Table 3 Summary of key themes and perspectives on the LBD care pathway

1. Recognition and diagnosis

Early symptoms are often overlooked or misattributed, leading to delayed and emotionally challenging diagnoses

Early signs dismissed as aging, stress, or other conditions; long, confusing diagnostic journeys; emotional impact of delayed recognition and misdiagnosis

Difficulty distinguishing LBD from other conditions; limited awareness and diagnostic confidence; need for targeted training and clearer referral protocols

2. Systemic fragmentation and informal anchors

Post-diagnosis support is fragmented, with families relying on informal networks and individual professionals to fill gaps

Lack of structured follow-up; confusion about roles and referral pathways; reliance on charities, voluntary organisations, and individual clinicians for support

Frustration with system limitations; value of informal anchors; challenges in communication and coordination across services; administrative barriers

3. Emotional and practical burden of care

Both groups experience significant emotional and practical challenges, with care partners facing high stress and professionals constrained by limited resources

Chronic stress, burnout, financial strain, and social isolation; need for more support and recognition of carer burden; difficulties accessing financial and practical resources

Limited resources and time; frustration at being unable to provide adequate support; increased demand without increased resources; systemic constraints

4. Inequitable access and training gaps

Disparities in access to care and knowledge gaps hinder optimal support, especially for rural and younger individuals

Barriers due to rural location or young onset; lack of tailored supports; difficulties accessing appropriate services; feelings of exclusion and isolation

Need for more LBD-specific training; inconsistent expertise and professional development; recognition of system-wide inequities and patchy service provision

5. Call for awareness and structural change

Participants called for system‑level reforms, including clearer national pathways and specialist, multidisciplinary models, to provide more consistent and responsive LBD care

Desire for clear, national diagnostic and referral pathways; better follow‑up and clarity about available interventions; hope for more structured, predictable and equitable LBD services

Advocacy for standardised national guidelines and referral routes; recognition of the value of specialist roles (e.g. nurse specialists, coordinators) and multidisciplinary clinics; ongoing but incomplete progress through education and service development initiatives