Robin Williams and Lewy Body Dementia

"One of the doctors said, 'Robin was very aware that he was losing his mind and there was nothing he could do about it.' This was a very unique case and I pray to God that it will shed some light on Lewy bodies for the millions of people and their loved ones who are suffering with it, we didn't know. He didn't know.” - Susan Williams, in People magazine

We all knew Robin Williams. From Mork and Mindy to the Dead Poet's Society and Mrs. Doubtfire, he was both a great dramatic and comedic actor who also invaded our lives with frenetic late night television interviews. He died in an unexpected and sad way. And only then did we find that he suffered from Lewy Body dementia (LBD). After many months, his widow Susan Williams broke her silence to explain how his disease affected both their lives.

Family and friends share the suffering experienced by a patient with dementia. It is difficult to watch as a loved one's mental function slowly, and sometimes rapidly, fails. The person who played catch, attended school plays, and walked down the aisle is replaced by a stranger whose words and actions can be frightening and painful. The body may look the same, but the person inside has changed. And while the patient may not appreciate what changes the dementia has wrought, those who watch the disease progress are left to be long suffering.

Dementia comes in many flavors. Most people recognize the condition known as Alzheimer's disease; it's the most common type of dementia, accounting for up to 70% of dementia cases. People with Alzheimer's disease develop short-term memory issues and speech difficulty, with difficulty finding words and repetition. There may be judgment issues and difficulty with spatial perception, which can lead to getting lost. Those affected often the lack insight to understand their disease and may not recognize the significant decline in their function.

Lewy body dementia is named after the abnormal proteins that are found in the brain at autopsy. Its symptoms may be much different than those of Alzheimer's disease. Patients often develop hallucinations -- seeing people, animals, or both -- especially when they get up or go to bed. They can develop Parkinsonism with rigidity and tremor, and their thought processes can be diminished, affecting attention, organized thought, and planning.

To confuse matters more, Alzheimer's disease and Lewy Body dementias can coexist in the same patient.

There are dozens of other types of dementias, but a couple of the more common include vascular dementia, a disease with numerous small strokes affecting brain function and fronto-temporal dementia that causes dramatic personality and speech changes.

There is no magic pill to prevent or cure dementia, and each patient is unique in how well or how poorly they do. Doctor's care extends beyond the patient to the patient's family and caregivers. The patient has to have their medical needs met, but the family often needs help and counseling. Their emotions are very much a rollercoaster, as they adapt to their family member continually changing in front of their eyes. Grief reactions can begin even before the patient passes away, as the body becomes a shell of the person who once was.

Sometimes, though, there are glimmers of the person's former personality, as some of the confusion and loss of memory resolves just for short periods of time and the curtain opens to reveal the person who once was. Those moments are gifts to families but sometimes they are just too brief.

There are some diseases that just aren't fair. We don't know why people develop dementia. The condition has no cure. While the diagnosis of a specific type of dementia can be made clinically, it can only be confirmed at autopsy, and there is no way to predict how long the patient and the family will suffer.