Caring for nursing home residents with dementia during the COVID-19 pandemic: Perspectives from administrators

Nursing home residents have been enormously impacted by COVID-19 due to their high risk for adverse outcomes,1 congregate living setting,2 and the negative sequelae experienced as a result of restrictions implemented to mitigate transmission. Prior studies have found that residents experienced increased loneliness, cognitive and functional decline, depression, and weight loss over the course of the pandemic.3-5 These effects may be amplified for residents with dementia, however, there is limited research examining the impact of COVID-19 on this population. This report presents findings from interviews with nursing home administrators: their observations of COVID-19's impact on residents with dementia, challenges encountered, and strategies employed to manage care for residents with dementia during the pandemic. About 156 interviews were conducted July 2020–December 2021 with administrators of 40 nursing homes that varied by healthcare market and organizational characteristics (Supplemental Figure 1 and Table 1). Interviews examined administrator perspectives as they managed nursing homes across the stages of the pandemic.6, 7 This report synthesizes their responses to questions regarding the care of residents with dementia. Participants were recruited by email to participate in 60-min videoconference or telephone interviews every 3 months for a total of four interviews each. Consent to audio-record was obtained and interviews were transcribed and de-identified. Transcripts were analyzed to identify overarching themes using a modified grounded theory approach to thematic analysis.8, 9 Data were coded using NVivo Version 12 Plus. Table 2 presents the four themes that emerged and illustrative quotes. Theme one presents administrator observations of the disorienting effects COVID-19 precautions had on residents with dementia. Administrators noted that residents with dementia did not have the same awareness or fear of the virus as residents without cognitive impairment, making it difficult for them to comprehend why changes were occurring in their environment. This, coupled with the disorienting effects of personal protective equipment and room changes that occurred during outbreaks, contributed to changes in behaviors, mood, and cognition. Administrators noted that they tried to avoid relocating more cognitively-impaired residents whenever possible. The second theme summarizes infection control challenges and strategies administrators described for residents with dementia. One challenge was with the ability to communicate about a novel virus or new infection control measures. One administrator noted that they tried to use familiar language like “flu season” or “cold season” to help orient residents with memory deficits and explain the need for precautions. Wandering behaviors were identified as a particular challenge contributing to viral transmission. Memory care units were noted as high risk for outbreaks, due to resident wandering and the inability to keep residents isolated. Throughout, administrators highlighted concerns regarding balancing infection control priorities with resident autonomy. Theme three reflects administrator observations of the impact and challenges of visitation and activity restrictions for residents with dementia. They noted that disruption in daily routines and the lack of regular visitation with loved ones contributed to cognitive decline, weight loss, depression, and loss of recognition of family members. Administrators described challenges and strategies for facilitating virtual visits and other modified visitation for residents with dementia. The final theme encompasses lessons learned by administrators. Administrators highlighted the importance of relationships between staff and residents, and the need to individualize interventions for residents. They also noted the need to augment staffing and bring in additional resources such as mental health counseling to provide additional support. A number of lessons can be learned from the challenges administrators identified. These may inform operational planning to improve care for residents with dementia during future infectious disease outbreaks and other emergency situations in nursing homes. First, emergency preparedness plans must be developed that specifically address the needs of residents with dementia. Administrators highlighted visitation restrictions and environmental change as particularly detrimental. As such, emergency preparedness protocols should include resident cohorting and isolation procedures that minimize environmental disruption, a risk stratification system with accompanying care plans for high-risk residents, plans for maintaining communication with families and caregivers, appropriate safety modifications for visitation, and staffing contingency plans to ensure care continuity. Second, the physical environment within nursing homes should be assessed to mitigate risk for persons with dementia. Administrators in the study cited memory care units as being particularly high risk for outbreaks. Accordingly, these units should be prioritized for improved ventilation systems, physical spaces that allow for social distancing and resident observation, and hand hygiene stations. During outbreaks, these units should be prioritized for frequent sanitation, regular surveillance testing, and close monitoring of staff adherence to infection control measures. Finally, this study raises important areas for staff education and training including delirium prevention and management, communication strategies for persons with dementia, and behavioral and mental health. Training staff, evaluating existing resources, and making comprehensive emergency preparedness plans are all vital steps to ensuring that nursing home residents with dementia receive high-quality care during emergency situations. All authors meet the criteria for authorship stated in the Uniform Requirements for Manuscripts Submitted to Biomedical Journals. Emily Gadbois made substantial contributions to conception and design, acquisition of data, analysis and interpretation of data, drafting of the article, and final approval of the version to be published. Joan Brazier, Amy Meehan, and Renee Shield made substantial contributions to conception and design, acquisition of data, and analysis and interpretation of data, revising the article critically, and final approval of the version to be published. Courtney Hawes, Elizabeth White, Aseel Rafat, Fangli Geng, Momotazur Rahman, and David Grabowski made substantial contributions to the analysis and interpretation of the data, revising the article critically, and final approval of the version to be published. This work was supported by the Warren Alpert Foundation. David Grabowski reports receiving fees unrelated to this work from the Medicare Payment Advisory Commission, AARP, Analysis Group, and GRAIL. None of the other co-authors report any potential conflicts of interest. The sponsor played no role in the design, methods, subject recruitment, data collection, analysis, or preparation of the paper. Supplemental Figure S1. Facility characteristics. 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