Author: Joseph Hernandez
Abstract
COVID-19 has disproportionately affected dementia residents in long-term care facilities because of issues including but not limited to understaffing, social isolation, and high infection rates.1 Recent testing and vaccination efforts have helped to combat this suffering, but successful testing and vaccination administration is frequently hindered by the use of personal protective equipment (PPE) by CNAs, RNs, and other healthcare professionals in long-term care facility settings. This is largely because PPE interrupts visual expressions and facial recognition, prevents compassionate touching, hampers verbal communication, among other damaging effects on people living with dementia (PLWD).2 This paper reviews relevant literature on the effects PPE has on patient-healthcare worker interactions specifically during COVID-19 testing and vaccination in long-term care facilities. Qualitative data gathered from virtual focus groups composed of long-term care facility staff members supplements the review. An analysis of these focus groups offers insight into the personal experiences of healthcare workers regarding PPE and the negative impact it can have on successfully testing and vaccinating dementia residents. Possible strategies to overcome the obstacles PPE places on the path to effective vaccination and testing are discussed, including performative dance routines, mock nasal swabs, and other re-approach techniques. Long-term care facilities need to continue to utilize PPE to minimize the spread of COVID-19 infection amongst residents and staff, but its detrimental effects on testing and vaccinations should not go unnoticed. By identifying specific strategies that healthcare workers implement to mitigate PPE’s interference with testing and vaccination processes, we can improve the overall experience and efficacy of COVID-19 infection control for dementia patients within long-term care facilities.
Background
The novel coronavirus SARS-CoV-2 (COVID-19) has dramatically altered the landscape of healthcare, posing imminent risk to certain individuals. Nursing home residents, in particular those with cognitive impairment, have arguably been burdened by this virus more than any other vulnerable population.3 In fact, in six states, over half of the reported deaths due to COVID-19 have come from long-term care facilities.4 While COVID-19 is the cause of death, there are also a collection of factors stemming from COVID-19 that significantly harm these residents. For example, social isolation and solitariness, which are not physiologically determined to be the cause of death, still diminish the quality of life for the residents and can often accelerate cognitive decline.5
Normally, being part of a sympathy group, playing Bingo, eating meals together, and watching movies in a common area are effective ways for dementia residents to prevent social isolation and feelings of loneliness and depression.6 But after long durations without visitors, especially family members, it is common to see symptoms of insomnia, anxiety, and depression. The temporary discontinuance of family visits, community building events, and other cognitive stimulation programs in long-term care facilities due to COVID-19 has led to lower psychological well-being among residents with cognitive decline.7 And while PPE is commonplace throughout these facilities to serve as a health barrier of protection between residents and staff members, it simultaneously inhibits familiarity, recognition, and quality of interaction for those with dementia.8 This can lead to difficulties in interacting with residents, as they are placed in unfamiliar environments with unrecognizable beings in gowns, face shields, and masks.
Review of Literature
This virus’s recency has limited the amount of literature available on PPE in the context of COVID-19 testing and vaccinations. Still, researchers have explored different components of PPE’s relationship to resident-healthcare worker interactions, including White et al.’s analysis of nursing staff perspectives.9 This 2020 study focused on results from electronic surveys to gather qualitative data on overarching themes of its participants’ responses. While PPE was a consistent point of discussion in the paper, the setting was PPE availability, or lack thereof, instead of the role it plays in experiences for resident testing and vaccinations. A literature review article from Bolt et al.10 points to the importance of inspecting psychological symptoms in the field of palliative care for PLWD during the COVID-19 outbreak. Although the authors argue that “physical touch and social interactions are important to enhance the wellbeing of people with severe dementia” (3), they fail to consider how the usage of PPE prevents skin-to-skin touch, visual expressions, and other communicative strategies healthcare workers use to comfort dementia residents.
The non-profit organization UsAgainstAlzheimer’s reiterates the importance of testing PLWD in long-term care facilities, 2 emphasizing the need for standard protocols in COVID-19 testing. But these researchers and organizations frequently do not consider the implications that PPE may have in accomplishing this testing, including the lack of facial recognition and the formidable appearance of gowns and masks to residents. There are parallels in the literature concerning vaccinating PLWD in these care facilities. Judith Graham similarly highlights how crucial vaccinations will be in preventing care facility deaths in a Kaiser Health News piece,11 designating consent, distribution, and side effects as the main hurdles in successful vaccination campaigns. But she fails to consider the lapse in visual, verbal, and physical communication generated from PPE as problematic to the vaccine efforts.
Even when the literature does confront the harm PPE may cause in an effective resident-healthcare worker interaction, there is still an absence of discourse on how this precisely affects COVID-19 testing and vaccination. For instance, Roger Gil and Eva Arroyo-Anlló discuss the difficulties PLWD face in their interactions with staff covered in face masks by identifying the relationships between facial expressions, hearing, emotion, and recognition.4 Freud et al. also mention how face masks have created an additional barrier in face perception and processing. However, none of these studies specifically examine how face masks and other forms of PPE shape the experiences of PLWD in care facilities in the context of COVID-19 vaccination and testing. Further, studies have not addressed potential techniques long-term care healthcare providers can employ to minimize the damaging effects of PPE during their interactions with dementia residents’ vaccinations and testings.
Methods
In order to gain an appreciation of the experiences of vaccination and testing in long-term care facilities as they relate to PPE, five virtual focus groups were held on Zoom. Each Zoom meeting lasted between 60 and 90 minutes. These focus groups were held at various times throughout the day, with starting times of 12pm (twice), 6pm (twice), and 4pm (once). All times listed are in Eastern Standard Time (EST).
The process of recruiting participants received approval from the institutional review board (IRB) company Advarra, Inc. In order to ensure diversity of participants based on race and ethnic background, only long-term care facilities with a minimum of 15% minority residents were in the pool of those to be selected. Corporate leadership of each long-term care facility was contacted by mail with invitations for study participation. Individual long-term care facility leaders were asked to recruit participants to the Zoom focus groups through the distribution of a flier that included directions for how to sign-up for the focus groups. Long-term care facility points-of-contact were followed-up with phone calls and emails to answer any questions regarding the study goal or process.
Zoom meeting links and instructions were sent to individual participants prior to the assigned meeting times. In each focus group, a facilitator asked questions regarding barriers and challenges of COVID-19 testing and vaccinations within the participants’ respective care facility. Participants answered verbally. Each Zoom meeting was audio recorded, downloaded, and then later transcribed in a document that maintained anonymity of long-term care staff workers and facility names and locations. The facilitator remained the same throughout all five focus groups.
The participants came from a variety of long-term care facilities spanning several geographic regions. Of the 58 participants, 42 of them completed a demographic survey. For those who filled out the survey, the following demographic data was collected: 71% White, 24% Black, 5% preferred not to answer. The age data collected was as follows: 97% female. The work history data collected was as follows: 69% had worked in skilled nursing facilities (SNF) for five or more years, and 67% worked in a nursing job category (CNA, RN, and LPN). Other staff members on the call included activity directors, life enrichment coordinators, and staff in social services.
Questions asked to the participants pertained to their experience with COVID-19 testing, specifically on PLWD, and what has worked well and what has not. Participants were also inquired about their general trust in testing results and how infection control is managed in their specific long-term care facility. The facilitator also asked about general trust in the vaccine and the significance of vaccinating PLWD in long-term care facilities. Finally, participants were asked about challenges and barriers to vaccinating PLWD. Qualitative results were analyzed following the transcription process. This analysis took place in the context of a larger study funded by the National Institute on Aging (NIA) focusing on COVID-19’s disproportionate effects on specific populations.
Results
Throughout the five focus groups, there seemed to be an overwhelming consensus among the long-term care healthcare workers that the lack of facial recognition stemming from PPE has complicated the testing and vaccination process for PLWD in long-term care facilities. A participant who is an RN involved in the testing process remarks that “It’s difficult if they [the residents] are in a red-zone because they’re all PPE’d up and you can’t see their face[s].” This “red-zone” is a location within the care facility with high density COVID-19 cases which therefore results in greater usage of PPE and social isolation measures.
In one focus group, three nurse-identifying staff members agreed that visual expressions play a key role in keeping residents calm and happy during testing and vaccinations, using words and phrases including “gain their trust”, “comfortable”, and “calming presence”. As a consequence, the majority of participants who spoke during the focus groups concurred that wearing face masks has drastically weakened a sense of familiarity and community. One staff member states the harsh truth: “As the days have gone on, honestly, it’s just part of the norm. They don’t know what our faces really look like anymore.” When residents are unaware of who is approaching them with a swab or shot, this can lead to hostility, complicating testing and vaccination efforts. Another staff member echoes this message, claiming that just the sight of the PPE itself was enough to “trigger” the dementia residents, even before the actual testing and vaccination, which often further irritates them. While there is no set appearance or behavior of a “triggered” resident, one nurse-identifying staff member recalls how “It’s really hard for some specific residents individually. I’ve heard stories: the second they walk in, they cover up their face and they bury their heads. They may have dementia, but they know what you’re coming in to do. And so it’s been pretty traumatizing I think for quite a few unfortunately.” This traumatizing experience can delay the testing and vaccination process and potentially lead to ineffective administration if the resident is moving or resisting.
Apart from changes in facial recognition, staff members consistently mentioned how the lack of compassionate contact has worsened the experiences of PLWD as they prepare for testing and vaccination. One participant describes how the deprivation of these relationship-building actions, including touch, is taxing on the residents’ psychosocial health: “[It’s] as simple as being able to deliver compassionate touch or hugging. And the difference of being deprived from that — the toll that it absolutely is taking on them.” Ideally, staff members would establish a good rapport prior to testing and vaccination to prevent startling the resident. While one participant claims that nursing staff can still build this rapport verbally with phrases along the lines of “Can I get some of your boogers?” or “I need to clean out your nose”, another participant in a different focus group notes that it is undeniable that “[their] residents want to see [their] faces.” Indeed, verbal reassurance is not always sufficient in easing the residents, as one staff member explains: “For some of them, it’s a little bit harder because they don’t understand what’s going on or what you’re doing to them. And some really try to push you away.” Most of these dementia patients have not had to experience a nasal swab in recent times, and having the healthcare worker covered up clearly does not make this process any easier. Despite these impediments, there was a common message of perseverance from the staff members — without it, testing and vaccinating PLWD is nearly impossible.
Staff members described different strategies they have implemented to facilitate the COVID-19 testing and vaccination processes to compensate for the lack of familiarity and recognition. One long-term care facility encourages the nursing staff to mock the nasal swab for the residents to watch with the hope of preventing refusals. Others allow their residents to hold the Q-tip so they can better understand what exactly will be placed in their nose. Another staff member does a subtle dance routine to identify themself among the residents as someone they can trust. These so-called re-approach techniques can be quite effective according to the staff members. According to a nurse-identifying participant, they depend on “going in and getting down at their eye level, smiling, pausing, waiting for them to respond, and giving them an endorphin boost. Like saying ‘I love that sweater’ or something to make their eyes twinkle.” No matter what the individual strategy is, a nurse-identifying staff member claims the ultimate goal is to find “different ways to get into their world.”
Knowing the resident personally can be critical in overcoming the fear and hesitation from dementia residents during testing and vaccinations. One nurse who administers the nasal swab test considers their experience:
I know their [the resident’s] kids’ names, so I talk to them about that and how ‘They want you to get tested. It doesn’t hurt — it’s just a Q tip.’ And I let them look at it. So if someone is a little bit challenging… you may have to leave and come back with a different person.
It is evident that the long-term care facility staff are doing what they can to counter the disorientating effects of testing and vaccination after donning their PPE.
Discussion
Most long-term care facility staff will agree that testing and vaccinations are critical in eventually returning to an environment with family visits, lowered PPE measures, and greater social activity. Even so, there is a lack of a spotlight in recently published literature on how PPE can inhibit vaccination and testing efforts, and the corresponding strategies nursing staff can make use of to counteract these hurdles. Bolt et al.’s study emphasizes how physical touch and strong social cues in resident-healthcare worker interactions are vital in sustaining the positive well-being of dementia residents. But there is no exploration into the role PPE plays in obstructing these interactions, especially as it pertains to COVID-19 testing and vaccination. Multiple participants in the Zoom focus groups spoke about how the use of PPE during this pandemic has changed the way healthcare workers have to approach their residents. One nurse-identifying participant puts themself in the shoes of a dementia resident during the testing process: “[We] have the full face mask and the shield and they [the residents] are not seeing our faces. And so I think that from a dementia standpoint, it would be super scary.” Certainly this is one reason why multiple participants are noticing their residents’ hesitancy and fear to be tested or vaccinated.
And while Freud et al. concluded that face masks and other forms of PPE impair facial recognition and visual expressions, there seems to be an absence of possible strategies long-term care facility healthcare workers can learn from and utilize to overcome challenges in interaction dynamics. Face shields and masks can even limit verbal communication, which is pertinent to dementia residents who commonly are hard of hearing already. The healthcare workers discussed popular techniques to humanize staff-resident interactions despite these debilitating effects. These include re-approach tactics, including performative routines to identify oneself, having conversations about personal details of the resident’s life, and getting down to the resident’s level if they are in a wheelchair. Another method for testing specifically involves playfully asking to clean a patient’s boogers prior to the swab. Compliments of the resident can also prove effective.
The review of literature found that dementia residents are already experiencing accelerated cognitive decline and worsened psychological well-being due to COVID-19 and its public health policies. These literature findings were supplemented with perspectives from long-term care staff members caring for PLWD to address PPE’s negative effects on vaccination and testing efforts. However, PPE is still necessary for infection control and flattening the curve in long-term care facilities, so the elimination of it is unrealistic and would counterintuitively lead to increased COVID-19 cases anyway. Still, there is optimism among staff that alternative methods of facilitating testing and vaccinations can be effective, and the majority reached a consensus that emphasizing and increasing the frequency of usage of these re-approach and humanizing strategies nationwide is the best current solution.
References
- Sedensky, M., & Condon, B. (2020, November 19). Not Just COVID: Nursing Home Neglect Deaths Surge in Shadows. AP NEWS. https://apnews.com/article/nursing-homes-neglect-death-surge-3b74a2202140c5a6b5cf05cdf0ea4f32.
- Freud, E., Stajduhar, A., Rosenbaum, R. S., Avidan, G., & Ganel, T. (2020). The COVID-19 pandemic masks the way people perceive faces. Sci Rep, 10(1), 22344. doi:10.1038/s41598-020-78986-9
- Korczyn, A. D. (2020). Dementia in the COVID-19 Period. J Alzheimers Dis, 75(4), 1071-1072. doi:10.3233/JAD-200609
- UsAgainstAlzheimer’s. (2020). UsAgainstAlzheimer’s Calls for Immediate COVID-19 Testing for All Nursing Home Staff and Residents: Urgent Action Required to Ensure Safety and Health of Older Adults, Including those with Alzheimer’s. Retrieved from https://www.usagainstalzheimers.org/press/usagainstalzheimers-calls-immediate-covid-19-testing-all-nursing-home-staff-and-residents
- Alonso-Lana, S., Marquie, M., Ruiz, A., & Boada, M. (2020). Cognitive and Neuropsychiatric Manifestations of COVID-19 and Effects on Elderly Individuals With Dementia. Front Aging Neurosci, 12, 588872. doi:10.3389/fnagi.2020.588872
- Simard, J., & Volicer, L. (2020, May 7). Loneliness and Isolation in Long-term Care and the COVID-19 Pandemic. Journal of the American Medical Directors Association. https://www.jamda.com/article/S1525-8610(20)30373-X/fulltext
- O’Caoimh, R., O’Donovan, M. R., Monahan, M. P., Dalton O’Connor, C., Buckley, C., Kilty, C., Fitzgerald, S., Hartigan, I., & Cornally, N. (2020, October 26). Psychosocial impact of covid-19 nursing home restrictions on visitors of residents with cognitive impairment: A cross-sectional study as part of the engaging remotely in care (ERiC) project. Frontiers in Psychiatry. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7649131/.
- Gil, R., & Arroyo-Anllo, E. M. (2021). Alzheimer’s Disease and Face Masks in Times of COVID-19. J Alzheimers Dis, 79(1), 9-14. doi:10.3233/JAD-201233
- White, E. M., Wetle, T. F., Reddy, A., & Baier, R. R. (2021). Front-line Nursing Home Staff Experiences During the COVID-19 Pandemic. J Am Med Dir Assoc, 22(1), 199-203. doi:10.1016/j.jamda.2020.11.022
- Bolt, S. R., van der Steen, J. T., Mujezinovic, I., Janssen, D. J. A., Schols, J., Zwakhalen, S. M. G., . . . Meijers, J. M. M. (2021). Practical nursing recommendations for palliative care for people with dementia living in long-term care facilities during the COVID-19 pandemic: A rapid scoping review. Int J Nurs Stud, 113, 103781. doi:10.1016/j.ijnurstu.2020.103781
- Graham, J. (2020). Navigating Aging: With Vaccine Delivery Imminent, Nursing Homes Must Make a Strong Pitch to Residents. KHN. Retrieved from https://khn.org/news/article/with-vaccine-delivery-imminent-nursing-homes-must-make-a-strong-pitch-to-residents/