A Relationship That Weathered 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.

One of the most compelling accounts of sustaining a relationship with a loved one with dementia has just come from Susan Schneider Williams, wife of the late comedian Robin Williams. In her open letter to the American Academy of Neurology in its journal Neurology, Schneider Williams takes the reader—and hopefully many neurologists—through a detailed account of the period before her husband’s death. She tells the story of Robin Williams’ journey with what she describes as a “terrorist inside (his) brain.” Even though Robin had almost all of the known symptoms of Lewy Body disease, the Williams family was given only a diagnosis of mild Parkinson's disease.

Lewy Body disease (LBD) is now thought to be the second leading cause of dementia after Alzheimer’s disease. However, it’s one many Americans have not heard of before. Lewy Body dementia (LBD), which is thought to affect 1.5 million Americans, is similar to Alzheimer’s disease in terms of damage to the brain, but its symptoms can be very different. Unlike with Alzheimer’s disease, the cognition of persons with LBD can fluctuate from one moment to the next, meaning a person can complete a task one minute and have much more difficulty with it five minutes later. This fluctuation can be mistaken for apathy or disinterest and can lead to an underestimation of a person’s need for support.

LBD, which can be considered to be on a spectrum with Parkinson’s disease, can also come with all of the recognizable physical symptoms of Parkinson’s. In the case of Robin Williams, these came later in the trajectory after many of the behavioral and psychiatric symptoms. Schneider Williams does a textbook-worthy job of describing every symptom and treatment the couple experienced. The essay may break your heart. It will certainly teach you about LBD.

Especially interesting is when Schneider Williams writes eloquently of the connectedness and love she and Robin Williams shared and how their consistent daily pattern of supporting and listening to each other helped as he was facing the most frightening aspects of the disease. These were the fear, the paranoia, the hallucinations, which he feared telling anyone about. She writes, “When LBD began sending a firestorm of symptoms our way, this foundation of friendship and love was our armor.”

In her vivid description of their day-to-day interactions we see the singular and stellar importance that love and their relationship had in their weathering LBD. It is precisely this type of partnership and love that is needed to shield against the symptoms of any type of dementia. So why then do so many report having a sense of abandonment and isolation after diagnosis?

Maintaining social relationships with friends and family can be seen as one elixir in the landscape of dementia, for which there are so few treatment tools. However, many diagnosed with the disease will tell you it is far from the reality they have experienced post-diagnosis. Friends stop calling, social groups lack the awareness to accept, and workplaces are less than accommodating. We need to do better. As an actor whose best roles were as a physician, perhaps Robin Williams’ legacy can be that of a prescription that makes all of us want to do better. Perhaps if we had done better, Robin Williams might still be around to show us how to…embrace, understand, connect, and continue to love.

Lewy Body Dementia Awareness Day is October 22, 2016. To learn more, visit the Lewy Body Dementia Association’s website.