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• To recognise the effects that the coronavirus disease 2019 (COVID-19) pandemic has had on the care of people with dementia
• To understand the importance of dementia awareness and education for nurses
• To consider how nurses can promote person-centred dementia care in their practice
In recent years, nurses have experienced increased workplace pressures in part due to the coronavirus disease 2019 (COVID-19) pandemic, which exacerbated challenges in the delivery of person-centred dementia care. This article examines how people with dementia were affected by the COVID-19 pandemic, as well as exploring the ongoing effects on nurses and the care they provide for people with dementia. The author discusses the importance of dementia awareness and education for nurses that supports them to promote the needs of people with the condition. The article also outlines how nurse leaders can promote person-centred care for people with dementia through reflection and clinical supervision.
Nursing Standard. doi: 10.7748/ns.2022.e11876Peer review
This article has been subject to external double-blind peer review and checked for plagiarism using automated software
Waters CJ (2022) Supporting person-centred dementia care following the COVID-19 pandemic. Nursing Standard. doi: 10.7748/ns.2022.e11876
Published online: 01 November 2022
In the UK, the coronavirus disease 2019 (COVID-19) pandemic resulted in the suspension of non-urgent care, with services for people with dementia disproportionally affected due to the long-term nature of the condition (Brown et al 2020). At the same time, NHS staffing shortages, pandemic self-isolation precautions that affected family members and carers of people with dementia, and the cancellation of routine clinical check-ups, resulted in the further interruption of dementia services.
The pandemic also delayed the implementation of the Dementia Action Plan for Wales (Welsh Government 2018), which had been intended to aid the early identification and diagnosis of people with dementia and enable them to live as well as possible in their communities (Canevelli et al 2020). Killen et al (2020) stated that COVID-19 social isolation measures had not only resulted in the under-treatment of existing symptoms in people with dementia, but also had exacerbated the condition due to the lack of cognitive stimulation and exercise. Isolation is associated with suboptimal well-being outcomes, and people with dementia who were receiving social support services before the pandemic experienced higher levels of anxiety and lower mental well-being once those services began to close down (Giebel et al 2020).
It is important for healthcare organisations and nurse leaders to learn from the experience of the COVID-19 pandemic and to ensure that nurses fully understand the needs of people with dementia in all settings, including hospitals, care homes and the community (National Dementia Action Alliance 2020).
• The provision of non-urgent care for people with dementia was disproportionally affected during the coronavirus disease 2019 (COVID-19) pandemic
• It is important for healthcare organisations and nurse leaders to learn from the experience of the COVID-19 pandemic and to ensure that nurses fully understand the needs of people with dementia
• Dementia care should focus on inclusive and person-centred approaches such as promoting independence and involving people with dementia in care planning, rather than on symptomatic deficits
• Dementia awareness and education for all healthcare staff is crucial to promote effective person-centred care and to achieve positive outcomes for people with dementia
When people with dementia are admitted to hospital or a care home, they may find it challenging to understand their surroundings, follow instructions and express their feelings. People with dementia may quickly forget short, infrequent visits from family members, which can result in feelings of abandonment. In addition, they may need enhanced supervision since they are at increased risk of delirium or adverse incidents such as falls. They may also require further input in terms of exercise to maintain their cognitive reserve (the reserve of cognitive ability that people develop during their lives, which protects them from cognitive decline through ageing and disease) and their pre-admission levels of activity (Age UK 2016, Kelley et al 2019, Jensen et al 2020, John’s Campaign 2022).
John’s Campaign is a movement aimed at assisting NHS staff in recognising the importance of working with family carers as equal partners in the care and support of people with dementia, and to gain improved access to hospital visiting for family carers (Age UK 2016, John’s Campaign 2022). The campaign was named after John Gerrard, a man with Alzheimer’s disease who was admitted to hospital with a minor infection in 2014, where an outbreak of norovirus subsequently prevented him from receiving visitors. Having been able to function at a high level before his admission, he was discharged after four weeks having become malnourished, immobile, incontinent and inarticulate. The campaign promotes open hospital visiting for people with dementia, because those who function in the community may find themselves alone and in a state of confusion and anxiety when admitted to hospital, which can ultimately affect their recovery (John’s Campaign 2022).
People with dementia should be supported to stay involved in activities that promote their health and well-being. Family carers are optimally placed to support this since they have a unique insight into the individual, can communicate in a way that is familiar to the person with dementia and ensure continuity (John’s Campaign 2022). The presence of personal objects, life-story work (a record of the person’s life such as diaries, photographs and letters) and reminiscence activities can also support effective communication and enhance the patient experience (Insua-Summerhays et al 2018, Cook et al 2020). When a person with dementia is in hospital, their family members and carers should be involved in care planning, and the person should be offered activities they might once have enjoyed at home such as board games, quizzes and crosswords, and which can support their feelings of self-worth (Welsh Government 2018).
In the author’s experience, following the COVID-19 pandemic people with dementia continue to experience significant challenges, with visiting restrictions still in place in some care facilities, alongside shorter visiting hours and booking required for visits. Evidence has indicated that restrictions on family visits in care homes during the COVID-19 pandemic negatively affected residents’ nutritional intake, cognitive abilities and functional activities of daily living, and in some cases increased physical pain, agitation, loneliness and depression (Hugelius et al 2021).
Canevelli et al (2020) reported that the use of social distancing and personal protective equipment (PPE) including face masks during the COVID-19 pandemic inhibited strategies such as distraction, stimulation and social interaction that are routinely used to manage the symptoms of dementia. In addition, due to the constraints on visiting during the pandemic, some experts called for a focus on staff training in emotion-based communication – for example using music or photographs – to reduce barriers between family members and patients (Khatoonabadi et al 2020). Such barriers remain a challenge in the author’s locality, with face masks still being worn at the time of writing by healthcare staff engaged in patient-facing tasks.
During the pandemic, healthcare staff also reported challenges in developing rapport with patients because PPE limited the use of facial expressions, physical touch and physical proximity (Hoernke et al 2021). Wearing full PPE could be intimidating for patients and potentially exacerbate their distress. In addition, PPE could have serious negative effects for people with hearing impairments who rely on lip reading (Hoernke et al 2021).
Concerns about family, fear of infection and a lack of PPE were also risk factors associated with adverse mental health outcomes for healthcare staff during the pandemic (de Kock et al 2021). Rao et al (2021) interviewed hospital staff in the US, who reported experiencing compassion fatigue and depersonalisation during the pandemic, which negatively affected their ability to develop rapport with patients and, in turn, affected care quality.
Throughout the pandemic, nurses were resilient. Cousins et al (2020) emphasised that staff working in care homes were frequently confronted with distressing circumstances including elevated death rates among residents and severe resources shortages. Despite the challenges of the pandemic, healthcare staff continued to care for people with dementia and fulfil roles that placed them at increased risk of exposure to COVID-19 (Keng et al 2020, Sanders et al 2020).
Following the COVID-19 pandemic, it is important that resources and training are available to support healthcare staff in providing evidence-based care to people with dementia. However, even before the pandemic, inadequate training of healthcare professionals was a major factor influencing standards of dementia care (Royal College of Psychiatrists 2019). The Welsh Government (2018) proposed a higher level of education and awareness training for all healthcare professionals to increase understanding and develop a ‘dementia friendly’ culture among healthcare professionals and the general public.
The Care Council for Wales (2016) and Skills for Health et al (2018) provided holistic learning frameworks that aimed to shift the focus of dementia care away from symptomatic deficits and towards inclusive person-centred approaches. These frameworks aimed to centralise education around the principles of compassion, competency and engagement, and was tailored towards ‘what matters most’ to people affected by dementia. The Care Council for Wales (2016) Good Work framework includes a section on ‘learning and development topics for informed people’ that was largely developed from the Alzheimer’s Society’s Dementia Friends initiative. This section uses a range of principles to communicate core messages about dementia as shown in Table 1 (Alzheimer’s Society 2022).
|Core messages||Supporting evidence|
|Dementia is not a natural part of ageing||
|Dementia is caused by diseases of the brain||
|Dementia does not only cause memory loss||
|People can still live well with dementia||
The Welsh Government (2018) proposed that all front-line healthcare professionals should receive an appropriate level of dementia care training, as detailed in the Good Work framework, including being able to identify common dementia symptoms and refer patients on for further assessment when necessary. The Good Work framework offers a structure that nurses can use to develop learning outcomes in line with their level of expertise and the level of contact they have with people with dementia (Care Council for Wales 2016, Skills for Health et al 2018).
According to Jones et al (2019), in general hospitals additional care is often required to supervise people with dementia who are in an unfamiliar environment. Nurses working in acute settings can find it challenging to provide the necessary care to people with dementia alongside their general duties, and the availability of supplementary staff is frequently inadequate (Anderson et al 2021). Therefore, it has been recommended that nurses receive clinical supervision on a one-to-one basis, or in groups, to reflect on their emotional reactions and analyse how these can influence patients (Insua-Summerhays et al 2018, Nursing and Midwifery Council 2018).
Law et al (2019) emphasised the need for healthcare staff working in dementia settings to explore their emotional reactions and thereby reduce any adverse effects on care provision, which might arise through staff frustration or burnout. This was reflected in Kitwood’s (1997) work on personhood and the psychological needs of people with dementia, which was the basis of later person-centred theories of dementia care such as the VIPS (values, individualised approach, perspective of the person with dementia and social environment) model (Brooker and Latham 2016) and the Senses Framework (Nolan 2012, Mitchell and Agnelli 2015).
The VIPS model provides a framework that nurses working with people with dementia can use to deliver Kitwood’s (1997) person-centred theories in practice. Table 2 shows how nurses caring for people with dementia can apply the VIPS model.
|VIPS principles (adapted for practical use in people with dementia)||Reflective thinking|
|Value for the person with dementia||Do your working actions show value, respect and integrity for the individual?|
|Individual needs of the person with dementia||Does your approach demonstrate regard for the person as a unique individual?|
|Perspective of the person with dementia||Have you attempted to empathise with the person’s perspective, opinion or point of view, and considered how your actions may be interpreted?|
|Supportive social psychology||Does your approach ensure that the person feels connected, and that their social confidence has been supported?|
(Adapted from Brooker and Latham 2016)
The Senses Framework also encourages collaborative reflection but involves nurses working with patients’ family members to obtain important information about the person; for example, their dietary preferences and routines for tasks such as bathing (Dewar and Nolan 2013). Box 1 shows how nurses can use the Senses Framework to engage with the carers and family members of people with dementia.
• Security – assist the family members of people with dementia in feeling informed
• Belonging – support people with dementia and their family members to maintain their relationships, and assist the person with dementia to remain socially connected
• Continuity – enable the family members of people with dementia to continue to share activities and remain involved in care planning across various healthcare settings
• Purpose – assist in maintaining the identity of people with dementia by gaining information from their family members that the person may no longer be able to express
• Achievements and significance – recognise the contribution of carers and family members, and their knowledge of the person with dementia, and recognise that their caring efforts still make a difference
(Adapted from Nolan 2012)
Gillis et al (2019) explained that any escalation of psychological distress in people with dementia places further pressure on caregivers, often resulting in interpersonal detachment. Therefore, it is important for nurses to explore effective interventions for decreasing behavioural symptoms associated with distress (McCormack and McCance 2017). The ABC (antecedence, behaviour and consequence) model can assist nurses to understand the triggers for behaviour that challenges in people with dementia, as well as enabling them to reflect on their approach to the person’s behaviour by modifying the environment (Moniz-Cook 2019). Techniques that nurses can use to modify the environment include using ‘dementia-friendly’ clocks, reducing noise levels, using signage to support an individual to navigate their surroundings and ensuring personal items are visible. In addition, the PIECES (physical, intellectual and emotional health, capabilities, environment and the social being) framework (Yous et al 2020) can assist nurses in undertaking holistic assessments and understanding how to adapt a care plan to meet the unmet needs of a person with dementia.
Gerada (2021) and Markey et al (2021) reflected on negative leadership responses to the COVID-19 pandemic, including prioritising ‘science over ethics’ and instances where the rapid resolution of challenges resulted in ‘ethically blind decisions’. These responses included the banning of all ward visits without reference to evidence-based guidelines, and a lack of respect for the skills required for nurses to appropriately care for people with dementia.
In the future, developing nurses’ skills in recognising, understanding and responding to the needs of people with dementia is crucial (Brossard Saxell et al 2021). This should extend to supervision for nurses, and an acknowledgment of the resilience required when responding to stressful situations such as managing the behavioural symptoms of dementia (Casey et al 2017, Pollock et al 2017). Promoting person-centred care is essential and nurse leaders should support a strategy that redirects the care perspective from one of ‘managing difficult-to-engage patients’ to one that seeks to address patients’ unmet needs.
The COVID-19 pandemic had significant adverse effects on the care of people with dementia. Following the pandemic, healthcare organisations and nurse leaders should support dementia awareness and education for their staff to promote effective person-centred care, which is fundamental to achieving positive outcomes for people with dementia. Nurses need to be aware of their emotional responses and how they communicate when caring for people with dementia; they should also be supported via clinical supervision and offered opportunities to reflect on their workplace experiences.
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