Support workers knowledge, skills and education relating to dementia – a national survey

Background

It is estimated that over 55 million people were living with dementia worldwide in 2020 and this number is projected to approximately double every twenty years, reaching 78 million in 2030 and 139 million in 2050¹. With cognitive decline, there is often an associated physical decline² and thus an increase in healthcare demands. As it is estimated that 60% of face-to-face patient care in the NHS is provided by non-registered staff³, it can be presumed that a large proportion of people living with dementia (PLwD) will receive face-to-face care from a non-registered professional. There are almost 400,000 healthcare assistants (HCAs) and clinical support workers in the UK who work alongside nurses and other health professionals⁴ and despite providing the majority of face-to-face care, evidence suggests that non-registered staff only receive 5% of the NHS’ training budget³.

The Dementia Training Standards Framework (DTSF)⁵, provides a structured guide for dementia training across health and social care sectors. The framework outlines key competencies at various levels, recommending that all staff, including support workers, complete level 1 (awareness) and level 2 (intermediate) training to ensure a foundational understanding of dementia care. Although the DTSF is widely recognised for setting baseline competencies in dementia care across health and social care roles, but specific evaluations of its impact on support workers, especially in terms of long-term outcomes, are limited.

There is little research investigating the effectiveness of support workers working with PLwD⁶, nor is there any evidence about the knowledge of support workers about dementia. One systematic review⁷ suggested a positive effect of support workers on the quality of life for PLwD and the reduction in carer burden – however, it also highlighted the lack of high-quality evidence. The NHS Long Term Plan⁸ and the NHS Long Term Workforce Plan⁹ recognise the importance of support workers to deliver effective and safe NHS services. The Long Term Workforce Plan particularly emphasises the importance of promoting routes to professional qualifications for support workers to expand their scope of practice. However, the availability and uptake of training for support workers relating to dementia remains unclear despite the increasing demand for healthcare professionals to be able to effectively care for PLwD. Thus, this study aimed to explore the knowledge that support workers have relating to dementia and the access to training and support that they have received. It also sought to understand the thoughts and attitudes of support workers toward dementia and whether there is any correlation between knowledge and attitudes toward people living with dementia.

Methods

A cross-sectional web-based survey was undertaken using JISC Online Surveys, which is subscribed to by the University of Exeter. The survey was open from 1^st February 2024 to 1^st April 2024 and employed a convenience sampling strategy.

An introduction and a link to the participant information sheet including the inclusion criteria was provided on the first page of the survey. There was also information provided about GDPR. To complete the survey, individuals were asked to confirm that they were a support worker working in England and regularly meet patients/clients who are living with dementia.

Respondents consented to participate by clicking the final submit button once the survey was completed. Survey responses were anonymous unless contact details were provided for study updates or other research opportunities. These details were stored securely and separately from the survey responses. Although it was anticipated that there would be little identifying data given by respondents, there was the option for free text where identifying data could be entered, therefore, all data were checked and any identifiable data was removed/anonymised to prevent identification. This anonymisation was completed before the analysis.

Analysis

Before analysis, all data were checked and cleaned. Two responses were excluded as the participant noted that they were not working as a support worker. Any duplicate entries were removed if evident. Descriptive statistics (mean, standard deviation, frequencies, and percentages) were calculated for closed questions using the analysis function provided by JISC.

For the validated questionnaires, we compared continuous data (e.g., mean DKAS and DAS scores) with categorical variables (e.g., years of experience) using parametric tests, such as Analysis of Variance (ANOVA). We also sought to explore whether there was any correlation between knowledge and attitude towards dementia using Pearson’s correlation. For the purpose of statistical analysis, the "occupational grade" variable was numerically coded to enable comparisons. Each NHS band (e.g., Bands 2, 3, 4) was assigned a corresponding numeric value to facilitate statistical testing. For example, comparisons were made between Bands 2 and 4 by using these coded values to compute t-tests and correlations, allowing us to examine potential differences in knowledge and attitudes between these groups. Before comparing variables, the Kolmogorov–Smirnov test was used to determine the normality of the distribution to guide the statistical analysis. Independent t-tests were used to compare between group differences.

For questions involving free text responses, answers were collated and grouped into themes. Data were downloaded into Excel, each row representing individual respondents and each column the research questions. Survey results were reported according to the Checklist for Reporting Results of Internet E-surveys (CHERRIES)¹².

Results

One hundred and nine unique respondents completed the survey (Table 1) representing a variety of professional groups working in a variety of different settings. The support workers were spread over the seven geographical regions as categorised by NHS England.

Discussion

This study aimed to explore the knowledge that support workers have relating to dementia and the access to training and support that they have received. It also sought to understand the thoughts and attitudes of support workers toward dementia and whether there is any correlation between their knowledge and attitudes. Our data suggests that while the majority of participants had received training relating to dementia, they did not feel it was sufficient to be able to give patients the optimum care, despite their knowledge generally being high.

The knowledge levels observed in our sample, as measured by the DKAS, appear higher than those reported in previous standardisation studies among support workers¹⁰. This may suggest that dementia training programs in England, guided by frameworks like the DTSF, have a positive effect on knowledge levels. Similarly, the attitudes observed in our sample align with positive attitudes reported by O’Connor and McFadden¹¹ in their work with the Dementia Attitudes Scale (DAS), indicating that training may also support compassionate attitudes in dementia care settings.

While our findings indicate gaps in knowledge and confidence, it is possible that some support workers may not have full access to or awareness of the DTSF resources. Therefore, improving accessibility and awareness of these established training pathways may be a cost-effective strategy for enhancing knowledge across support worker roles. Additionally, given that the DTSF and similar training frameworks are designed to provide standardised skills across different care roles, targeted reinforcement of the DTSF competencies could be beneficial, especially if integrated into routine supervision or mentorship programs within the NHS.

To ensure training is both effective and cost-effective, future initiatives might consider integrating simulation-based training and peer support, which have been shown to improve practical skills in dementia care¹³. Simulation exercises could help support workers experience the challenges faced by individuals with dementia, fostering empathy and improving their ability to respond to challenging behaviours. Peer-led reflective sessions, where workers share experiences and discuss strategies for managing symptoms, could also support practical application of the DTSF competencies without requiring extensive additional resources.

There is evidence to suggest that training programs enhance support workers’ understanding of dementia, leading to better care practices. Approaches such as “Dementia Care Mapping” have been shown to improve caregivers’ skills in recognising and responding to the needs of PLwD¹⁴. Many of our participants reported challenges communicating effectively with PLwD. Evidence suggests that training improves communication skills, enabling support workers to interact more effectively. This can lead to improved patient outcomes, such as reduced agitation and improved cooperation with care routines¹⁵. Further challenges cited were around the challenges of managing behavioural and psychological symptoms (BPSD) and studies indicate that bespoke training can aid support workers to better manage these symptoms of dementia¹³.

Our analysis was conducted to explore the relationship between years of experience, occupational banding, and attitudes and knowledge about dementia found no significant relationship between years of experience and attitudes (DAS score) or knowledge (DKAT score) about dementia. Similarly, there was no significant relationship between occupational level and attitudes towards dementia. However, a significant difference in dementia knowledge was observed between different occupational levels, with higher occupational levels showing greater knowledge. These findings suggest that neither years of experience nor occupational grading levels significantly influence attitudes towards dementia, though higher bands may have better dementia knowledge.

Studies indicate that those who receive specialised training in dementia care tend to have more positive attitudes and are better equipped to provide high-quality care¹⁵. The World Alzheimer Report 2019 by Alzheimer's Disease International highlights the varying attitudes towards dementia, including those of support workers. The report found significant differences in attitudes, with some caregivers showing high levels of empathy and others expressing stigmatising beliefs about dementia¹⁶.

Our data suggested a moderate positive correlation between knowledge and attitudes toward people living with dementia (PLwD). However, it is essential to note that correlation does not imply causation, and the association should not be interpreted as direct evidence that increased knowledge causes improved attitudes. While training may contribute to the knowledge levels observed, our study did not assess the specific sources of knowledge, meaning we cannot confirm that training alone is responsible. This supports other findings which suggest that training programs provide support workers with a better understanding of dementia, including its symptoms, progression, and the needs of those affected¹⁷. By addressing common myths and stigma associated with dementia, training may help support workers develop more accurate views of PLwD and strategies to help support them. Educational sessions that highlight the abilities and potential of PLwD, rather than just their limitations, can reduce stigmatising beliefs¹⁸.

While our study highlights the role of training in enhancing dementia knowledge and improving attitudes among support workers, we recognise that training alone may not be sufficient to prepare staff for the complexities of dementia care. Existing literature suggests that a supportive organisational environment, regular supervision, and access to mentorship are essential in reinforcing knowledge and sustaining positive attitudes¹⁵. Organisational culture that fosters openness, empathy, and collaboration may empower support workers to address challenging behaviours and communication barriers in ways that training alone cannot achieve. Ongoing support from supervisors and peers, along with structured opportunities for reflection and feedback, can be especially effective in helping staff apply learned skills in real-world contexts. This layered approach, integrating formal training with organisational and team-based support, is likely to build resilience and confidence, ultimately improving the quality of dementia care.

Conclusion

Our findings indicate that while support workers generally possess a high level of knowledge about dementia, many feel inadequately prepared to provide the level of care needed by individuals living with dementia, especially when facing challenges related to communication and managing behavioural symptoms. This suggests a pressing need not just for additional training but for more targeted, accessible, and practical dementia care training tailored to support workers’ unique needs.

The Dementia Training Standards Framework (DTSF) offers a foundational structure, yet current training delivery methods may be insufficient for equipping support workers with the practical skills required in everyday settings. Given that support workers comprise one of the largest workforce groups in the NHS, yet receive a small proportion of the training budget, it is essential for healthcare leaders, policy makers, and NHS Education bodies to consider cost-effective, flexible, and scalable training solutions. Options such as online learning modules, simulation-based training, and blended learning approaches—combining digital training with in-person supervision or peer-led reflective sessions—could be instrumental in enhancing skill development without significantly increasing costs.

To implement these programs effectively, a collaborative approach is required. Stakeholders such as NHS training bodies, healthcare providers, and charitable organisations specialising in dementia care (e.g., Alzheimer’s Society UK) could play critical roles in producing and delivering this training. Funding could be sourced through NHS training budgets or collaborative grants, with a focus on scalable methods that can accommodate the varied schedules and resource constraints of support workers.

Ensuring that support workers are equipped with comprehensive dementia care skills requires strategic investment from NHS leadership and a re-evaluation of budget allocation. By dedicating resources specifically for dementia care training for support workers, the NHS can support this essential workforce group, ultimately improving patient outcomes and the quality of dementia care. We urge policy makers to prioritise this investment, recognising the substantial and direct impact that well-prepared support workers have on the lives of people living with dementia.

Strengths and limitations

We recognise that the relatively small number of respondents could not be considered representative to the whole population of support workers in England, however, the survey offers insights into the training needs and requirements for our support workforce. However, we were able to sample a wide range of different groups of support workers across a variety of different settings to gain insights into the workforce as a whole.

Our study relied on an online survey platform, which may not have been readily accessible to all support workers. Barriers such as limited digital resources, literacy challenges, and English fluency could have restricted participation among certain groups, potentially skewing the demographics of our sample. Notably, the majority of respondents identified as white British, which may reflect an accessibility limitation that could affect the generalisability of our findings.

To ensure respondents felt at ease and were able to participate fully, all questions were optional. This approach aimed to minimise any potential discomfort or disengagement by allowing respondents the flexibility to answer only those questions they felt comfortable with. Although dementia care is not typically considered a sensitive topic, we adopted this approach to encourage honest responses across a diverse workforce with varying levels of comfort and experience with dementia care. However, this flexibility may have led to some incomplete responses. We acknowledge this as a limitation, as it may have resulted in missing data for certain questions, potentially affecting the comprehensiveness of the dataset.

A small proportion (11%) of participants identified as Band 5 or Band 6, levels which generally entail more senior responsibilities beyond traditional support worker duties. While these participants identified as support workers, it is possible their views and knowledge could be influenced by higher-band responsibilities, which may differ from those in lower-band roles. Future studies might consider eligibility criteria to focus on Bands 2–4, ensuring the sample aligns closely with typical support worker roles.

Ethical approval and consent

Ethical approval was granted on the 11^th January 2024 from the Kings College London – reference MRA-23/24-41002 .Informed consent was obtained electronically from all participants. All procedures, including the informed consent process, were conducted in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000.