Exploring Knowledge and Awareness of Lewy Body Dementia Among Staff in Long-Term Care Facilities

Introduction

Lewy body dementia (LBD), which encompasses both Parkinson’s disease dementia (PDD) and dementia with Lewy bodies (DLB),¹ represents the second most common form of neurodegenerative dementia worldwide, and is estimated to account for approximately 4.2% to 7.5% of dementia cases.² However, despite its prevalence, LBD remains largely under- and mis-diagnosed compared to other dementia subtypes, likely contributed to by a lack of familiarity among health professionals about the signs and symptoms of the condition.^2,3 This lack of awareness in both clinical and public contexts can foster feelings of isolation and mistrust for both patients and caregivers.⁴

LBD is associated with a complex clinical phenotype, with symptoms including fluctuating cognition, visual hallucinations, motor symptoms, and sleep disruption.^5,6 These symptoms can significantly impact the quality of life of individuals living with LBD, increase patient dependency and costs of care, and make supporting and caring for individuals with LBD challenging.^7,8 Individuals with LBD also face poorer prognoses—including increased likelihood of eventually being admitted to a long-term care (LTC) facility or nursing home—compared to those with Alzheimer’s disease (AD).⁴ A Swedish study conducted by Zahirovic et al⁹ focusing on the prevalence of DLB symptoms in LTC facilities estimated that 16–20% of care home residents experience two or more symptoms that fall within the LBD spectrum.

LBD can also be difficult to manage and treat pharmacologically, with neuroleptics being relatively contraindicated in this population.¹⁰ As such, failure to recognise or correctly diagnose LBD may result in treating these patients with medications that could cause adverse effects. However, there appears to be a lack of evidence regarding the level of knowledge on this topic amongst LTC staff. O’Donnell et al¹¹ found that care home staff lacked sufficient knowledge required to manage challenging behaviours associated with dementia, and were aware of these knowledge gaps.¹¹ Although this study is not LBD-specific, it suggests that staff training in challenging behaviour and medication management, along with improved collaboration, is vital for person-centered care of dementia patients. Moniz-Cook et al¹² outlines similar suggestions, recommending communication and interaction training for carers to have the ability to appropriately manage challenging behaviours.

As of 2023, 553 LTC facilities were registered in Ireland according to the Health Information and Quality Authority (HIQA).¹³ While it is estimated that >20% of the 65,000 people with dementia in Ireland have LBD,¹⁴ there is currently no published data specific to Irish nursing home populations regarding LBD prevalence. However, according to a study carried out in UK care homes, an estimated 57% of residents in the participating care homes had dementia, with 7.4% diagnosed with DLB and 4.1% with PDD.¹⁵ It can be estimated that the situation in Ireland may be similar. A 2020 survey conducted by Nursing Homes Ireland (NHI) reported that private and voluntary LTC facilities employ over 36,000 individuals.¹⁶ Despite the size of this workforce and the fact that LBD is the second most common form of dementia, there have been no studies to date examining LBD-related knowledge, awareness, or care practices among staff in Irish LTC facilities. However there have been two similar international studies which reported that nursing staff in LTC facilities felt that there was a lack of awareness and knowledge surrounding LBD in these settings.^15,17

The current study seeks to address this gap by ascertaining current levels of knowledge and awareness of LBD among care staff in Irish LTC facilities, along with attitudes and perceived practices. These findings are intended to inform the development of tailored training programs to enhance staff understanding and improve the quality of care provided. Although the Lewy Body Academy (2022, Belfast)¹⁸ represents the only dedicated LBD programme in Ireland, it was not integrated within LTC training structures. By focusing on baseline assessment, this study provides foundational data to guide the design and future evaluation of LBD-specific educational interventions in LTC settings.

Methods

Survey Design and Development

We developed an anonymous, self-reported online survey using survey monkey to assess healthcare staff knowledge, attitudes, and perceived practices (KAP) related to the care and support of residents with LBD in LTC facilities. Survey development was informed by a review of the existing literature on LBD awareness, symptoms, dementia care competencies, and staff educational needs in LTC settings.^6,19,20 The questions utilised in this survey were adapted from analogous studies and surveys, such as the Dementia Knowledge Assessment Scale²¹ and the Dementia Attitude Scale,²² with modifications made to ensure relevance to LBD and the specific context of Irish LTC facilities. As the survey comprised standalone knowledge items, binary factual questions, and single-item attitude measures rather than multi-item psychometric scales assessing a single latent construct, internal consistency metrics such as Cronbach’s alpha were not applicable.

To enhance content validity and ensure the survey captured perspectives relevant to real-world care environments, input was sought from a range of Patient and Public Involvement (PPI) representatives. Specifically, LTC facility staff such as nurses, healthcare assistants, and allied health professionals, and people with lived experience of LBD and family carers of individuals living with LBD. No input was sought from individuals without direct professional or lived experience of LBD. Stakeholder feedback contributed to the refinement of survey items, and incorporating input from PPI contributors with lived experience was a deliberate strategy. It ensured that survey items accurately captured the practical realities and challenges of care from both caregiver and care recipient perspectives. This approach enhanced the content validity of the instrument by emphasising relevance and clarity over solely professional knowledge and aligns with established best-practice recommendations in dementia research, advocating co-design with individuals directly affected by the condition.²³

The survey consisted of three sections:

Section 1. Demographic information: this section consisted of five questions capturing gender, age category, highest level of education, county of work, and staff position.

Section 2. Knowledge of LBD: this section consisted of three statements and seven questions about LBD, including symptom recognition and LBD diagnostic criteria. Response options were: “agree” or “disagree”; or “yes” or “no”. Additionally, respondents were asked to rate their perceived level of knowledge of LBD on a scale from 1–10, with 1 indicating that they felt they had a very low level of knowledge of LBD and 10 indicating excellent knowledge of LBD. To enrich the data with qualitative insights, we also included an open-ended question asking participants to name any other forms of dementia that they knew of besides AD.

Section 3. Attitudes towards caring for people with LBD: this section consisted of five statements relating to job satisfaction, confidence levels, and willingness to engage in further training. Respondents were asked to rate their agreement to the statement on a five-level Likert scale, ranging from “strongly disagree” to “strongly agree”. Response options to the statement “if training specific for dementia with Lewy bodies was offered to me I would sign up” were “yes”, “no” and “not sure”.

Binary response formats (eg, “yes/no” or “agree/disagree”) were used for selected knowledge items to assess basic awareness and factual understanding of LBD, consistent with established dementia knowledge surveys.^21,22 Likert-scale responses were used where appropriate to capture attitudinal constructs, and open-ended questions were included to allow respondents to elaborate, providing additional qualitative context. This mixed-response format was chosen to balance simplicity and clarity with the need to explore knowledge gaps and perceived practices in an initial, exploratory survey.

Sampling Strategy

Sampling followed a non-probability, opportunistic recruitment strategy, supplemented by snowball dissemination. In Ireland, private and public LTC facilities (or “nursing homes”) employ approximately 30,000 staff across clinical and support roles and there is no national registry or sampling frame from which individual staff members can be randomly selected.²⁴ Consequently, LTC facilities and staff were approached through professional networks, Email circulation, social media dissemination, and in-person engagement within LTC facilities, using snowballing techniques.

Prior to distribution, the survey underwent a pilot phase with n=13 respondents and was revised based on feedback before wider distribution. This process allowed us to assess face validity, internal consistency, and completion time. Data from the pilot study were included in the final analysis as responses were consistent with the overall dataset, and it was considered appropriate to maximise the sample size.

The survey was disseminated between March and July 2024. Participation was voluntary, and respondents were encouraged to share the survey with colleagues to maximise reach across professional roles, regions, and facility types. This approach was considered appropriate for an exploratory workforce survey aiming to capture a broad range of perspectives rather than to generate a statistically representative sample.

All grades of LTC staff were eligible to participate, provided they were aged 18 years or older and currently employed in an Irish LTC facility. Participants could be based in any region of the Republic of Ireland.

A formal a priori sample size calculation was not undertaken, as the study was designed as an exploratory, descriptive survey rather than a hypothesis-testing study with predefined effect sizes. The primary aim was to establish a baseline understanding of knowledge, attitudes, and perceived practices related to LBD among LTC staff, an area where empirical evidence is limited. The final sample size (n = 181) reflects voluntary participation over the study period and is comparable to, or exceeds, sample sizes reported in similar KAP studies conducted in LTC settings internationally.

Ethical approval for this study was granted by the Research Ethics Committee of the Centre for Health Policy and Management, Trinity College Dublin on 29/02/2024. Prior to participation, all respondents were required to provide informed consent by completing a consent form. Participants were also provided with an information sheet outlining the purpose of the study, the voluntary nature of participation, and the confidentiality measures in place to protect their privacy and data.

Data Analysis

To analyse the extent of dementia (and LBD) knowledge amongst survey respondents, we first generated descriptive statistics on a range of survey items capturing knowledge and awareness. In addition to these individual survey items, we also generated a composite knowledge score, which measured respondents’ knowledge of dementia in general. This composite knowledge score was generated based on responses to a series of questions within the knowledge section of the questionnaire. Specifically, the composite score captured whether participants believe dementia and Alzheimer’s are interchangeable terms; whether staff members understood that there are different types of dementia other than Alzheimer’s, whether respondents could name more than one type of dementia, and an LBD knowledge score based on the number of LBD symptoms that the participant was able to identify. This composite knowledge score ranged from 1–15. For continuous variables, we report mean and standard deviation, while categorical variables are summarised using frequencies and percentages.

In addition, we examine differences in mean composite knowledge scores, by age, gender, education and job role. We also test whether these differences are statistically significant using analysis of variance (ANOVA) tests. Finally, we ran a multivariable linear regression model to explore the factors associated with the composite knowledge score, controlling for age, gender, education and job role. Analysis was conducted using StataNow/SE 18.5.

Results

Participants

Overall, 225 LTC staff took part in the survey, with 181 participants fully completing the survey. Of these respondents, 69.9% were female, and most were healthcare assistants (HCAs) followed by ADONs and DONs. See Table 1 for participant demographics.

Table 1 Respondent Demographics

Knowledge and Awareness

Table 2 presents the Descriptive Statistics on Knowledge and Attitude Variables. When asked, 42.6% of respondents could not name more than one type of dementia other than AD, 37.67% could name two or more types, and 19.73% did not answer. The most frequent dementia named was vascular dementia (n=131), followed by LBD (n=87). 6.73% of respondents disagreed with the statement “I have heard of LBD before”. 34.98% of participants indicated that they had received LBD training before, while 75.34% of staff were willing to complete additional LBD training.

Table 2 Descriptive Statistics on Knowledge and Attitude Variables

Table 3 presents the mean composite knowledge score (7.94) and highlights the distribution of the knowledge scores across various job roles, age ranges, education level and gender. There was considerable variation in mean composite knowledge scores across job roles, with ADONs and DONs achieving the highest mean scores (9.68), followed closely by activity coordinators (9.38). In contrast, the lowest scores were observed among domestic assistants (5). Healthcare assistants and administrative staff had similar results, with scores of 6.94 and 6.9 respectively. There was minimal variation in composite knowledge scores with other demographic variables such as age range and education level. Those who had completed a masters or PhD had the highest mean composite knowledge score at 8.89. In comparison, those who had completed some post-secondary school training but had no degree had the lowest mean knowledge score of 6.68. The respondents whose highest level of education was up to the leaving certificate, or equivalent, had a mean composite knowledge score of 7.39. In terms of age range, the mean composite knowledge scores ranged from 6.72 for the 65+ age group, to 8.47 for the 35–44 group.

Table 3 Descriptive Statistics for Composite Knowledge Score, by Age, Gender, Education and Job Role

In Table 4, an ANOVA was first performed to examine whether differences in composite scores by age were statistically significant. The ANOVA reveals that there were no statistically significant differences by age. This test was repeated for gender, education and job role and a statistically significant difference was found. Table 5 presents the multivariable linear regression which was run controlling for age, gender, education and job role. Holding all else constant, we find that job role was the only statistically significant factor associated with knowledge. Specifically, we find that relative to (A)DONs, administrative staff on average score 3.18 lower on the composite knowledge score, while domestic staff on average score 4.49 lower. Healthcare assistants and staff nurses also score significantly lower (−2.24 and −2.10 respectively). We do not find a statistically significant difference in knowledge between (A)DON and those responsible for delivering activities in the nursing home. However, this is likely driven by the small number of respondents in the activity category.

Table 4 ANOVA for Composite Knowledge Score, by Age, Education, Job Role and Gender

Table 5 Multivariable Linear Regression Analysis of Composite Knowledge Score

A proportion of survey items were left unanswered. The percentage of missing responses varied across questions, and these were retained in the analysis to provide transparency and because variable non-response may reflect areas of uncertainty or limited knowledge among respondents rather than random omission.

Discussion

To our knowledge, this is the first study to examine knowledge, attitudes, and perceived practices relating specifically to LBD among LTC staff in Ireland, and one of the first to do so internationally. In a context where LBD is frequently under-recognised, misdiagnosed, and rarely included in formal training curricula, establishing a descriptive baseline is a critical and necessary contribution.

By systematically identifying gaps in knowledge and confidence across professional roles, this study provides foundational evidence to guide targeted education, workforce development, and the design of future hypothesis-driven and interventional research aimed at improving LBD care in LTC settings. The findings reveal significant deficits in understanding of the condition, particularly among key frontline roles, particularly healthcare assistants and non-clinical staff, and underscore the urgent need for structured training and support. These findings raise concerns about the capacity of care teams to recognise and appropriately respond to LBD symptoms, with direct implications for resident safety, quality of care, and staff preparedness.

Although this study is descriptive, it establishes the scope of the problem, highlights priority areas for intervention, and provides a clear rationale for future studies using validated instruments and advanced analytic approaches to examine predictors of knowledge and attitudes.

The findings indicate that most staff could not name more than one type of dementia beyond AD, with vascular dementia being the most commonly answered. Interestingly, even though LBD was referenced earlier in the survey, it was less frequently identified. This suggests a gap in knowledge regarding LBD, however it could also reflect language barriers among non-national staff, who now make up a large proportion of the workforce. In 2024, over half of practicing nurses in Ireland trained abroad.²⁵ Such barriers could make it more difficult to fully understand or retain information in the survey.

There was minimal variation in the mean composite knowledge score across age groups and education levels. As expected, respondents with a master’s or PhD degree achieved the highest mean composite knowledge scores (8.89), followed by those with a bachelor’s degree (8.27). Interestingly, participants whose highest education level was the Leaving Certificate (or equivalent) scored higher than those who had completed additional training or certificates with scores of 7.39 and 6.68 respectively. This unexpected finding may be influenced by the smaller sample size of the Leaving Certificate group (n = 18) compared with the additional training group (n = 41), or it could be due to the quality or content of the additional training completed being non dementia-specific. This could be encouraging news for nursing homes, as it suggests that higher formal education does not automatically equate to greater knowledge of LBD. For roles where advanced qualifications are not required—such as healthcare assistants, activity coordinators, domestic staff, or receptionists—there is an opportunity to enhance knowledge through targeted training. This indicates that well-designed training programs could meaningfully improve LBD understanding across all staff levels.

The study found that while DONS, ADONS and activity coordinators demonstrated comparatively higher levels of knowledge and confidence in managing LBD in comparison to HCAs and non-clinical personnel. Multivariable regression analysis indicated that job role was independently associated with dementia knowledge. However, given the limited number of covariates included in the model, these findings should be interpreted cautiously due to the potential for omitted variable bias. Nonetheless, the results suggest that job role is an important factor associated with LBD-related knowledge in LTC settings. This disparity may reflect differences in training opportunities, professional qualifications, or exposure to dementia-specific education. Moreover, it suggests that those in leadership and engagement-focused roles are more likely to access or seek out specialist knowledge, while frontline caregivers—despite providing the bulk of direct resident care—may lack the tools needed to identify or respond to the fluctuating and multifaceted symptoms of LBD.

These results are consistent with international literature. Armstrong et al²⁶ reported that family caregivers in the United States perceived healthcare providers—including nurses and physicians—as having insufficient understanding of LBD. Caregivers described a lack of preparedness and inconsistent recognition of key symptoms, contributing to delays in diagnosis and inappropriate management. Similar concerns were echoed in the UK by Jackson et al,¹⁵ whose mixed-methods study of care home staff found that low awareness of symptom patterns, especially hallucinations, delusions, and cognitive fluctuations, hampered effective care Staff reported that existing training was not tailored to the specific challenges of LBD and expressed uncertainty in how to support residents experiencing distressing symptoms. These parallels underscore the widespread LBD-related knowledge gaps in LTC settings across diverse healthcare systems.

In the current study, participants’ limited awareness of critical clinical features—such as antipsychotic sensitivity, REM sleep behaviour disorder, and parkinsonian motor symptoms—is particularly concerning. Mismanagement of these symptoms can have severe consequences, including increased morbidity and adverse drug reactions. The finding that 8% of participants had never heard of LBD highlights the urgency of embedding LBD education into routine staff training, particularly for those in high-contact, task-oriented roles such as HCAs.

Importantly, the study also found that nearly all respondents expressed a strong interest in receiving additional LBD-specific training. This mirrors findings from Strøm et al,²⁷ who interviewed nursing staff in Indian LTC facilities and found that participants were eager to receive further training on dementia care, explicitly linking knowledge acquisition with improved confidence, empathy, and quality of care One participant in that study stated, “if we know more about the condition, then I think we’ll be able to understand them better and care for them in a better way”.

The relatively high knowledge scores among activity coordinators also warrant further reflection. Despite the small sample size (n=8), this group consistently scored higher than other job roles. This may be due to the nature of their work, which often involves close interaction with residents in a socially engaging context, allowing for more nuanced observation of behavioural and cognitive changes. Alternatively, it may suggest that individuals who choose to work in activity-based roles are particularly motivated to understand dementia more deeply. These insights highlight the potential value of interdisciplinary training approaches, where staff in different roles share practical strategies for caring for challenging dementia behaviour.

The implications of these findings are far-reaching. Targeted, role-relevant training is needed to close knowledge gaps in LBD, with a focus on early symptom recognition, safe management of neuropsychiatric features, and pharmacological sensitivities. Embedding this education into induction and ongoing professional development would reinforce core competencies. Interdisciplinary collaboration should be a cornerstone of this approach. Structured team-based training sessions—bringing together nurses, HCAs, activity coordinators, and non-clinical staff—could foster a shared understanding of LBD along with improving communication and team work.

Limitations

Several limitations should be considered when interpreting the findings of this study. First, the voluntary nature of survey participation introduces the potential for self-selection bias. Staff members with a pre-existing interest in dementia or those already more knowledgeable may have been more inclined to respond. The survey was primarily distributed via LinkedIn and through formal communication channels within nursing homes, which may have disproportionately reached senior staff or those with greater digital access and engagement.

This study is limited by its descriptive design, which does not permit causal inference or hypothesis testing. However, in the context of LBD, descriptive data are an essential first step in establishing baseline knowledge, attitudes, and perceived training needs among LTC staff. As the first national survey to focus specifically on LBD in Irish LTC settings, these findings identify critical gaps in awareness and confidence and provide an empirical foundation to inform the development and evaluation of future targeted educational interventions.

A limitation of this study is the presence of unanswered survey items, which varied between questions. While these may reflect respondent uncertainty or gaps in knowledge, they also introduce the possibility of non-response bias and should be considered when interpreting the findings.

An additional limitation was that the sample was overrepresented by DONs and ADONs relative to HCAs, despite the latter constituting the largest segment of the LTC workforce. This imbalance may have skewed overall knowledge scores and limited the generalisability of the findings to frontline caregiving roles. Similarly, while activity coordinators performed well in the knowledge assessment, their numbers were too small to draw definitive conclusions about this group’s training needs or perspectives.

A small number of responses appeared internally inconsistent, suggesting that some participants may have misunderstood items or completed the survey with limited attention. Disparities in knowledge may also reflect unmeasured factors such as language barriers, location of training, or length of time in role, which were not captured in the survey demographics. These data limitations could impact the reliability and validity of the results.

The multivariable regression analysis was limited by the small number of covariates available, increasing the potential for omitted variable bias and warranting cautious interpretation of observed associations.

Finally, the relatively modest sample size, and limited geographic and institutional diversity further constrain the generalisability of the findings. Larger-scale studies across a broader range of facilities are needed to confirm these patterns and inform national-level policy or training strategies.

Conclusions

This study identified critical gaps in knowledge and understanding of Lewy body dementia among staff working in Irish long-term care facilities. While overall knowledge levels were moderate, a significant disparity exists across job roles, with HCAs and non-clinical staff demonstrating lower levels of awareness compared to DONs, ADONs, and activity coordinators. These findings reflect international trends and underscore the ongoing challenges faced by care teams in recognising and managing the distinct features of LBD.

The strong interest expressed by staff in receiving further training offers an opportunity to enhance care quality through targeted educational initiatives. These should be role-specific, practical, and embedded within broader dementia training frameworks, ensuring LBD becomes a core competency for all staff involved in dementia care. Interdisciplinary training and knowledge-sharing across job roles may further enhance team cohesion and improve the early identification and management of LBD symptoms.

Ultimately, improving LBD literacy among LTC staff is not simply an educational goal—it is an ethical imperative. Residents with LBD deserve care that is informed, dignified, and responsive to their unique needs. Equipping care home staff with the appropriate knowledge and tools is essential to achieving that standard.