Lewy body dementia strikes 1.3 million Americans and is unknown to most primary care physicians, according to a recent report by the Lewy Body Dementia Association.
Nearly 80% of people with Lewy body dementia (LBD) received a diagnosis for a different cognitive, movement, or psychiatric disorder before ultimately learning they had LBD, according to the Lewy Body Dementia Association’s report, Caregiver Burden in Lewy Body Dementias. [3/31/2018: Link broken] LBD, the second-most common form of dementia in the elderly affects an estimated 1.3 million people in the United States and is most often misdiagnosed as Alzheimer’s or Parkinson’s disease.
“…like trying to manage Alzheimer’s, Parkinson’s, and
a psychiatric disorder rolled into one disease.”
Lewy body dementia is a degenerative brain disease that has been described by LBD family caregivers like trying to manage Alzheimer’s, Parkinson’s, and a psychiatric disorder rolled into one disease. Early and accurate diagnosis of LBD is of critical importance, because people with LBD respond more poorly to certain medications for behavior and movement than people with Alzheimer’s or Parkinson’s; sometimes with dangerous or permanent side effects.
“The general public, including many primary care doctors and nurses,
have never heard of LBD.”
Recognition of LBD as a common form of dementia grew to prominence among neurologists only within the past five years. General awareness of LBD as a disease has yet to make its way to primary care physicians. “Given the growing population of older Americans, at some point in your life LBD will likely affect someone you know,” said Angela Herron, President of LBDA’s Board of Directors. “The general public, including many primary care doctors and nurses, have never heard of LBD. So in addition to trying to manage a very difficult disease, LBD families find themselves in the unanticipated role of educator and advocate.”
LBD symptoms include dementia plus any combination of:
- unpredictable levels of cognitive abilities, attention and alertness,
- changes in movement or gait,
- visual hallucinations,
- a sleep disorder where people physically act out dreams, and
- severe medication sensitivities.
The severe medication sensitivities in LBD make it a very difficult disease to treat without worsening already problematic LBD symptoms.
Quick facts about LBD
- LBD is more common in men than women.
- People with LBD are more functionally impaired than people with Alzheimer’s disease with similar cognitive test scores.
- There is a shorter disease course in LBD to both long term care admission and death than in Alzheimer’s disease.
- People with LBD may respond more favorably to certain dementia medications than people with Alzheimer’s
To learn more about LBD or to help raise awareness the LBDA will celebrate A Week To Remember [Updated 3/31/2018: Link to main website] as LBD families are invited to stand strong with LBDA to raise LBD awareness and support throughout the country. For more information and to learn how you can get involved, click on the link above.
The Lewy Body Dementia Association (LBDA) is the leading voluntary health organization in raising awareness of Lewy body dementias (LBD), supporting patients, their families and caregivers, and promoting scientific advances. LBDA’s Scientific Advisory Council is comprised of leading experts from the United States, the United Kingdom, and Japan in research and clinical management of Lewy body dementias.
