Lewy Body disorders (LBD) comprise Dementia with Lewy Bodies (DLB) and Parkinson’s Disease Dementia (PDD). Combined, they represent the second most common forms of dementia in people 65 years and older. DLB and PDD have historically been under-diagnosed and under-detected, particularly in Ireland. Advances in neuronal staining techniques in the 1980s revealed 10-15% of cases of dementia in older people had LBD. Based on global statistics, there are an estimated 7,000-10,000 people with LBD in Ireland where there are no specific support services or dedicated information portals. There is an urgent need to generate and distribute knowledge through Lewy Body Ireland (LBI) among professionals and lay stakeholders providing support and improving diagnostic outcomes.
Angela Taylor, founder of Lewy Body Dementia Symptoms, Diagnosis, and Treatment (LBDA) built a website in 2002. That year, of the 3.4 million people diagnosed with dementia, approximately 15% or 510,000 people had LBD. In 2020, 1.4 million people in the United States (USA) were diagnosed with LBD or 22% of the 6.4 million people living with dementia. While dementia detection rates overall have almost doubled in the last twenty years, the detection rate for LBD has almost tripled in that time, evidence that the provision of a world-class website has improved Lewy Body disorders diagnosis and with ongoing research has improved the treatment and care for patients in the USA.
We are building a website, producing information leaflets, and creating an awareness campaign to raise the profile of LBD in Ireland. Lewy Body Ireland will work closely with LBDA, The Lewy Body Society UK, patients living with LBD, and their care partners to evaluate patient services and gaps in care. There will be five strands to this website to facilitate the following groups:
- The person living with LBD or thinks they may have this disease
- The care partner or family member who is concerned about a relative
- Dementia-inclusive creative artists to inspire optimism and provide hope after diagnosis.
The aims are to co-develop the website as an information/resource and community-building portal for people with Dementia with Lewy Bodies and their families, to evaluate the feasibility of the website using a variety of metrics, and to develop long-term sustainability by putting a funding model in place and applying for registered charity status in Ireland.