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The COVID-19 pandemic has put a prolonged physical and emotional strain on residents, families, and staff in post-acute and long-term care settings. Life has been particularly challenging for nursing home and assisted living residents with dementia, who account for 50% or more of all residents in PALTC. In the early days of the pandemic, when personal protective equipment (PPE) and testing were limited, PALTC staff relied heavily on social distancing as well as visitor and room restrictions to help control the spread of COVID-19. Communal dining, exercise classes, music groups, outings to local attractions and restaurants, beauty/barber shop appointments, hallway strolls, and hugs from family, friends, and staff suddenly stopped. Predictable daily routines and familiar faces were replaced with social isolation and unrecognizable caregivers who were covered in PPE for everyone’s safety.
Many residents living with dementia in PALTC settings lacked the cognitive capacity to process or even remember repeated explanations about the pandemic from exhausted staff and worried families. They did not possess the underlying capability to consistently follow protocols about social distancing, and they would promptly remove the unfamiliar and uncomfortable face masks and shields. Their perceptual impairments sometimes made window visits or video chats confusing and distressing, although some fared a little better with short, predictable phone calls with family and friends.
Individuals with dementia had varying responses to all of the changes resulting from COVID-19. Some withdrew, became increasingly apathetic, lost weight, and engaged in limited amounts of functional and physical activity. Others experienced increased anxiety, distress, confusion, and motor restlessness.
Most of what we know about the impact of COVID-19 on PALTC residents living with dementia comes from our personal clinical experiences and information that we have shared with colleagues by word of mouth, through attendance of webinars and virtual conferences, and on public platforms and online resources, such as AMDA – The Society for Post-Acute and Long-Term Care Medicine’s “Update on COVID-19” (https://paltc.org/COVID-19). Scientific evidence of the impact of COVID-19 on individuals living with dementia has been more limited. So what does research tell us?
Before the appearance of COVID-19, mortality from pneumonia was increased for older adults with dementia compared with those who were cognitively intact. However, a recent, small retrospective study comparing individuals with Alzheimer’s disease to an age-matched group without dementia showed no significant difference in the severity of COVID-19 pneumonia between the groups (J Alzheimers Dis 2020;77:67–73). Those with Alzheimer’s disease were sent to the hospital sooner by their family caregivers and long-term care staff, but their length of stay in the acute care setting was shorter. Surprisingly, individuals with Alzheimer’s disease experienced significantly less fatigue and anorexia during acute COVID-19 pneumonia. There were no significant differences in mortality. The lack of severe symptom burden and atypical presentation (diarrhea, delirium) during COVID-19 infection among those with dementia was reported (Am J Geriatr Psychiatry 2020;28:790–791).
A population-focused perspective from the Centers for Disease Control and Prevention of those with dementia but without diagnosed COVID-19 has told a different story, which is more in line with clinical experience. Deaths due to Alzheimer’s disease and other associated dementia were 20% greater during the summer of 2020 than anticipated (“’Excess Death’ Data Point to Pandemic’s True Toll,” Oct. 27, 2020; https://bit.ly/36pn3h4). To put it in even more stark terms, the CDC reported 1,000 excess deaths a week among individuals with dementia compared with the expected death rates based on projections from previous years.
Additionally, this spike in excess death rate among individuals with dementia has exceeded the expected death rates for those with other serious medical comorbidities, such as chronic respiratory disease and cancer. Although a portion of the excess death rate may be due to undiagnosed COVID-19 infection, it is likely that many of the deaths among individuals with dementia have been due to the negative impact of prolonged social isolation, physical inactivity, and more limited access to medical care.
With the need for social distancing and significant changes in environmental routines, anxiety and motor agitation were also more common among long-term care residents with dementia. The previously successful nonpharmacological interventions to manage anxiety and motor restlessness included strategies that were no longer feasible during the pandemic. An experienced nursing assistant recently shared with me that she feels that over half of her nonpharmacological tools to manage behavioral symptoms have been stripped away by strict infection control procedures due to the pandemic. In some cases, this curtailing of activities has resulted in increased use of psychotropic medication to manage the behavioral symptoms.
Given the increased mortality, significant functional and cognitive declines, and increased behavioral symptoms of distress that have occurred among individuals with dementia during the COVID-19 pandemic, we have no time to lose. Cohorting of residents with dementia can help to provide more freedom for them to move around a portion of the unit. Referrals for rehabilitation services can help to build strength and function.
Small-group activities, distanced communal dining, and fun activities that incorporate opportunities for physical activity need to become a priority to prevent further declines in function and quality of life. For example, a memory care assisted living facility has shared photos and videos of its residents and staff engaged in a successful indoor turkey trot held before the Thanksgiving holiday. The smiles and laughs from residents and staff said it all.
Outdoor and distanced visiting has become increasingly available in PALTC settings, and we also should consider increased use of compassionate care visits for our declining residents with dementia before their end of life. The Centers for Medicare & Medicaid Services have clarified and expanded the description of compassionate care visitation to include situations in which the change in the resident’s environment and routine has resulted in a traumatic experience [“Frequently Asked Questions (FAQs) on Nursing Home Visitation,” October 6, 2020; https://go.cms.gov/33x5SZl].
There has been a lack of research on the impact of the COVID-19 pandemic on all PALTC residents, particularly for residents living with dementia. We need to consider careful reopening of PALTC settings to research that is designed to intervene and collaborate with staff to restore opportunities for residents to engage in physical and functional activities and better manage neuropsychiatric symptoms.
Dr. Galik is a nurse practitioner in LTC- and community-based settings through a clinical practice with Sheppard Pratt Health System. She is a professor at the University of Maryland School of Nursing, where she teaches in the Adult-Gerontology Primary Care Nurse Practitioner Program and conducts research to improve care practices for older adults with dementia and their caregivers in long-term care. She may be reached at [email protected] .