World Lewy Body Dementia Day, January 28, 2024
World Lewy Body Dementia Day will have its inaugural celebration on January 28, 2024, birthday of renowned neurologist and neuropathologist Dr. Fritz Jacob Heinrich Lewy (1885-1950) for whom the aggregations of misfolded alpha-synuclein proteins in the brain, now known as Lewy Bodies, were named.
WHY IT MATTERS
Despite being one of the least well known form of dementia, Lewy Body Dementia (LBD) is believed to be the most common form of cognitive impairment after Alzheimer’s Disease, affecting 11 million people worldwide. The number of individuals suffering with this condition is predicted to increase dramatically as life expectancy increases and diagnostic efficacy improves.
GLOBAL HEALTH CRISES
The impact of LBD is most striking when considering the effect it has on individuals and families, as well as the critical public health emergency caused by the number of people who cannot access long term care facilities because of the psychiatric and physical challenges of the condition. Countries around the world experience crises similar to those in the UK, where, in 2022, 11,000 people were evicted or refused placement in facilities, and ended up in hospitals or in family homes where care cannot be maintained without causing multiplied crises with medical staff, care partners, spouses and adult children who are completely unable to provide appropriate levels of care.
“For every person affected by LBD, whether directly living with the condition, or as a person involved with their treatment in any way, the trauma and tragedy of the condition cannot be imagined until one experiences it firsthand,” said Timothy Hudson, founder of the first Canadian organization solely dedicated to Lewy Body Dementia. “Doctors and clinicians everywhere need better education and greater awareness to effectively diagnose and manage the condition and to avoid catastrophic outcomes by improper treatment and medication. Facilities need better understanding and training to maintain the dignity of residents and the health, safety and well being of staff. Care partners need education and support to effectively care for individuals in the home. And researchers need the resources to develop treatments and improve diagnostics to avoid things spiralling out of control.”
COSTS OF INACTION
The cost of tragically common misdiagnosis is unsustainable in terms of public finance, healthcare, citizen’s health and community impact. The condition is accompanied by profound psychiatric symptoms including psychoses, while Parkinson’s Disease physical symptoms are nearly universal as well. Collectively, the challenges of the condition frequently lead to hospitalization as they are far beyond the abilities for nearly all family and in-home care partners.
MAKING A DIFFERENCE
In celebration of World Lewy Body Day, and to raise awareness of LBD, Lewy Body Dementia Canada is committed to creating a searchable archive of hundreds of curated and summarized articles as a resource available globally, and regularly added to and maintained at Lewy.ca
“There is a clear and present danger to individuals, families and the community, as well as an immeasurable burden put on public health staff and resources as a result of this condition,” said Lewy.ca founder Timothy Hudson. “World Lewy Body Day is a significant step forward to show the need to apply resources to this pressing issue and will make a profound difference to society.”
HOW YOU CAN HELP
Get involved and help to spread the word about Lewy Body Dementia, and celebrate January 28th’s World Lewy Body Dementia Day by adding, commenting and sharing posts about it on social media; emailing friends and colleagues; and speaking about it openly wherever possible. Getting actively involved in online and local support groups, and supporting your regional LBD groups makes a distinct difference to those living with LBD.
About Lewy Body International
Organizations from ten countries on four continents have formed a cooperative alliance to share knowledge and resources to build awareness, increase understanding and improve outcomes and treatments for all people affected by Lewy Body Dementia. These dedicated groups and individuals are collectively committed to improving the lives of people who live with, or provide care for persons living with LBD. In addition, they are providing education, care partner support, advocacy, community building and outreach to policy makers, the scientific and medical community.
About Lewy Body Dementia Canada
Formed in 2015, it is the first and most comprehensive website on Lewy Body Dementia in Canada. Actively co-administering the two largest online support groups in the world has guided the content of the website to address the most pressing issues faced by caregivers, and those living with Lewy. Hundreds of curated, Lewy-specific articles have been summarized on social media, and we also were the first to produce podcasts on LBD.