviews assess the quality of the research, a scoping review maps the literature on an emerging topic and identifies knowledge gaps to inform policy and research (Arksey and O'Malley 2005).

Identifying the research question
The objective of this scoping review was to synthesize the existing literature on the experiences of COVID-19 on people affected by dementia. More specifically, the review question was: What are the experiences of people living with dementia and their family care partners during the COVID-19 pandemic?

Search strategy
Relevant articles were retrieved by searching five electronic databases including Scopus, PubMed, CINAHL, EMBASE, and Web of Science. Google Scholar was also searched to identify other relevant articles. The keywords used for the search are shown in Table 1. The search timeline focused on articles published between January 13 and September 15, 2020. January was selected as the start date for the timeline as public health officials confirmed the first reported case of COVID-19 outside of China on January 13, 2020 (World Health Organization 2020).

Inclusion and exclusion criteria
Articles were included in this review if they met five inclusion criteria: (i) original research, commentaries/editorials, or letters to the editor; (ii) written in the English language; (iii) fulltext, peer-reviewed journal articles; (iv) published between January 13 and September 15, 2020; and (v) focused on the COVID-19 experiences of people with dementia (e.g., community-dwelling and/or care facilities) and/or their family care partners. Exclusion criteria consisted of studies that were (i) published in languages other than English; (ii) not published between January 13 and September 15, 2020; and (iii) not focused on the review's objective but rather clinical outcomes in terms of the incidence and mortality of dementia comorbidities in COVID-19 patients.

Study selection and data charting
This search identified 420 articles for possible inclusion in the review. Relevant search findings were imported into the bibliographic management software RefWorks, followed by a systematic de-duplication. After 206 duplicates were removed, the titles and abstracts of 214 articles were screened for relevancy independently by two reviewers. A total of 183 articles were excluded as they did not meet the inclusion criteria. Any discrepancies or uncertainty related to the data inclusion were discussed between the two reviewers. The full texts of the remaining 31 articles were reviewed, and 10 articles were excluded based on the full-text assessment. The final number of articles included in the scoping review was 21. Figure 1 shows the flowchart of the literature search and screening process. The articles were charted into a table using the following information: article type; authors; country; purpose; methods; sample; and findings. A description of the 21 articles is provided in Table 2.
In the literature on COVID-19 experiences of people with dementia and their care partners, five main themes were identified: (i) care partner fatigue and burnout; (ii) lack of access to services and supports; (iii) worsening neuropsychiatric symptoms and cognitive function; (iv) coping with COVID-19; and (v) the need for more evidence-informed research.
(i) Care partner fatigue and burnout Studies indicate that COVID-19 restrictions and imposed measures of confinement have added significant strain to the pre-existing workload of family care partners of people with dementia (Cohen et al. 2020;Vaitheswaran et al. 2020). More specifically, ten articles discussed issues of care partner fatigue 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). For example, COVID-19 restrictions have increased care partners' workloads by limiting and/or terminating access Care partner coping supports included gardening, alone time, going outside, making masks, spending time on cell phones and playing computer games. AD, Alzheimer's disease; PwD, people living with dementia; MCI, mild cognitive impairment; PD, Parkinson's disease to home care, respite, daycare programs, meal programs, medical specialists, health services, and supports (Cohen et al. 2020;Roach et al. 2020). The COVID-19 pandemic has intensified the pre-existing issue of limited supports and services available for care partners of people with dementia (Savla et al. 2020). In the literature, specific challenges experienced by family care partners 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 persons with dementia , and restricted/terminated formal supports during the lockdown (e.g., respite care and home care services) (Barros et al. 2020). Consequently, care partners experienced increased frustration and work overload because they were solely responsible for providing care (Cohen et al. 2020;Savla et al. 2020).
Greenberg and colleagues (Greenberg et al. 2020) assert that without home care, care partners face increased challenges by having to perform complex medical tasks such as tube feeding, colostomy and catheter care, injections, and home dialysis. Accordingly, issues related to the care partner's mental health Roach et al. 2020), physical health (Migliaccio and Bouzigues 2020), and burnout were predominant throughout the literature (Barros et al. 2020;Cohen et al. 2020;Killen et al. 2020l;Canevelli et al. 2020;Savla et al. 2020;Vaitheswaran et al. 2020). Moreover, studies suggest a correlation between the level of care partner workload and the length of at-home/community-dwelling confinement, especially for care partners of people with advanced dementia (Cohen et al. 2020;Vaitheswaran et al. 2020).
(ii) Lack of access to services and supports Several articles described the challenges of the COVID-19 lockdown and closure of non-essential businesses on people living with dementia. For example, Roach et al. (2020) assert that the COVID-19 lockdown severely impacted people living with dementia by altering their daily routines, limiting physical activity, increasing social isolation, and restricting and/or terminating health care services and supports. Similarly, other authors suggest that COVID-19 confinement contributed to increased physical inactivity, a lack of purposeful activities, limited intellectual stimulation, and increased social isolation for people living with dementia .
In discussing the challenges of COVID-19 confinement, many authors described limited access to health services and programs. More specifically, these services included reduced or terminated access to day programs (Palermo et al. 2020), respite care (Savla et al. 2020), cognitive stimulation programs (Lara et al. 2020), meal programs, home care services (Greenberg et al. 2020), neurological rehabilitation therapy  (Cohen et al. 2020), physical activity programs Edelman et al. 2020;Roach et al. 2020), health clinics (Killen et al. 2020;Migliaccio and Bouzigues 2020), and dementia care specialists (Vaitheswaran et al. 2020).
The confinement from COVID-19 and physical distancing measures also contributed to social support challenges for people with dementia. Boutoleau-Bretonniere et al. (2020) assert that social gatherings, volunteer events, and even religious activities were cancelled, which impacted persons living with dementia. Moreover, people with dementia living in long-term care homes were recognized as being especially vulnerable to the isolating effects of COVID-19 (Edelman et al. 2020). Several articles noted that enforced isolation in long-term care homes has contributed to an increase in loneliness, depression, boredom, apathy, anxiety, irritability, restlessness, and difficulty sleeping (Padala et al. 2020), and to an overall decreased quality of life for people with dementia (Velayudhan et al. 2020).  2020) found that confinement negatively affected neuropsychiatric symptoms (e.g., depression, anxiety, and agitation) and cognition in people with Alzheimer's disease with low pre-pandemic cognitive function. Similarly, Vaitheswaran and colleagues (2020) reported increasing behavioural and psychological symptoms in people with dementia, such as disruptive behaviours, symptoms of anxiety, irritability, expressions of being upset about wearing facemasks or others wearing facemasks, and sleep disturbances. Other articles also suggested worsening neuropsychiatric symptoms in confinement, such as agitation, apathy (Lara et al. 2020), anxiety (Chen and Chen 2020;Cohen et al. 2020), depression (Velayudhan et al. 2020), sleep disorders (Canevelli et al. 2020), and deteriorating cognitive function (Barros et al. 2020;Lai et al. 2020;Palermo et al. 2020;Roach et al. 2020). In particular, people with dementia who lived alone (Goodman-Casanova et al. 2020;Wang et al. 2020) or who had lower levels of cognition were identified as being more vulnerable to experiencing negative neuropsychiatric effects from the lockdown (Boutoleau-Bretonniere et al. 2020;Cohen et al. 2020).
(iv) Coping with COVID-19 Despite the numerous articles documenting the COVID-19 challenges, only four articles discussed the coping strategies used by people with dementia and their care partners. A study on rural family care partners identified different coping strategies, including gardening, having alone time, being outdoors, making protective masks for care aides, spending time on their cell phones, and playing computer games (Savla et al. 2020). Three other articles described coping strategies used to address confinement by persons with dementia and their care partners, including maintaining daily routines with chores and leisure activities (e.g., reading, computer games, and exercise), having family support networks and/or delivery services to access groceries and medications, having social interaction through telephone or video chats Canevelli et al. 2020), and staying informed by following the news (Goodman-Casanova et al. 2020). Key to many of these descriptors of coping was engagement with technology.

(v) Need for evidence-informed research
In discussing COVID-19, eleven of the articles identified the need for more evidence-informed research on home-based interventions to support people with dementia during the pandemic 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). For example, the literature highlighted the need for more research on the implementation (e.g., accessibility, ease of use, affordability, and barriers) of home-based technological interventions such as physical exercise programs , cognitive stimulation therapy (Cheung and Peri 2020), and the expansion of telemedicine services (e.g., home video consultations, prescription refills, and virtual access to health specialists) during the pandemic (Edelman et al. 2020;Lai et al. 2020;Canevelli et al. 2020;Chen and Chen 2020;Vaitheswaran et al. 2020).
While technological interventions are not new, home-based interventions are relatively newly available to people with dementia and their care partners (Padala et al. 2020). Consequently, people with dementia who live alone  or care partners may struggle with technology and require instruction, online training, and tools to support their usage of technology (Barros et al. 2020;Vaitheswaran et al. 2020). As such, Cheung and Peri (2020) suggest that future research is necessary to understand the implementation and technological challenges from the perspective of people with dementia and their care partners.
Articles also highlighted the need for more research on the implementation and evaluation of virtual social support interventions for people with dementia and their care partners (Migliaccio and Bouzigues 2020). For example, Greenberg et al. (2020) note that social interaction can be facilitated by smartphone technology and computer applications such as FaceTime and WhatsApp. Given the lockdown and visiting restrictions within institutions, technology and social networking platforms were recognized as being especially important for people in longterm care and nursing home facilities (Edelman et al. 2020;Padala et al. 2020). However, Padala et al. (2020) assert that the use of such applications needs to be studied and evaluated to assess the ease of access and usage in institutional care.

Discussion
People with dementia and their care partners have experienced unprecedented burden and mortality from the COVID-19 pandemic. Increased age, frailty, and health conditions often associated with dementia increase the risk of complications from COVID-19 (Alzheimer Society of Canada 2020; Centers for Disease Control and Prevention 2020). Despite these risks, there are no known attempts to examine the current state of the literature on the impact of COVID-19 (e.g., challenges, barriers, supports and coping strategies) among people living with dementia. However, understanding the COVID-19 impact is essential to informing policies and programs to support people with dementia during the pandemic. Accordingly, 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.
This scoping review found that COVID-19 has severely impacted the lives of people with dementia and their care partners (Roach et al. 2020;Savla et al. 2020). For example, our study's findings suggest that people with dementia are experiencing substantial challenges from COVID-19, such as care partner fatigue and burnout, confinement challenges, and worsening neuropsychiatric symptoms and deteriorating cognitive function. These challenges resonated across the various types of manuscripts examined in this review (e.g., commentaries, letters to the editor, and original research studies). Moreover, factors such as living alone (Goodman-Casanova et al. 2020), having advanced dementia, and the length of community-dwelling confinement were found to exacerbate the detrimental impacts of the pandemic (Boutoleau-Bretonniere et al. 2020;Cohen et al. 2020).
With restricted and/or terminated access to formal services (e.g., home care, meal programs, and respite), family care partners for people with advanced dementia were identified as being particularly vulnerable to experiencing care partner burnout from COVID-19 (Savla et al. 2020). Anecdotally, in our clinical practice, we have observed additional challenges for families living with dementia than those published in the literature. Some examples of these challenges include difficulty recruiting formal/paid help, issues with learning how to manage complex tasks (e.g., incontinence issues, medication management, feeding, and bathing) without educational training, and exacerbated family tension and disagreements regarding care planning for a loved one with dementia.
Findings from this scoping review have important research and policy implications. In terms of directions for research, this review found that there is an urgent need for more research on the COVID-related coping strategies and supports for people living with dementia and their care partners. While many articles identified the challenges of COVID-19, only a handful of articles addressed coping strategies for people living with dementia Goodman-Casanova et al. 2020;Canevelli et al. 2020;Savla et al. 2020). With restricted access to services, the pandemic has intensified the pre-existing workload and lack of services for family care partners (Savla et al. 2020). As such, care partners are experiencing increased stress, mental health issues, fatigue, and burnout. Consequently, more evidence-informed research is needed to examine coping strategies and identify best practices to support care partners in the pandemic (Roach et al. 2020;Savla et al. 2020;Vaitheswaran et al. 2020).
In addition, more evidence-informed research is required on home-based interventions (e.g., cognitive therapy, exercise programs, social support activities, and telemedicine) for people with dementia and their care partners. While technological interventions are not new, home-based interventions are relatively newly accessible to care partners. Accordingly, more research is needed to examine the implementation (e.g., accessibility and ease of use), scale-up (e.g., geographical expansion to rural and remote communities), and evaluation of home-based interventions for people with dementia and their care partners.
In developing COVID-19 policies to support persons with dementia, there is a critical need for collaboration and more evidence-informed research involving people with dementia and their care partners. Although several articles (e.g., letters to the editor and commentaries) have been written on COVID-19 and dementia, relatively few research studies have been conducted with people living with dementia. With personal expertise and lived experience of COVID-19, people with dementia can offer valuable knowledge and insight to identify COVID-19 challenges and mitigation strategies in the pandemic. Thus, partnerships and collaborative research are essential to developing effective COVID-19 policies to support people with dementia and their care partners.

Limitations
This review was limited to English-language, peer-reviewed literature published between January and September 2020. While a rigorous search method was performed, it is possible that relevant literature was excluded in terms of language and timeframe. For example, studies in different languages may provide a more comprehensive understanding of the COVID-19 experiences on people with dementia. Also, this review's timeframe only captures the literature from the first wave of the COVID-19 pandemic. A follow-up review is required to compare and analyze literature focusing on the second wave of the pandemic.
Another limitation of this review is that we did not search preprint repositories but focused specifically on peer-reviewed journal articles from electronic databases. As such, it is possible that some relevant articles may have been missed. Given the rapidly evolving COVID-19 situation, future reviews may consider searching preprint servers as a means to finding timely research. However, reviews focusing on preprint servers should be conducted with caution as preprints have not undergone peer review, and a recent article suggests a high retraction rate among COVID-19 articles and preprints (Yeo-Teh and Tang 2021).
In addition, there are some limitations related to the generalizability of our study's findings in terms of gender and residence. In the literature, only two studies briefly addressed gender. For example, women were more often identified as family care partners (Cohen et al. 2020) and experienced higher levels of burden and workload than men (Vaitheswaran et al. 2020). However, more research is needed to examine the COVID-19 impact in relation to sex and gender for people living with dementia and their care partners. More specifically, consideration of COVID-19-related risk and protective factors for men and women may help to inform and accelerate interventions to reduce mortality and improve quality of life for people with dementia. In terms of residence, the majority of the studies focused on community-dwelling people (e.g., individuals living in private residences) with dementia. For example, only one study focused on a person living with dementia in a care facility (Padala et al. 2020). Consequently, future research is needed to examine the COVID-19 impact on people living with dementia in care facilities.

Conclusion
There is a growing need for more research to address the impact of COVID-19 on people with dementia and their care partners. Compared with the general population, people with dementia are a vulnerable population with risks not only from COVID-19 but also from social isolation and the physical distancing methods used to mitigate the pandemic's spread. Confinement measures combined with the lack of access to health and support services have severely impacted the lives of people with dementia and their care partners (Savla et al. 2020;Wang et al. 2020). More specifically, the findings from this review suggest that people living with dementia are experiencing substantial challenges from COVID-19, such as care partner fatigue and burnout, confinement challenges, and worsening neuropsychiatric symptoms and deteriorating cognitive function. Despite these COVID-related challenges, only a few articles addressed coping strategies and supports for people with dementia and their care partners. With little access to supports and services, people with dementia and their family care partners are currently at a point of crisis. Urgent action is needed to support people with dementia and their family care partners during the pandemic.
In developing COVID-19 policies to support people with dementia, there is a critical need for collaboration and more evidence-informed research involving people with dementia and their care partners. With personal expertise and lived experience of COVID-19, people with dementia can offer valuable knowledge and insight to address COVID-19 challenges and mitigation strategies. Collaboration and more evidenceinformed research are critical to reducing mortality and supporting people with dementia during the pandemic.

Code availability N/A.
Author contributions JDB conceived the idea and design of this review with MEO. JDB and MEO screened the references for inclusion in the review. CW, LP, MBW, and SS provided expert review on the article selection. JDB and MEO performed data extraction and analysis. JDB wrote the first draft of the manuscript and MEO, LP, MBW, CW, and SS provided revisions and critical review of the manuscript.
Funding Juanita Bacsu is a PDF whose trainee salary is partially funded by Team 15 in the Canadian Consortium on Neurodegeneration in Aging (CCNA). CCNA is supported by a grant from the Canadian Institutes of Health Research with funding from several partners, including the Saskatchewan Health Research Foundation, the Centre for Aging and Brain Health, and the Alzheimer Society of Canada (ASC). The ASC COVID Task Force was a particular catalyst for this work.
Data availability Additional data may be available upon written request to the first author.

Declarations
Ethics approval This scoping review does not contain studies with human participants or animals performed by any of the authors, and ethics approval was not required.

Conflict of interest
The authors declare that they have no conflict of interest.
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