SPARK Screening Sheds Light on Often-Undiagnosed Disease: Lewy Body Dementia
June 15, 2021
In the 2 years preceding Robins Williams’s death, Robin and Susan Schneider Williams searched for answers about the inexplicable changes Robin was experiencing. Tragically, the unknown enemy that had plagued their life came in a coroner’s report months after Robin’s death: Lewy body dementia (LBD).
SPARK, Robin Williams and His Battle with Lewy Body Dementia is a 45-minute documentary offered by the Lewy Body Dementia Association (LBDA). The film, funded by LBDA with support from a grant from Acadia Pharmaceuticals, Inc, focuses on the personal journey Robin and Susan traveled before his death to provide raw insight into this often misunderstood and misdiagnosed disease.
On Wednesday, June 30, FCA will host a free SPARK screening and panel discussion featuring Bruce L. Miller, MD (Director, Memory and Aging Center, University of California, San Francisco), and Robin Riddle (Board Member and CEO of Brain Support Network).
We spoke with LBDA executive director Todd Graham to learn how the film is contributing to greater understanding, detection, diagnosis, and quality care management of LBD.
Why is it important to raise awareness about Lewy body dementia?
Lewy body dementia is not curable, but you can manage symptoms and continue living a productive life, especially with an early diagnosis. While it’s primarily diagnosed at the specialist level, unfortunately it’s difficult to diagnose and not commonly recognized by the medical community.
A person with LBD will have good days and bad days, so while one family member may notice something wrong with mom, someone else will say, ‘I don’t know what you’re talking about, mom is fine.’
People who suffer from LBD remain aware that something is not right, and lack of proper diagnosis can add to their frustration.
What are common signs of Lewy body dementia and how is it diagnosed?
It’s a fluctuating disease. Generally, Alzheimer’s is a gradual downhill slide, but LBD can be up and down. It may be misdiagnosed as Alzheimer’s or dementia, or it can start out looking like Parkinson’s, affecting motor function and movement.
Most cases include REM sleep disorders, hallucinations, and delusions. The range of symptoms can be very challenging for caregivers, especially without a clear diagnosis.
Patients need to advocate for themselves when a diagnosis doesn’t feel right, when time wears on and they notice new symptoms that don’t make sense, or the drug they’re taking isn’t helping.
That’s one of reasons we created the LBDA Research Centers of Excellence program, which has 26 research centers around the country that are much more in tune with diagnosing LBD, caring for those with LBD, and providing support and education.
How does Lewy body dementia impact caregivers and what support does LBDA offer?
One of the biggest things about caregiving for people with LBD is the fluctuation of symptoms. If a person is suffering from REM sleep disorders, they may act out dreams in the middle of the night, and if your partner is not sleeping then you’re not sleeping either.
One day may be up, and another day is down—really down. It can be overwhelming, and involuntary movement, incontinence, or other symptoms may present additional challenges on top of what it would be if it was just dementia or Parkinson’s.
Lewy body dementia represents a whole different dimension of caregiving. LBDA offers support through our research centers, online LBD resources, a diagnostic symptoms checklist, Facebook support groups, a support and advice line, and more. The best place to go is to LBDA.org, which is the comprehensive Lewy body dementia resource.
What reception has SPARK received from caregivers and people suffering with the disease?
A number of people living with LBD have thanked us for offering the film. It gives them the opportunity to show family members what their disease is and what it could be.
One man who has had LBD for 6 or 7 years said, “Even today some members of my family don’t think I’m sick and think I’m faking it.” He was very moved by the film. Others who have watched the film have told us, “You get me.”
For a full list of FCA’s upcoming classes, webinars and events, visit the Events section of our site.