The Dementia, Mental Health and Neurodegeneration Research Theme held a PPIE workshop to review the pilot version of the Lewy Body Dementia Domain Rating Scale, a disease-specific outcome measure.

About the workshop

The Lewy Body Dementia Domain Rating Scale workshop was facilitated on 24 September 2025 by Abby Price, Dr Adelina Muzenda, Dr Alison Killen, Carein Todd, Claire Airey, Nicola Brown, Professor John-Paul Taylor and members of the Patient and Public Involvement and Engagement (PPIE) group. 14 PPIE participants attended, including 4 people living with LBD, 7 current carers, and 3 former carers. This variety ensured an assortment of valuable feedback.

The current version of the scale is organised into five core symptom domains:

1. Cognitive
2. Neuropsychiatric
3. Motor
4. Autonomic/Somatic
5. Sleep/Wake

Each of these domains is comprised of an assessment of individual symptom severity as well as a global assessment of the impact of the domain severity on function.
In addition to these five areas, the scale also includes a sixth domain focused on activities of daily living. This section captures how well someone can manage essential everyday tasks and also considers the broader impact on both the patient and their caregiver.

Facilitating the activities

The activities were organised across 3 tables each with 3 or 4 PPIE members and one member of staff to facilitate the activity. The scale contained one of the 6 domains described above and the groups were given 4 activities, an example of which was to ask if the group members agreed with the inclusion of all the domains. To ensure maximum participation by all members of the group some responses were recorded in the form of post-it notes throughout and as the photo depicts were organised accordingly on a wall display. There were other ways to express thoughts and opinions throughout using markers placed on feedback sheets. These sheets might have a yes or no or faces ranging from smiles to a frown or ticks and crosses.

Feedback and results

Participants endorsed the need for a Lewy Body Disease specific scale and the inclusion of all five symptom domains, while suggesting additional features for consideration, including ‘misidentification of familiar people, anger and personality change, and loss of smell’. Carers highlighted how the use of language is perceived. For example, they expressed a clear preference for the term ‘impact’ over ‘burden’ in the activities of daily living domain and for separate patient and carer interviews. There was strong support for a staging system, frequently compared to cancer staging, with most participants indicating they would wish to be informed of their (or their relative's) score and stage as part of the clinical conversation.

The PPIE group also shared several reasons for supporting the development of this scale. Their insights highlight how valuable a tailored tool can be for people living with Lewy body dementia (LBD) and those who care for them. Key motivations included:

• Preparing for future changes — having a structured way to monitor symptoms helps families anticipate and adapt as the condition evolves.
• Tracking progression — the scale offers a practical way for individuals with LBD and their families to follow how symptoms shift over time.
• Distinguishing LBD symptoms from normal ageing — many symptoms can be confusing or subtle, and a dedicated tool helps clarify what is related to LBD.
• Noticing changes after treatment — consistent tracking makes it easier to spot improvements or new concerns once therapies are introduced.
• Addressing the lack of LBD‑specific tools — current assessments often rely on scales designed for other conditions, such as Alzheimer’s disease, which may not capture the unique features of LBD.

This feedback will guide the next phase of refinement, ensuring the scale continues to evolve with meaningful input from both patients and care partners.