Impact statement

Dementia has become a global public health concern, with a projected increase in its prevalence in the coming years. Yet, the availability of specialist nurses capable of delivering the complex care needed for individuals afflicted by dementia remains limited. There is a shortage of specialist trained dementia nurses in the UK. Moreover, many qualified nurses lack the requisite skills and knowledge to provide person-centred care to dementia patients. This shortcoming can be linked to the absence of comprehensive dementia-focussed curricula within the pre-registration nursing programmes. It is indeed surprising that, despite the escalating demands prompted by an ageing population and the mounting urgency for specialist nursing care amid the dementia epidemic, numerous inquiries and committees tasked with improving nursing education failed to recommend pre-registration nursing programmes that could lead to Registered Nurse (RN) – Dementia. This article advocates for the establishment of a dedicated pre-registration nursing programmes leading to Registered Nurse (RN) – Dementia to address the critical shortage of specialist dementia nurses. The establishment of pre-registration nursing programmes in dementia care would guarantee that nurses are equipped with the indispensable competencies to provide person-centred and preventive care. Ultimately, it is hoped that this article will serve as a catalyst for countries confronting a shortage of specialist dementia nurses to consider the implementation of a pre-registration nursing programmes specific to dementia care to alleviate these problems.

Dementia: An overview

Dementia is a broad term that encompasses group of diseases that are typically chronic or progressive, affecting multiple cognitive functions including memory, thinking, and behaviour, and significantly impair a person’s ability to carry out everyday activities (American Psychiatric Association, 2013; Prince et al., Reference Prince, Albanese, Guerchet and Prina2014; Dixon et al., Reference Dixon, Anderson and Lazar2022; Senanayake, Reference Senanayake2022). Cognitive impairment is frequently accompanied, and occasionally preceded, by changes in mood, emotional control, behaviour or motivation. Alzheimer’s disease is the most common type of dementia, accounting for 60–70% of cases (Machado et al., Reference Machado, Tavares, Martins, Barbosa, González and Leithardt2021; Sargunam, Reference Sargunam2021; World Health Organisation (WHO), 2023). Other major types of dementia are vascular dementia, Lewy body dementia, and a spectrum of diseases that contribute to frontotemporal dementia (World Health Organisation (WHO), 2023).

More than 55 million people worldwide have dementia, and about 10 million new cases are diagnosed each year. Dementia is now the seventh leading cause of death and one of the main causes of impairment and dependency in older people (World Health Organisation (WHO), 2023). Dementia affects people in many ways, including physically, mentally, socially and economically. It affects not only people afflicted with the disease, but also their caregivers, families and society (Häikiö et al., Reference Häikiö, Sagbakken and Rugkåsa2019). One of the challenges is that a lack of awareness and understanding of dementia can lead to stigma and barriers to assessment, diagnosis, treatment and care (Sideman et al., Reference Sideman, Al-Rousan, Tsoy and Piña Escudero2022; World Health Organisation (WHO), 2023).

Atri (Reference Atri2019) observes that the UK is facing an epidemic of dementia. Recent data suggest that there are 944,000 people in the UK with dementia (Dementia Statistics UK, 2022), this figure is expected to increase to 2 million by 2050 (Wittenberg et al., Reference Wittenberg, Knapp, Hu, Comas-Herrera, King, Rehill, Shi, Banerjee, Patel, Jagger and Kingston2019). Furthermore, an estimated 42,000 people living with dementia have early-onset dementia, where the condition is diagnosed before the age of 60 (Wright and McKeown, Reference Wright, McKeown, Wright and McKeown2018). In the UK, it is estimated that 60% of patients receiving home care services have a diagnosis of dementia; 25% of hospital beds are occupied by dementia patients, moreover, about 69% of nursing home residents have dementia (Dementia Statistics UK, 2022). Etkind et al. (Reference Etkind, Bone, Gomes, Lovell, Evans, Higgingson and Murtagh2017) further highlight that the number of dementia patients requiring end-of-life care is expected to quadruple by 2040. The cost of dementia care to society in the UK is estimated to be £34.77 billion per year, and this cost is projected to rise sharply as the population ages (Public Health England, 2019). However, chronic underfunding in dementia care renders the care system inadequate to meet the needs of patients which is unfair to dementia patients and their families (Alzheimer’s Wittenberg et al. Reference Wittenberg, Hu, Barraza-Araiza and Rehill2019). The foregoing demonstrates a significant problem posed by the ever-increasing dementia care needs, as well as a clear indication of an increasing nursing care burden requiring specialised skills. To mitigate against the dementia epidemic, it is prudent for policy makers to consider creating a stand-alone pre-registration branch of dementia nurse education to future-proof dementia nursing care.

Addressing the deficits in dementia education and training

It is estimated that 77% of people with dementia also have other comorbidities, the most common being transient ischaemic attack, Parkinson’s disease, coronary heart disease, hypertension, diabetes, anxiety and depression (Public Health England, 2019). Also, behaviours that challenge are a common characteristic of dementia. It is estimated that 92% of patients with dementia present with this trait (Kwon and Lee, Reference Kwon and Lee2021). All of this suggest that the care needs and management of individuals with dementia are multi-layered and extensive (Grand et al., Reference Grand, Caspar and Macdonald2011). Yet, there is a large and growing body of evidence suggesting that many nurses lack the necessary skills and knowledge in dementia care (Royal College of Psychiatrists (RCPsych), 2011; Surr et al., Reference Surr, Gates, Irving, Oyebode, Smith, Sahdia, Drury and Dennison2017).

The U.K. Higher Education for Dementia Network (HEDN) has been a leading force in the early development of dementia education for pre-registration health and social care professionals over the past two decades, and it continues to play a significant role in the development of dementia education research and pedagogical development within Higher Education Institutions (HEIs) (HEDN, 2022). However, historically, the evolution of organic and localised approaches to dementia care (Hibberd, Reference Hibberd2011), poor pedagogical approaches and a lack of standardised education and training in dementia care (Smith et al., Reference Smith, Parveen, Sass, Drury, Oyebode and Surr2019) may have contributed to dementia patients being underserved in terms of their mental health, physical health and social care (Cooper et al., Reference Cooper, Lodwick, Walters, Raine, Manthorpe, Iliffe and Petersen2017). This finding adds weight to our call for the establishment of pre-registration nursing programmes in dementia care.

Reports and commissions into nursing education in the UK

It is surprising that, despite numerous reports and commissions into nursing education, such as the Briggs Report in 1972 (Chapman, Reference Chapman1973) and the Willis Commission (2012), no recommendations were made for nursing to offer pre-registration education in dementia care. The Willis Commission (2012), which was tasked with gathering evidence on the best methods of delivering consistent high-quality nursing education in the UK, did not foresee nor future proof the dementia pandemic by proposing a specialist field of dementia nursing care. This is particularly concerning given the growing demands of an ageing population and the increasing need for specialised nursing care for dementia patients (Crowther et al., Reference Crowther, Wilson, Horton and Lloyd-Williams2013; Etkind et al., Reference Etkind, Bone, Gomes, Lovell, Evans, Higgingson and Murtagh2017).

The Briggs Report was a landmark document that led to the formation of the Nurses, Midwives and Health Visitors Act 1979 (Chapman, Reference Chapman1973). Tierney (Reference Tierney2022) points out that the Briggs Report was a ‘breakthrough’ for nursing education and research in the UK, as it concluded that nursing training in the UK was insufficient to meet the needs of modern society. This led to sweeping changes in professional nursing education. We are now at another crossroads in the history of nursing education. The ageing population is putting increasing pressure on the health and social care system, and the demand for dementia care is growing. To meet this demand, we need to ensure that all nurses have the skills and knowledge to care for people with dementia. One way to do this would be to offer pre-registration education in dementia care. This would ensure that all nurses are equipped to provide high-quality care to people with dementia, regardless of their setting. It would also help to raise awareness of dementia and its impact on individuals and their families.

Policy makers for nurse education have always been open to changes in response to the health needs of the population (Health Education England (HEE), 2015). For example, following the Briggs Report in 1972, professional nursing gained traction and the four branches of nursing were established in 1983: mental health, children, learning disability, and adult. Diploma level nurse training was transferred from hospital-based schools to colleges and universities beginning in 1986, and all nursing courses in the UK became degree level in 2009 (Thomas, Reference Thomas2016). Blane (Reference Blane and Scambler1991) observes that nursing evolved into four distinct characteristics: It became a highly skilled sector with a well-defined body of specialised knowledge; it established a monopoly over practitioner regulation; it became autonomous to organise, develop and define professional responsibility; and it had a code of ethics that prohibits patient exploitation and professional accountability. Yet, when the Nursing and Midwifery Council (NMC) recently published its pre-registration nursing educational standards (NMC, 2018), it did not recognise the usefulness of a standalone branch for dementia nursing. Remarkably, the NMC (2018) claims that nurses should be competent in providing care for patients with complex dementia needs, but they do not elaborate on how these nurses are to be trained. This is despite the evidence that pre-qualification dementia education can improve knowledge, patient care and outcomes (Rahman and Dening, Reference Rahman and Dening2016; Williams and Daley, Reference Williams and Daley2021). Some mental health nursing academics have even gone as far as to say that the NMC’s standards are too generic and an attack on nursing specialism (Connell et al., Reference Connell, Jones, Haslam, Firestone, Pope and Thompson2022; Mental Health Nurses Academic UK, 2023). We feel that this is a missed opportunity, as dementia is a growing public health challenge and there is a need for more specialist dementia nurses. We concede, however, that due to the variation and heterogeneity in the design of nursing courses in various academic education institutes (AEIs), any specialised dementia nursing education is likely to confront a global challenge of standardisation.

Learning from learning disability nursing

In the UK, more than 1.5 million people have learning disabilities. It is estimated that learning disability affects 2.16% of adults and 2.5% of children (Mencap, 2022). Today, while many people with learning disabilities live independently, some with specialist support, learning disability generally, has unpleasant roots. Many individuals with learning disabilities were segregated from their communities around the turn of the 20th century. They lived in outdated, inappropriate workhouses or large institution referred to as ‘asylums’, far from their families and society (Gates, Reference Gates2022). However, over time, attitudes and policies affecting the lives of people with learning disabilities and those who work with them have shifted. Towards to end of the 20th century, things began to improve with move from institutional care to residential care and ‘ordinary living’. The 21st century began with increased governmental concern for the inclusion and empowerment of people with learning disabilities. Policies have emphasised the importance of protecting people with learning disabilities from crime, abuse and exploitation as their freedoms and community presence grow (Williams, Reference Williams2013; Gilbert, Reference Gilbert and Jukes2014).

Despite its unpleasant roots, one notable aspect is that nursing care for people with learning disabilities was available much earlier. Stephenson (Reference Stephenson2019) discusses that the first ‘mental deficiency nursing’ accreditation was given out by the Medical Psychological Association in 1919, and training for learning disability nurses was subsequently brought in line with training for other branches after the formation of NHS in 1948. Many patients abuse scandals and the eugenics movement, according to Gates (Reference Gates2022), predominated learning disability practice for a long time. However, learning disability nursing practice has steadily changed away from control and towards compassionate and empowering care.

In summary, learning disability nursing has a long history and has developed significantly over time. There are similarities between learning disability nursing and dementia care, such as the need for specialist knowledge and skills. By drawing on the experience of learning disability nursing, we can help to ensure that the future of dementia care is strong and sustainable.

Pre-registration nursing education: The route to quality dementia care

Our rallying cry is that all pathways to quality dementia care must be through pre-registration nursing education. Although neither recontextualising nor repudiating care of dementia patients is our intention. However, we are concerned by studies that show that the emotional and physical health needs of dementia patients are not being met (Surr et al., Reference Surr, Gates, Irving, Oyebode, Smith, Sahdia, Drury and Dennison2017; Ganga, Reference Ganga2022). A plausible explanation is that most of the dementia care workforce is unqualified, underpaid, and has no clear career path (Surr et al., Reference Surr, Gates, Irving, Oyebode, Smith, Sahdia, Drury and Dennison2017). The dire state of dementia care is demonstrated in a systematic review by Aledeh and Adam (Reference Aledeh and Adam2020), who found that dementia carers fall into two categories: often isolated female informal/family carers providing care at home, and inadequately trained formal/professional carers. It is sufficient to argue, albeit cautiously, that there are pockets of prehistoric era to 18th century care described above for some of today’s dementia patients. While we recognise that family and other unpaid carers make significant contributions to the support of people with dementia, investing in pre-registration nursing education to train dementia experts will ensure that people with dementia and their families receive high-quality care (Wittenberg et al., Reference Wittenberg, Knapp, Hu, Comas-Herrera, King, Rehill, Shi, Banerjee, Patel, Jagger and Kingston2019). As discussed above, our primary goal is for universities to offer accessible specialist dementia training to help address the shortage in dementia care. Our proposal is opposite to the current trend in which a significant amount of dementia-training is provided in-house, by private providers, or in further and higher education institutions who offer post-graduate training (Surr et al., Reference Surr, Gates, Irving, Oyebode, Smith, Sahdia, Drury and Dennison2017). Our argument is that these courses do not necessarily equip graduates with clinical or practical skills to manage and coordinate care of dementia patients.

Contribution to global research and learning

Many countries are facing a shortage of specialist dementia nurses (World Health Organisation (WHO), 2022). Therefore, this article provides an important thought for countries to consider a stand-alone pre-registration branch of dementia nurse education. This would lead to a more specialised workforce with the skills and knowledge to provide high-quality care to people with dementia.