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Riv It Cure Palliative 2020;22(3):129-139

Palliative care and impact of the COVID-19 pandemic
on nursing home residents with dementia


1 Leiden University Medical Center (LUMC), Department of Public Health and Primary Care, Leiden, The Netherlands; 2 Radboud university medical center, Department of Primary and Community Care, Nijmegen, The Netherlands; 3 Marente, Leiden, the Netherlands

Received and accepted July 15, 2020.

Summary. COVID-19 and infection control measures have impacted greatly on nursing homes, with particular concerns about residents with dementia and at the end of life. We examined how three important issues in palliative care in dementia – advance care planning, connecting with family, and challenging behaviour – are affected by the pandemic. We drew on the literature, particularly a systematic review on palliative care in dementia in relation to COVID-19 which identified advance care planning as the most prominent theme. Advance decisions about hospitalization are preferably made with all involved in advance of a pandemic, and to avoid misconceptions, healthcare professionals should explain what palliative care can offer in the nursing home. Additionally, we analysed data on family visits and agitation from a longitudinal study on nursing home residents with dementia in the Netherlands. A first assessment was conducted just before a national visitor lockdown of nursing homes March 20th, 2020. We separately analysed changes with a second assessment during the lockdown period through June 14th (n=44 residents) or outside this period (n=17). We found less agitation during lockdown, while unchanged when assessed outside the lockdown period. Physicians reported COVID-19 impacted on treatment and care of 57% of residents due to limited family visits, less opportunity to go around, staff availability and activities offered, and decreased quality of care. However, impact was highly individual with also cases with no or positive impact, staff having more time for individual support. The findings may inspire further research on how to better individualize palliative dementia care.

Key words. SARS-CoV-2, dementia, nursing homes, end of life, advance care planning.

Cure palliative e impatto della pandemia COVID-19 sui residenti nelle case di cura con demenza.

Riassunto. COVID-19 e le misure di controllo delle infezioni hanno avuto un grande impatto sulle case di cura, con particolare preoccupazione per i residenti con demenza e alla fine della vita. Abbiamo esaminato come tre importanti questioni delle cure palliative nella demenza – pianificazione dell’assistenza avanzata, collegamento con la famiglia e comportamenti difficili – siano influenzate dalla pandemia. Abbiamo attinto alla letteratura, in particolare una revisione sistematica delle cure palliative nella demenza in relazione a COVID-19 che ha identificato la pianificazione delle cure anticipate come il tema più importante. Le decisioni anticipate sull’ospedalizzazione vengono preferibilmente prese con tutti i soggetti coinvolti in anticipo rispetto a una pandemia e, per evitare equivoci, gli operatori sanitari dovrebbero spiegare cosa possono offrire le cure palliative nella casa di cura. Inoltre, abbiamo analizzato i dati relativi alle visite e all’agitazione della famiglia da uno studio longitudinale su residenti in case di cura con demenza nei Paesi Bassi. Una prima valutazione è stata condotta appena prima che venisse introdotto, il 20 marzo 2020, il divieto nazionale delle visite alle case di cura. Abbiamo analizzato separatamente le modifiche con una seconda valutazione durante il periodo di blocco fino al 14 giugno (n = 44 residenti) o al di fuori di questo periodo (n = 17). Abbiamo trovato meno agitazione durante il blocco, mentre è rimasto invariato quando valutato al di fuori del periodo di blocco. I medici hanno riferito che COVID-19 ha avuto un impatto sulle cure e sull’assistenza del 57% dei residenti a causa di visite familiari limitate, minori opportunità di spostarsi, disponibilità del personale e attività offerte e riduzione della qualità delle cure. Tuttavia, l’impatto è stato altamente individuale con anche casi senza impatto o impatto positivo, con personale che ha più tempo per il supporto individuale. I risultati potrebbero ispirare ulteriori ricerche su come individuare meglio le cure per la demenza palliativa.

Parole chiave. SARS-CoV-2, demenza, case di cura, fine vita, piano di cura avanzato.


Warned by a collaborator from Northern Italy that COVID-19 could cause up to a devastating 80% mortality of residents in some nursing homes in March 2020, in the months afterwards, nursing homes in Northern Europe and the US also experienced multiple outbreaks. In many countries, almost half of deaths from COVID-19 occur in nursing homes (24% to 82%; lower in some Asian countries)1-3. Nursing home residents’ condition is typically frail and many are older people but this does not fully explain excess mortality. The way care is organized plays a role, often focused on living, in a partly social and partly medical model, with important related societal issues such as a poor public image of nursing home care and low-wage staff3. However, the extent to which nursing homes have been affected is amazingly diverse; from numerous reports on crisis situations with many acutely ill residents, high mortality, and sick staff adding to panic, to no infections and nursing homes with many infections virtually going unnoticed4.

COVID-19 measures to limit spread of the disease in nursing homes (e.g.5,6) differentially affect nursing home residents with dementia. For example, because they may not understand isolation measures or alternative communication via video calls to connect with loved ones, or because they need touch as a language they can understand.7 Figures from western countries report that about half of nursing home residents and around 60-80% of decedents have dementia8-10. In this contribution, we address how the COVID-19 ­pandemic affects important palliative care needs in nursing home residents with dementia and their loved ones.

First, we outline the general concept of palliative care in dementia, a progressive incurable condition with people either dying with or from the dementia. Box 1 indicates we should not wait until the advanced stage – because it may never arrive – to address various and changing needs that arise along a dementia disease trajectory, but adopt a person-centred multidisciplinary palliative approach earlier27. The newly proposed needs-based palliative care definition that still explicitly includes end of life28 fits well with dementia. However, there are clearly special issues in the care of nursing home residents with dementia. Dementia involves considerable uncertainty29. In addition to difficulty predicting the disease trajectory (box 1) and conceptualising palliative care, in view of progressive cognitive impairment, advance care planning and care for family members’ changing roles and concerns does require special attention27,30. Further, as with palliative care, person-centred care31 and quality of life are core in dementia care. However, to maintain functioning and improve comfort (figure 1), assessing and managing pain and challenging behaviour as related to quality of life34, requires special skill. Such skill may not typically be available among professional caregivers specialized in palliative care, and integration with skill of dementia specialists is helpful, e.g. through collaborations27,35. Importantly, persons with dementia desire relationships and identity maintained at the end of life, but this also requires increased effort on the part of family and professional caregivers36.

Many studies have shown that persons with dementia are at risk for overtreatment, undertreatment or suboptimal treatment, and in this respect, COVID-19 puts them at risk for significant harm7. COVID-19 and the measures taken to control the pandemic influence a number of issues that are specific to palliative care in dementia, especially persons living in nursing homes and their families. In this contribution, we focus on goals of care in the context of advance care planning, family visits, and challenging behaviour.


In our systematic review on palliative care in dementia related to the pandemic, we identified recommendations for nursing care from research and policy documents37. Even at 14 July 2020, the most intuitive all-text word search in PubMed (“dementia and (palliative or end of life) and (COVID-19 or SARS-CoV-2)”) resulted in only one hit, an editorial on use of technology in end-of-life planning38. Therefore, we searched publications about long-term or nursing home care for content about palliative or end-of-life care or dementia. The two most prominent themes in the literature up to May 18 were advance care planning and psychosocial aspects of care. We summarize the literature on advance care planning, adding more recent publications.

We address family visits during nursing home visitor lockdown and changes in agitation as an important challenging behaviour in dementia, and even key driver of costs in advanced dementia39. We analysed data from an ongoing, multiple-cohorts longitudinal data collection in nursing homes in the Netherlands. No family visits were allowed except for in the terminal phase. There was no exception for dementia such as in the UK, but residents were allowed to go outside their room5,6. During outbreaks, zoning into COVID-19 positive and negative areas was implemented6,40.

Resident-level data are collected in the context of mandatory evidence-based medicine (EBM) courses41 that are part of a 3-year residency internship of the elderly care physician training program42 at Leiden University Medical Center (LUMC). Physicians in training contribute to a fixed large data collection, since 2018, on pain and discomfort in nursing home residents with cognitive impairment. For this EBM training study, they attend classes on how to collect the data, enter in an online Castor EDC module, develop a proper research question, analyse the data, and report and present the results. Data are collected mostly on psychogeriatric units which are closed departments with 24/7 oversight for, almost exclusively, persons with a physician ­diagnosis of dementia who typically stay for the rest of their life (different from Dementia Special Care Units – DSCU – in the US designed for those with no severe dementia to improve functioning with behavioural problems or wandering3,43). The dataset expands as the physicians each collect data on 5 nursing home residents they care for in homes mostly in the west and south of the country. Two the same assessments about 2 months apart allow for assessing changes over time.

The Medical Ethics Review Committee of the LUMC (now called METC-LDD) reviewed the protocol (no P18.100, 24 September 2018) and judged the study to be exempt from the Medical Research Involving Human Subjects Act (WMO) and therefore the Board of directors of LUMC declared they had no objection to perform the research.

Fifteen physician trainees scheduled to conduct the first assessment around January 2020 each enrolled 5 residents (88%; 75 of sample of 85 at alphabetical order of names, 1 not asked because asked for other study, 3 family unreached; remaining 81 asked–mostly family–informed consent: 2 late responses, 2 refused, and 2 no response). Two of 75 had cognitive impairment but no dementia and were excluded from the analysis. Of 73 residents with dementia, 12 (16%) died before the second assessment (figure 2). The physicians managed to complete the second assessment for 21 residents between 28 February and 17 April 2020. March 20, a national lockdown of nursing homes was implemented, with no access to family, and sometimes restricted access for physicians for direct observation for research purposes. Therefore, in April, we modified the program to offer a substantially reduced second assessment dropping direct observation of pain and discomfort. We kept agitation frequency12 anticipating this might increase during lockdown, while adding a few COVID-19-related items. This assessment was completed for the other 40 residents between 30 April and 30 June 2020 (figure 2).

In the analyses, we made use of natural changes and different timing that occurred as in a quasi-­experimental design. We distinguished between second assessments during and outside the lock-down period, while 5 of these second assessments were before the nursing home lockdown and 12 at or after the national reopening at June 15 (with locally-paced reopening stepwise between May 25 and June 15, mandated between June 15 and 30 if the home and staff had been COVID-19 free). This resulted in 44 paired assessments during the lock-down period available for analysis, of which 16 full and 28 reduced assessments. We present descriptive statistics for the first assessment (with SPSS version 25, IBM, 2017). We did not compare the first assessment between the two groups with differently timed second assessments as differences were not expected, but we compared resident-level change data separately for second assessments during and outside the lockdown period. Differences in agitation frequency were tested with the non-parametric paired Wilcoxon test.


Literature on advance care planning
in dementia, particularly in COVID-19 times

COVID-19 may involve rapid deterioration with acute onset of respiratory distress even after a relatively benign onset of the illness44,45. Advance care planning is relevant as it avoids decisions made in crisis; it can reduce decisional uncertainty and decision regret27,30,46,47. It has social elements48 as healthcare professionals may prepare resident and family emotionally for future decisions anticipating changes in condition. With dementia, “advance” is not just in advance of loss of capacity, or death, as assumed in generic definitions of advance care planning49. It is better conceived as a continuous process of multiple conversations while prioritization of care goals may change over time (figure 1)27. However, the literature is replete with barriers to initiate it in dementia; just one example: difficulty projecting a future. In Dutch practice, advance care planning is often initiated only upon nursing home admission when elderly care physicians typically prioritize care goals and decide with family – and the resident if still able – about hospitalization and resuscitation (CPR)32,33,45. Care goals typically change shortly before death to comfort if comfort had not been prioritized already upon admission (figure 1).

The relevance of advance decisions about hospitalization and CPR, also in dementia has become more obvious through COVID-19 and coverage in the news5,45,50. The literature recommends discussing realistic scenarios. This should include discussions about how COVID-19 may cause residents to become critically unwell, risks and benefits of hospitalization and what they and their families would wish if their health deteriorates. Advance care planning is helpful for preference-sensitive decisions, but in the case of COVID-19, informed assent with no choice in regards CPR or hospital or ICU admission makes sense in case of multimorbidity and a poor prognosis45,48. It is not so much that the dementia itself predicts adverse hospitalization outcomes, which depends on frailty as for anyone else51. Rather, there are well-documented elevated risks including confusion, delirium and distress. For example, earlier ethnographic fieldwork found the environment distressing, with hospital nursing staff feeling unskilled to provide psychosocial care for the person with dementia and the caring as not prestigious52.

In crisis situations, however, informed assent to not hospitalize may be (mis)conceived to serve to decrease infection risk for healthcare professionals or to triage and allocate hospital beds based on survival prediction48. Initiated only during a pandemic for all, it may impress as unjust withholding of care40. Conversations only at the time of COVID-19 may be more difficult because it mixes shared decision making with disclosures of bad news48. Also, face-to-face family involvement in decision making is often preferable but may need to be preplaced by supportive technology38.

Ideally, healthcare professionals can fall back upon pre-pandemic conversations and use digital communication to just reconfirm or adjust decisions. In any case, conversations can be enhanced greatly when healthcare professionals explain exactly what can be offered in terms of palliative care (box 2, “intensive individualized comfort care”50). This may help build relationships of trust48. Nurses can introduce the subject37, if available, supported by information brochures about palliative care53 while multidisciplinary advance decision making is preferred5.

Nursing home residents with dementia
in COVID-19 times: family visiting,
agitation and different impact

Table 1 describes the participating nursing homes with typically, over 100 beds of which over half dementia (psychogeriatric) care beds, the relatively young physicians in training and the nursing home residents they cared for. The mean time in-between the first assessment around January 2020 with no COVID-19 in the country, and second assessment of the 61 included residents was 3.6 months (figure 2). Of the older, predominantly female nursing home population, only a minority had advanced dementia; over half could still walk or eat independently. Almost 80% answered when asked about pain in the last week, and almost half who answered, self-reported pain.

At any assessment (mostly by the physician her-or himself), slightly over one-third to two-thirds were agitated (total at first assessment, 59%, 36/61; table 2) with frequency ranging between rarely to almost daily. Agitation was included in the care and treatment plan for about one-third of residents. Figure 3a shows that when assessed during the lockdown period (n=44) most residents had unchanged or somewhat lower agitation frequency than before, with overall a significant decrease (p=0.025). Agitation frequency for those assessed outside the lockdown period (n=17; figure 3b) was mostly unchanged (p=0.68).

Table 3 shows that at the lockdown period assessment, one-third (10/28) had some intercurrent disease. Three had COVID-19 at the assessment and 2 had had it before. All family was confronted with visiting limitation measures, with two-thirds (68%) of residents not receiving visitors at all. In most cases (16/28, 57%), the physician felt that the situation impacted on treatment and care of the resident. The physicians reported fewer family visits and freedom restrictions in addition to fewer staff visits to impact treatment and care; occasionally, approaching the end of life, with detrimental consequences (table 4). However, in some cases, physicians felt it had no impact, or a positive impact, for example when staff could spend more time to connect with the resident. Quality of care and activities offered were mentioned as having decreased, but in some cases, these also improved. In a few cases, the physician felt there was no impact because the resident was not aware of any changes.


Advance care planning in dementia was a hot topic in research before the COVID-19 pandemic, and remained an important topic in the literature covering aspects of palliative care in dementia in COVID-19 times. Media reports have contributed to awareness about the need to consider preferences for hospitalization in advance. It has also led to concerns about unrightful rationing of care for frail persons including those with dementia. Explaining what palliative care can do and providing it, is paramount.

In the Netherlands, during and around visitor lockdown of almost 3 months, physicians collected follow-up data about 61 residents and they reported impact on treatment and care for more than half of the residents. Many missed connecting with family and activities with family or staff, and quality of care decreased in some cases. However, there were also accounts of no or little impact, and even positive impact such as staff spending more time with residents. Initial agitation frequency was similar as in an earlier prospective study (57-71%, often persistent12), but contrary to our expectations, we found a decrease in agitation during COVID-19 lockdown, compared with no change outside the lockdown period.

Other research on changes of challenging behaviour in nursing home residents in the Netherlands so far is limited to surveying nursing staff about changes in residents’ behaviour more generally or family54,55. Decreases were nearly as frequent as increases54, and concerns about impact more generally were greater for those without dementia55. There are very few resident-level professional reports and our longitudinal EBM training study with clear denominators provided a unique opportunity to obtain prospective data directly from physicians with probably no interest in overreporting, and they had known the residents for at least several months around the time of lockdown. In an Italian study, over half of family caregivers of community-dwelling persons with dementia reported increased neuro­psychiatric symptoms, and only for a few percent, it decreased56. The situation in the community may be quite different, with distressed family around, or perhaps lower pre-lockdown agitation. For persons with dementia, a balance between sensory-stimulating and sensory-calming activity is important57. For some, the balance during nursing home lock-down may have improved, as we personally experienced a more peaceful atmosphere in the nursing home in the absence of a continuously ringing doorbell. However, missing family was reported and increased loneliness and sadness has been reported around the world2 and may relate to a lack of physical closeness7.

Unfortunately, we did not assess change in wellbeing or apathy or advance care planning. Also, we did not assess family perspectives regarding visiting and impact, while media report on enormous frustrations and even envying or blaming risk-taking nursing staff who are allowed to touch their loved ones. Further, the literature we found on COVID-19 in relation to palliative care including advance care planning in dementia may be immature and mostly opinion-based at this point, with little empirical data.

We found that the literature also reports positive aspects regarding advance care planning. The COVID-19 situation has been called an opportunity to discuss more openly and “increase death literacy in the population, hopefully culminating in more authentic advance care planning in the future”45. It has been suggested that nursing homes include social and spiritual (meaning) aspects in advance care planning37. Living and dying well in a nursing home obviously requires good medical and social care, with opportunities for palliative care. Physicians on site such as in the Netherlands42 and on site or on call in Lombardy17 offer great advantages in terms of opportunity to advance care planning, and hospitalization rates were only a few percent before the pandemic11,17. The option to provide medical care in the nursing home including subcutaneous fluids and oxygen may obviate the need for hospital admission40. From the current data, with half reporting pain, consistent with previous studies, however, effect of in-house medical care on self-reported pain levels, if any, is somewhat disappointing, and also physician-reported agitation was not always part of care planning.


COVID-19 outbreaks have caused crises in nursing homes and impacted care of persons with dementia, their family and staff. However, our resident-level data suggest impact of COVID-19 on agitation and more generally to be highly individual, resembling highly variable courses of the dementia and after acute illness also in the absence of a pandemic. Cases of positive impact perhaps resulting from more balanced sensory input need further study, as an opportunity to learn how to better individualize (palliative) dementia care. The general public being more familiar with advance decisions about medical care is also fertile soil to further implement advance care planning in dementia, a proactive approach fully consistent with the adage of palliative care.

Conflict of interests: the authors have no conflict of interests to declare.


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