Table 4.

Recommendations for nursing staff on providing palliative care for people with dementia in long-term care facilities in times of COVID-19.

Advance care planning
•Nursing staff should collaborate with geriatricians and family doctors to review (existing) advance care plans of people with dementia. In particular, discuss and evaluate appropriate actions together to anticipate potential COVID-19 (for instance, whether or not life-sustaining treatments and hospital admission are desired).1,7,21 •Note that, ideally, advance care planning starts before a diagnosis of COVID-19 and before the person with dementia loses cognitive capacity.1,3,17,19 Nursing staff may provide information and guidance to people with dementia and their families to facilitate the discussions of wishes and care preferences.2,3,9,12,19,22 Consider using decision aids as a practical tool to support (proxies in) making difficult decisions.19 •Aim to facilitate timely advance care planning conversations by thoughtfully introducing the COVID-19 subject.15 Nurses could explain that in the context of COVID-19, it is advisable to discuss potential (realistic) scenarios and end-of-life care options proactively to avoid undesirable treatment (such as unwanted hospital admission, life-sustaining treatments or hospitalization).2,3,16,19,22 •Be aware that, in case advance care planning conversations did not take place before, initiating first conversations in times of COVID-19 may be colored by fears or emotions induced by the current pandemic.22 Without in-depth reflection or repeated discussions, certain decisions may be particularly difficult to make. •Consider using advance care planning conversations to identify anticipatory grief and to provide information on bereavement preparation in times of COVID-19.14,16,19 •For optimal support concerning advance care planning, a follow-up conversation or call is recommended to respond to psychosocial or spiritual needs or questions that may arise from discussing care plans.16 •Make sure to document wishes clearly in transferable (digital) files that should be available and accessible at all times for different care agencies and care personnel (such as emergency physicians) in acute situations.2,3 •During this pandemic, nursing staff may discuss the preferred place of death with persons with dementia, before potential infection. Keep in mind that a familiar environment is likely preferred over a hospital.3,12,19 Additional recommendations for people with dementia who have COVID-19 •Complex decisions about hospitalization related to COVID-19 should be discussed jointly within the interprofessional care team (including nurses, family doctors or elderly care physicians, paramedics, palliative care specialists).2,7 •For people with dementia who have COVID-19, discuss goals of care with the patient and within the interprofessional care team as soon as possible and revise care goals as the situation changes (involve the person's family or surrogate decision-maker).21 •Be sensitive to family members and proxy decision-makers, who may have to make hasty, difficult and emotive decisions on behalf of their relative.19

Physical aspects of care
•Try to stimulate people with dementia to stay active by encouraging movement and (small, at-home) exercises (walking around the room, ward, or outside if possible, changing position (sitting, standing or lying down) regularly).1,11 • Provide additional support and explanation to residents with dementia, to help them to maintain proper hand hygiene.20 Consider the following tips: - Place dementia friendly instruction boards or signs in bathrooms or elsewhere as a reminder to wash one's hands with soap for 20 seconds. - Demonstrate how to execute thorough hand washing. - Use hand sanitizer or anti-bacterial hand wipes as an alternative for people with dementia who cannot easily get to a sink to wash their hands. - Encourage people with dementia to sneeze and cough into a tissue (and discard afterwards) or into their elbow instead of their hands. - Remind them about social and physical distancing and encourage them to stay in their room, for instance by tempting them with indoor hobbies (of their own, or something new that they find interesting). •Note that other health issues might mask manifestations of COVID-19 in people with dementia or infection may appear asymptomatically (reported symptoms include sudden cough and fever, presence of diminished taste or smell, nausea and diarrhoea, shortness of breath, falls, dehydration, delirium or confusion, disordered sleep).23 •Careful identification, documentation and discussion of changes in health status, mood or behavior as potential indicators for infection is advisable,23 taking into account that people with dementia may not self-report such changes.4,11 Additional recommendations for people with dementia who have COVID-19 •Pay attention to oral hygiene; this is particularly important for those who contract COVID-19, which may cause a dry mouth.3 •Nursing staff may advocate for person-centered procedures to isolate people with dementia who have COVID-19 (especially with behavioral disturbances), that do not involve physical or medical (antipsychotics, sedatives) restraining measures.7,11 (see ‘Psychological care’). Instead of isolation on one's own room, consider arranging COVID-19 cohort units, allowing for freedom of movement.

Psychological aspects of care

•Be mindful that regulations of social isolation and distancing followed by experienced loss of social connections and the sight of personal protective equipment on staff may instigate feelings of anxiety, depression, grief and trauma in people with dementia.1,15,22 • Try to reduce heightened anxiety about COVID-19 among people with dementia.1,11,20 Consider the following tips: - Minimize access and exposure to media information. - Provide information and explanation to persons with dementia if they express concerns. - Use simple reminders and visual instructions to explain the current situation. - Use reassuring language and gestures to help people with dementia to follow safety regulations. - Interact with persons with dementia frequently, ask how they are doing and take time to listen. Validate the person's feelings and provide reassurance. - Avoid using negative language (words such as ‘crisis’, ‘pandemic’, ‘lockdown’ or ‘isolation’) and do not argue with colleagues about COVID-19 regulations in front of persons with dementia. •Spend sufficient time with persons with dementia and encourage them to engage in everyday activities and routines to reduce boredom and confusion.20 •Report and respond to behaviors that may pose a risk to persons themselves or others (such as ignoring or resisting safety instructions).20 • Look for psychosocial interventions to manage such behaviors.7,11 Consider the following tips11,18: - Use old photographs, objects or songs from the past for distraction. - Stimulate movement, exercise and (creative or household) activities (such as painting, cooking, folding towels). - Keep a regular schedule and routine. - Be mindful about the effect of social isolation on people with dementia and that it may worsen symptoms of dementia. Take time to talk to them regularly and thoughtfully explain the situation, taking into account cognitive difficulties, and try not to submit your own anxiety.11 - Reach out for family members who may (video)call to reduce distress and confusion in their relative with dementia through interaction.18 •Nursing staff should collaborate with mental health professionals and social workers to deliver adequate mental health care.8 Additional recommendations for people with dementia who have COVID-19 •Report and respond to behaviors that may pose a risk to others (such as wandering behavior during isolation).20 •Nursing staff should collaborate with mental health and dementia teams to manage wandering behavior of residents who need to be isolated due to infection.7 •Pay attention to anticipatory grief work by preparing persons with dementia and their families in case of a nearing death due to COVID-19. Communicate and address anticipatory grief by recognizing and validating emotions. Preferably, use a direct approach and do not avoid or shy away from talking about emotions and grief.14,19 •Consider providing (written) information about bereavement preparation in relation to COVID-19 to people with dementia and their families.16

Social aspects of care
•Be mindful of the potential adverse effects of isolation from others and the outside world for people with dementia (for instance, loneliness, anxiety, depression and worsening symptoms of dementia).13 •Although COVID-19 patients should be isolated, infection control regulations affect all people living with dementia, in terms of social isolation. When a person is nearing the end of life or when there is an acute need for companionship, staff should weigh the importance of a visit against infection risk.1,17,21 • Reduce social isolation and loneliness.11,20 Consider the following tips: - Encourage families and friends to drop off letters, drawings or other packages. - Encourage participation in everyday activities (such as listening to music or audiobooks). - Encourage (individual, at a distance) singing, walking outside, doing exercises. - Maintain social support by arranging regular check-ins by family members. - Maintain (small) group activities when possible; play interactive games via overhead speakers, eat in turns at mealtimes.1 - Encourage the use of technology, such as tablets or smartphones to facilitate online social engagement (with relatives). Note that the use of technology may require additional explanation and support, and may not be suitable for everyone.15,19 •Invest in creative solutions and alternatives for the restricted visiting.1,22 Consider using advanced technology such as Virtual Reality to offer people with dementia in isolation the opportunity to meet with their family in a simulated, trusted place or to visit special environments (such as music concerts, nature expeditions).13,17 •Virtual networks can also be used as platforms for joint activities and as a virtual visiting lounge for social contacts.6 •Nursing staff may advocate for offering family caregivers the opportunity to move in during the COVID-19 period.6

Spiritual aspects of care
•During advance care planning conversations, it is advisable to pay attention to personal values, desired ritual or spiritual practices surrounding the end of life (which may also include funeral or memorial plans) to enable chosing a suitable course of action.14,19 •Connect people with dementia and their families to resources that may support them in their spiritual needs or needs surrounding postdeath planning and that may provide additional (grief) support using telehealth services.1,14 •Consider calling in a chaplain or spiritual caregiver to support people with dementia at the end of life and their families during the dying process.5 Spiritual support is particularly essential in the complex times of COVID-19, regardless of whether the person with dementia is dying from COVID-19.
Additional recommendations for people with dementia who have COVID-19 •Be mindful of the burden of decision-making for people with dementia who contract COVID-19 themselves, their families and their formal caregivers. Feelings of abandonment and moral distress may arise, which may cause complicated grief in families and burnout in nursing staff.2

Care of the dying
• It is important that nursing staff can identify when a person's death is imminent.1,17 Three or more of the following symptoms likely indicate a terminal phase in persons with COVID-19: - Experiencing rapid day to day and irreversible deterioration - Completely bedbound, requiring frequent interventions - Becoming less conscious, with lapses into unconsciousness, diminished or absent response to voices - Unable to swallow - Diminished or no urine secretion - An acute event happened that required revision of care goals - Profound weakness - Changing breathing pattern - Gurgling or rattly breathing - Changing body temperature (hot and clammy, or cold) - Pale or mottled skin •If a person with dementia approaches the end of life, nursing staff may advocate for offering families the opportunity to say goodbye in person, despite potential visiting bans due to COVID-19.3,21 In the terminal phase, talk to the person and his or her family and address the person's comfort.1 •If family members are unable to visit in-person, use technology to enable a connection between the dying person and his or her family.5 •Involve families as much as possible if a person with dementia is nearing the end of life (regardless of whether they have COVID-19), also if they cannot be present in-person. Provide information every step of the way and ask for ideas on how to arrange a peaceful death, tailored to the dying person.5 • In times of COVID-19, be mindful of rituals that may enable persons with dementia and their families to say goodbye properly (either in person or at a distance).5 Nursing staff can contribute to a peaceful death, even in complex times. Consider the following tips: - Rituals for saying goodbye at the end of life should be tailored to the individual to be meaningful. Try to align with the specific life view or religion of the dying person. - You may speak to the dying person, even if they have advanced cognitive impairments and are unaware of the situation. For instance, explain to the person that the moment has come to say goodbye, while trying to maintain a sense of calm and peace. - Consider lighting a candle, investing in a moment of silence. - You may speak to the dying person about their family members and others with whom the person had a connection. For instance, ask the dying person to think of or imagine these others. You may ask the dying person what he or she wants to say to them. If a person cannot speak, consider sharing your own thought and feelings. By doing this, you may foster feelings of connectedness, even when family is not present. - If family members are present, either in-person or via a video call, you may stimulate a joint feeling of connectedness (for instance, by reading a poem, being silent together, saying prayers together, singing or humming, listening to music).

Bereavement care
•After the death of a person with dementia, inform family members (if they were not present at the moment of death) about the dying process and rituals that were used to foster a peaceful goodbye.5 Tell them about any meaningful last words or gestures of their relative. This may enable them to grief their loss in a healthy way. •Consider sharing a dignified photograph of the person with dementia after death with the bereaved family (with their permission). As families may not be present at the time of death, this might be the only visual evidence of the person's death and it may enable emotional relief.16 •Nursing staff may advocate for accessing and sharing tools and resources that are needed to mitigate (complicated) grief of families, and to help nursing staff cope with their own grief. For instance, think of communication tools, telehealth services, and nursing staff self-care.14 •Be mindful that families bereaved of someone with dementia in times of (and sometimes due to) COVID-19, may feel a range of negative emotions such as abandonment, anger, isolation and loneliness. Families who have not been able to spend time with their relative before death or those who felt unprepared for the loss may have difficulties to come to terms with their loss.10,14,19 •Be aware that complicated grief may follow from adverse experiences surrounding the loss. In times of COVID-19, adverse experiences are likely to arise due to the sudden and rapid nature of the infection.10,19 •Complicated grief involves recurring intrusive thoughts about the loss, preoccupation with sorrow, ruminating behavior, excessive bitterness, alienation of social contacts, difficulties accepting the loss and losing perceived purpose in life.14 Pay attention to families’ signs of grief and point out that they should seek information or contact their family doctor if they are concerned about their coping with the loss.10 •However, note that not every bereaved family member during the COVID-19 pandemic will experience complicated grief.14 Nursing staff should explain to families that grieving is normal and that it generally takes time. • Tell bereaved family members to look after themselves by considering the following tips10: - Think of the basics: eat well, stay hydrated, exercise regularly, try to maintain your usual routine. - Stay connected (digitally) and talk to others about how you are doing. - Allow yourself to experience negative emotions: it takes time to come to terms with a loss and the grieving process may fluctuate over time.

Ethical aspects of care
•Be aware that in the context of COVID-19, decision-making can be particularly challenging, which may induce moral distress. Moral distress arises when internal or external constraints prevent us from doing what we think is morally right.14 Moral and emotional distress may lead to burnout and unresolved grief in professional caregivers and families.14,19 •Nurses are often trained to place the patients’ well-being above their own feelings. However, self-awareness in care staff and dealing with one's own emotions and thoughts during care provision in times of the COVID-19 pandemic is imperative to the provision of care that meets ethical standards for persons with demetia and their families.14 • To deal with stress and loss during the COVID-19 pandemic, consider the following tips for self-care14: - Disconnect from the disaster event by allowing yourself to take breaks (and deep breaths) occasionally. - Facilitate your own role during COVID-19 by making sure you feel prepared and informed. - Make sure you know local resources and services to which you may refer for additional support. - Join or arrange peer support and ask for adequate supervision to facilitate your decisions and responses.

Structure and processes of care
•The health condition may deteriorate quickly in COVID-19 patients and people with and without COVID-19 may have unmet palliative care needs as professionals may be unable to prescribe in times of limited resources. It is advisable to consider anticipatory prescription: arrange and document prescriptions in advance. Nursing staff may advocate for collaboration with family doctors and local pharmacists to ensure timely availability of required palliative medication and equipment and to keep anticipatory stocks.3,7 •Note that residents with symptoms of COVID-19 must be isolated in a separate room or on a COVID-19 cohort unit immediately.22 Nursing staff may advocate for the implementation of strict infection prevention measures in their organization (such as wearing personal protective equipment including masks, goggles, a gown and gloves).1,4,15 •It is advisable for nursing staff who have been in contact with infected persons to be tested if they experience symptoms and to self-quarantine in case they test positive.4 •To reduce the chances of viral outspread, it is advisable that nursing staff do not work in multiple facilities and restrict movement between facilities.1 •Nursing staff may collaborate with specialized (mobile) palliative care teams, if available, to provide the necessary support and care for persons with dementia.3 Consider consulting a palliative care physician or geriatrician via phone or telehealth to assist the identification of the terminal phase.1 •Nursing staff may advocate for or contribute personally to the tailoring of information materials (such as guidelines and information sheets) developed for the general population to those who have cognitive and behavioral impairments.12 •During this pandemic, it is important to have supportive and visible nursing leadership in long-term care.1 Nurses should advocate for their role as leaders and supervisors to optimize the quality of care, to increase adherence to prevention and control measures and to support their peers. •Nursing staff should address their needs with regard to specific information about risks and guidelines on protective measures when providing palliative and end-of-life care under COVID-19.9 •Nursing staff may advocate for setting up a 24-h palliative care hotline, to give advice and answers to people with dementia and their families.21

*Referencing numbers correspond with the overview of included documents in Table 3.