Understanding Lewy Body Dementia

About Juliet Holt Klinger

Senior Director of Dementia Care

Juliet is a passionate advocate for people living with dementia and their families. She is deeply committed to improving the cultural acceptance of those with cognitive differences. As our gerontologist and Senior Director of Dementia Care, Juliet develops person-centered care and programming for Brookdale’s dementia care communities. But if you ask her, Juliet says she continues to learn every day from the true experts, those living with dementia and their care partners. Juliet believes we need to move beyond the concept of caregiving, which implies a one-sided relationship, and embrace the idea of care partnering. Care partnering is about relationships built on cooperation—a two-way street promoting person-centered care and mutual feelings of purpose, where the person living with dementia also plays a strong role in shaping their care and daily routine. We are here to partner, learn and grow with our residents and families to make aging a better experience. After volunteering in nursing homes in high school, Juliet knew she wanted to work with older adults. While working on her bachelor’s degree in social work at the University of Iowa, she completed an Aging Studies Certificate program, before there were formal gerontology programs available. At Iowa, Juliet also had the chance to study with pioneers in the field of dementia care, an opportunity that shaped her passion for caring for those living with dementia. Trained as a gerontologist, with a master’s degree from the University of Northern Colorado, Juliet joined Brookdale in 2004. She is a seasoned senior living executive with more than 30 years of experience designing and executing innovative Alzheimer's and dementia care programs and living environments in both assisted living and skilled settings.

Cognitive decline is so commonly referred to as Alzheimer’s disease, that I suspect that many people don’t realize it’s just one type of dementia. Because the symptoms of various forms of dementia are so similar, it can be very difficult to arrive at an accurate diagnosis. One such form of dementia is Lewy Body dementia (LBD).

October is Lewy Body Dementia Awareness Month, so I want to raise awareness for a disease that affects an estimated 1.4 million people in the United States. Lewy Body dementia is under-recognized, under-diagnosed, and under-treated.

According to the Lewy Body Dementia Association, LBD is the second most common but the most common misdiagnosed form of dementia. Lewy Body dementia, which is an umbrella term for two related diagnoses: Parkinson’s disease dementia and dementia with Lewy Bodies. The earliest symptoms of these two diseases differ, but reflect the same underlying biological changes in the brain; eventually people with both diagnoses will develop very similar cognitive, physical, sleep and behavioral symptoms. General symptoms include:

Changes in thinking and reasoning
Difficulty with complex tasks like grocery shopping
Confusion and alertness that can vary significantly from one hour or day to the next
Hallucinations and delusions
Difficulty navigating or perceiving distances
Memory loss, though not as apparent in those with Alzheimer's

Although never given a diagnosis while he was alive, Robin Williams had almost all of the signs of LBD. His wife, Susan Schneider Williams, penned a powerful letter to the American Academy of Neurology about their struggles. You can read my blog on her powerful words here.

To complicate matters, some people have mixed dementia, namely, changes in the brain resulting from two or three of the following sub-types: Alzheimer's disease, vascular dementia or LBD. You can learn more about these forms of dementia here. Given the many types of dementia, I encourage you to advocate for the best diagnostic work-up possible and ask for a referral to a neurologist who specializes in dementia. Even a primary care physician with the best of intentions may not be well informed about LBD, let alone less common forms of dementia. Educate yourself and use resources like the Lewy Body Dementia Association or the Alzheimer’s Association for help when needed.