Organisations from eleven countries, including Lewy Body Society in the UK, will collectively celebrate the second annual World Lewy Body Dementia Day on Tuesday, January 28, the 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.

NEARLY UNKNOWN DEMENTIA AFFECTS MILLIONS

Affecting 11 million people worldwide, Lewy body dementia (LBD) is believed to be the most common form of cognitive impairment after Alzheimer’s disease. The number of individuals living with this condition is predicted to increase dramatically as life expectancy increases and diagnostic efficacy improves. Despite the vast number of people lwith the condition, awareness is limited, resulting in millions more who remain undiagnosed and untreated.

LOCAL AND GLOBAL HEALTH CRISES

The impact of LBD is most striking when considering the effect it has on individuals and families. The huge number of people who cannot find long-term care facilities willing or able to accept them because of the psychiatric and physical challenges of the condition also creates a critical public health emergency. Crises in every country mirror those in the UK, where, in 2022, 11,000 people were evicted or refused placement in facilities, ending up in hospitals or in family homes. Data for other countries would be similar. This results in jeopardy for all involved since neither are experienced or staffed to be able to provide the high levels of care required.

“The trauma of the condition cannot be imagined until one experiences it firsthand,” said Jacqui Cannon, CEO of Lewy Body Society, the UK’s only charity solely dedicated to Lewy body dementia and the first in Europe. “We need to transform this trauma with increased awareness and understanding to avoid things spiraling further out of control. Doctors and clinicians need knowledge to effectively diagnose, manage and treat the condition. Facilities need better training to maintain the dignity of residents and the health, safety and well being of staff. Families need insights, education and support to effectively care for individuals in the home. And researchers need the resources to develop treatments and improve diagnostics.”

HIGH COST OF INACTION

The cost of tragically common misdiagnosis is unsustainable in terms of public finance, healthcare, personal suffering, citizen’s health and community impact. The condition is characterised by profound psychiatric symptoms which can become lethal if some medications for similar symptoms in other conditions are used. LBD also comes with the debilitating physical symptoms of Parkinson’s Disease are nearly universal. Collectively, the challenges of the condition frequently lead to hospitalisation as they are far beyond the abilities for nearly all family and in-home care partners.

MAKING A DIFFERENCE

To raise awareness of LBD and in celebration of World Lewy Body Day, we are committed to sharing information with our partners in Lewy Body International, and to expanding its archive of events, supports, research and topical information as a multi-lingual, globally available resource.

“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 Jacqui Cannon, CEO of Lewy Body Society. “World Lewy Body Day helps raise awareness and celebrates the expanding international cooperation to make a difference everywhere. Join our efforts to help achieve the change that is so badly needed.”

HOW YOU CAN HELP

Get involved and help to spread the word about Lewy body dementia on Tuesday, January 28 by adding, commenting on and sharing posts about it on social media; talking to friends and colleagues; and contacting your MP. Getting involved in online and local dementia support groups, and continuing to support Lewy Body Society will all make a difference to those living with LBD.