Tamara Real knew something was wrong when her husband, Carl Rinne, a retired University of Michigan professor, began to experience an array of odd and seemingly unrelated symptoms — including waxing and waning attention, muscle rigidity and, perhaps most alarming, hallucinations of acrobats.
The couple received a battery of questions from specialists in their search for answers.
But one query hit particularly close to home.
During a consultation with Henry Paulson, M.D., Ph.D., a faculty neurologist in the U-M Department of Neurology Cognitive Disorders Clinic and the director of the Michigan Alzheimer’s Disease Center, the couple was asked if Rinne was acting out his dreams.
“Carl and I looked at each other and said, ‘Have you been looking in our bedroom window?’” Real recalls.
The eventual diagnosis: Lewy body dementia.
A progressive neurodegenerative disease with cognitive, motor, sleep, behavioral and other neurological symptoms, Lewy body dementia is the second most common form of degenerative dementia. It recently made national headlines after news reports revealed that actor Robin Williams experienced several of the symptoms in the year before his death. (An autopsy confirmed the condition.)
A search for answers
Despite the prevalence of Lewy body dementia, confirming it can be challenging for doctors and patients alike, says Paulson’s fellow U-M neurologist Nancy Barbas, M.D., MSW.
“Many symptoms mimic those of Alzheimer’s disease, Parkinson’s disease and other disorders,” says Barbas. “Many symptoms go unrecognized by patients and are often not shared with their doctors.”
Barbas cites published research underscoring the frustration such patients face:
- 78 percent of patients surveyed were first diagnosed with another condition.
- Half of the patients saw three or more doctors in 10 or more visits over a year before the diagnosis Lewy body dementia was determined.
- In 62 percent of cases, a neurologist made the diagnosis; primary care providers diagnosed 6 percent of cases.
This is why Real has resolved that other families should not face the same uncertainty about a disease so often unrecognized by medical professionals.
With her support, the Rinne Lewy Body Dementia Initiative was established within the U-M Alzheimer’s Disease Center in December 2015 to support patients with an early diagnosis of Lewy body dementia and their care partners, educate health care workers and grow public awareness of the condition.
Collaboration, Paulson says, is crucial.
“If doctors can understand what this condition is and how it’s different from other forms of dementia,” he says, “it will allow people suffering from it to get a diagnosis much earlier. That matters.”
What doctors should ask
Paulson and Barbas recommend that physicians engage patients and family members in a wide-ranging conversation about daily activities and routines, exploring those areas for clues that might reveal the possibility of Lewy body dementia.
Among the areas of focus:
- Has your regular sleep pattern changed? If so, in what ways?
- Can you recall any unusual dreams? Have you been told you sleepwalk or “act out” your dreams?
Cognition and reasoning
- Have you had trouble completing tasks made up of multiple steps, such as grocery shopping, handling money or operating a home appliance?
- While driving, have you lost your way trying to find a familiar place?
- When you’re awake, have you seen anything others can’t see, like a vision or hallucination, or have you had persistent thoughts or ideas you can’t explain?
- Have you noticed that your alertness or attention comes and goes? Are you having “good days” and “bad days” for no apparent reason?
- Have you noticed changes in how you get around, such as moving more slowly, imbalance or falls
- Have you noticed changes in walking such as shuffling or dragging your feet?
- Have you experienced shaking or tremors?
Additional points for discussion
- Have you had more trouble than usual with constipation?
- Have you noticed changes in your handwriting?
- Do you feel lightheaded when you stand up or change position? Have you had episodes of passing out for no clear reason?
The new three-minute Lewy Body Composite Risk Score is another useful tool for physicians.