Healthcare pathways and social experiences of Lewy body dementia and Alzheimer's disease in Ireland.

OBJECTIVE

This study examines how social and healthcare structures in Ireland shape the experiences of individuals diagnosed with Lewy body dementia (LBD) and Alzheimer's disease (AD), with particular attention to diagnostic pathways, care access, and social constructions of dementia.

METHODS

Twenty-three participants with mild to moderate dementia resulting from LBD (n = 12) and AD (n = 11) participated in in-depth interviews between September 2022 and February 2023. Using a descriptive phenomenological approach informed by social constructivist perspectives, interviews were analysed to understand how institutional, geographical, and social factors influence experiences of diagnosis, post-diagnostic support, and public awareness.

RESULTS

Healthcare structures and social understanding of dementia created divergent experiences for individuals with LBD and AD. While AD participants generally encountered established diagnostic pathways aligned with dominant cultural understanding of dementia as memory loss, LBD participants faced structural barriers due to complex symptomatology and limited specialist knowledge. Geographic inequalities in accessing specialised diagnostic services particularly affected rural LBD participants. Post-diagnosis, LBD participants encountered greater institutional barriers in accessing appropriate support, reflecting systemic gaps in service provision. Both groups highlighted how societal misconceptions about dementia shaped their lived experiences, with LBD participants particularly affected by the cultural dominance of the Alzheimer's narrative.

CONCLUSION

This study demonstrates how social structures, healthcare systems, and cultural understandings of dementia create inequitable experiences for individuals with different forms of dementia in Ireland. Findings highlight the need for structural changes in healthcare delivery, increased professional education about LBD, and broader societal awareness to address these disparities.