Context and gap: Lewy body dementias (LBD, including Parkinson’s dementia and Lewy body dementia) accounts for >20% of the nearly 65,000 people with dementia in Ireland. LBD is ‘the most common form of dementia no-one has heard about’. Fewer than 5% of those affected receive a formal diagnosis. LBD is characterised by cognitive-behavioural and physical changes which significantly impact quality of life and care burden. Knowledge, awareness and support in Ireland for LBD is minimal. Compared to Alzheimer’s, care is more complex, prognosis worse and healthcare costs significantly higher. Specific aims: Guided by PPI contributors and KUs, EMERALD-Lewy will:
(1) address gaps in ‘diagnosing well’ in Ireland by improving the rate and quality of diagnosis and management of LBD.
(2) support ‘living well’ with LBD by better understanding quality of life, daily lived experiences and peer support.
(3) shape policy and practice, and co-design with PPI to improve quality of life by ‘participating and translating knowledge well’.
Approach: The ‘Living Well with Dementia’ framework will shape the 4-year EMERALD-Lewy program:
Workstream 1, ‘Diagnosing well’, will (1) scope and address low diagnosis rates in Ireland, to achieve a ‘good diagnosis’ (timely/accurate/person-centered); (2) investigate novel methods to improve diagnostic accuracy, with international impact.
Workstream 2, ‘Living well’ will: (1) explore ‘quality of life’ in LBD; (2) investigate daily lived experiences in real-time using smartphone apps; (3) develop and evaluate peer support. Workstream 3, ‘Participating and translating knowledge well’, will impact practice/policy by enhancing awareness and knowledge, and meaningfully including PPI throughout..
Methods: Interdisciplinary multiple methods – Implementation science, observational cohorts, real-time data collection/ecological momentary assessment, health services research, quality of life evaluations, Markov modelling, policy economic analysis, and knowledge translation. Impact: We will significantly improve diagnostic rates and quality of care for LBD in Ireland by 2029, aligning with existing policy.
