For the millions of people around the globe living with Lewy body dementia (LBD) — whether in the form of dementia with Lewy bodies (DLB) or Parkinson's disease dementia (PDD) — and for the family members and care partners who support them, one of the most persistent frustrations is how little the people around them seem to know about the disease.
A new study published in the Journal of Multidisciplinary Healthcare asked a pointed question: how much do the people working in long-term care (LTC) facilities — the nursing homes and residential care communities where people live and receive around-the-clock support — actually know about LBD? The findings highlighted substantial gaps in awareness. Among 181 staff members surveyed across LTC facilities in Ireland, nearly one in ten had never heard of LBD at all.
Let that number settle for a moment. LBD is the second most common form of neurodegenerative dementia in the world, trailing only Alzheimer's disease. It causes a complex constellation of symptoms — fluctuating cognition, visual hallucinations, movement problems, and serious sleep disturbances — that make it particularly challenging to manage and care for. People with LBD are also at significantly higher risk of being admitted to a long-term care facility than people with other dementias. These are settings where strong LBD knowledge is especially important. And yet, for a meaningful portion of the staff who work in them, the disease didn't register at all.
The study, led by Iracema Leroi and colleagues at Trinity College Dublin and the University of Galway, surveyed staff across all job roles — from directors of nursing to healthcare assistants to domestic and administrative workers. They measured knowledge using a composite score that assessed whether staff understood that dementia has different subtypes, whether they could name more than one type beyond Alzheimer's, and how well they recognized the symptoms of LBD specifically. The results revealed a clear and consistent pattern: knowledge varied sharply depending on a person's role. Directors of nursing and assistant directors scored highest. Domestic staff scored lowest, nearly five points below on a 15-point scale. Healthcare assistants — who often provide the most direct, hands-on care to residents — fell closer to the bottom than the top.
This gap matters in ways that are both practical and serious. LBD carries unique clinical risks that require specific knowledge to manage. People with LBD are highly sensitive to a class of medications called antipsychotics, which are sometimes used to manage behavioral symptoms in dementia; in LBD, these drugs can cause severe and life-threatening reactions. Without awareness of LBD, staff may be less prepared to recognize important risks, communicate concerns to clinical teams, or support safe, informed care. The same applies to recognizing when cognitive fluctuations — a hallmark of LBD that can look like anything from drowsiness to confusion to a sudden change in alertness — are symptoms of the disease rather than signs of something else entirely.
There is, however, a reason for hope embedded in these findings. When asked whether they would sign up for specialized LBD training if it were offered, more than 75% of respondents said yes. The high level of interest in additional training is encouraging.
The authors argue that the solution is not simply more training, but smarter training: role-specific, practical, and integrated into the professional development structures that already exist for LTC staff. They also point to the value of interdisciplinary approaches, where nurses, care assistants, activity coordinators, and non-clinical staff learn together, sharing both knowledge and the practical strategies that help translate that knowledge into better care.
Some important caveats are worth noting. This study was conducted in Ireland, with a relatively modest sample of 181 fully completed surveys. The survey relied on voluntary participation, which means staff who were already more knowledgeable or more interested in dementia care may have been more likely to respond. The sample also overrepresented senior nursing staff, which may have pulled the overall knowledge scores upward. These limitations mean the findings should be interpreted with caution.
That said, Ireland is not alone. Similar knowledge gaps have been documented in the United Kingdom and elsewhere around the world, and the researchers note that LBD remains underrecognized in long-term care settings across diverse healthcare systems globally. LBD does not stop at borders, and neither does the challenge of preparing those who care for people living with it. More research will be needed — particularly in the United States, where the LTC workforce is large, geographically diverse, and reaches millions of people with dementia — to understand the full scope of the problem and identify what kinds of training work best.
What this study gives researchers is a starting point: a clear, documented baseline that names the problem and points toward solutions. For the LBD community — people living with the disease and care partners — it is a validation of what many already know from experience.
LBDA works to bridge these gaps. For healthcare providers, LBDA offers a host of educational tools, from continuing education courses to the DIAMOND LewyTM Management Toolkit. You can also advocate for yourself with your healthcare providers, and LBDA offers numerous tools and resources that you can use yourself and share with your medical team, such as the Comprehensive Symptom Checklist and the Medical Alert Wallet Card. You can find these and other resources here.
Awareness of LBD is an important goal — a goal with implications for care and treatment today. Research that maps where the gaps are, and what it would take to fill them, is an essential part of building a care system that is genuinely prepared to meet the needs of people living with this disease.
Reference
Keane O, Fitzpatrick RL, Walsh S, Connelly J, Leroi I. 2026. Exploring Knowledge and Awareness of Lewy Body Dementia Among Staff in Long-Term Care Facilities. J Multidiscip Healthc. 19:578782
https://doi.org/10.2147/JMDH.S578782
