{"id":7931,"date":"2025-01-23T07:37:49","date_gmt":"2025-01-23T12:37:49","guid":{"rendered":"https:\/\/www.silvercentury.org\/?p=7931"},"modified":"2025-02-13T14:01:46","modified_gmt":"2025-02-13T19:01:46","slug":"diagnosing-dementia-with-lewy-bodies","status":"publish","type":"post","link":"http:\/\/78.142.243.82\/~silvercentury\/2025\/01\/diagnosing-dementia-with-lewy-bodies\/","title":{"rendered":"Diagnosing Dementia with Lewy Bodies (Part 1)"},"content":{"rendered":"

This is the first of two blogs about Lewy body dementia. You’ll find part 2 here<\/a>.<\/span><\/i><\/p>\n

Some years ago, my friend Molly Grant, was concerned about her husband, Todd, so she asked his sister, Peggy, if she\u2019d noticed any change in him. <\/span><\/p>\n

\u201cYes,\u201d Peggy admitted. \u201cHe seems to have lost his self-confidence. And his posture has changed; he\u2019s slumped.\u201d<\/span><\/p>\n

Todd also seemed confused at times. He had what Molly called his cloudy days, but sometimes within hours his mind would clear. In addition, neither of them was sleeping well because he was so restless at night.<\/span><\/p>\n

When Todd finally agreed it was time to see a doctor, his primary care physician gave him a mini-mental exam\u2014a 10-minute test that screens for cognitive impairment. He scored 25 out of 30.<\/span><\/p>\n

\u201cThat\u2019s just on the edge,\u201d the doctor said. \u201cIt could be early Alzheimer\u2019s, but only time will tell. Come back in six months and we\u2019ll check again.\u201d<\/span><\/p>\n

Once home, Molly wondered how Todd would have scored if he had been tested on one of his cloudy days.<\/span><\/p>\n

Not long after, Todd tripped and fell. He wasn\u2019t hurt, but when it happened again a week later, Molly was sure it had to do with the way he shuffled when he walked. He was also having trouble with small tasks, like buttoning his shirt, and his falls were making him anxious.<\/span><\/p>\n

\u201cSomething\u2019s wrong with my body,\u201d he told Molly.<\/span><\/p>\n

A neurologist they consulted was immediately taken by Todd\u2019s shuffling gait and his anxiety. He detected rigidity in his muscles and slowness in his movements.<\/span><\/p>\n

\u201cTodd, I think you have Parkinson\u2019s Disease,\u201d he announced.<\/span><\/p>\n

Molly mentioned Todd\u2019s borderline score on the mini-mental test, but the doctor said, \u201cNah, that\u2019s close enough to normal.\u201d<\/span><\/p>\n

Todd started physical therapy to maintain his range of motion. It was a challenge when his mind was cloudy. Furthermore, a medication the neurologist prescribed for him for his Parkinson\u2019s rigidity made his confusion worse.<\/span><\/p>\n

His best friend from college was now a neurosurgeon. When he learned of Todd\u2019s symptoms and diagnosis, he wasn\u2019t satisfied. He sent the Grants to Dr. P., a neurologist friend of his. <\/span><\/p>\n

During the 15 minutes Dr. P. spent with Todd and Molly, he took four phone calls. When it looked as though he was going to dismiss them without a diagnosis, Todd blurted out, \u201cWhat\u2019s the diagnosis?\u201d<\/span><\/p>\n

\u201cYou have dementia with Lewy bodies.\u201d Pause. \u201cAnd Parkinson\u2019s.\u201d And he was gone.<\/span><\/p>\n

It was a shock to Molly and Todd that he had two diseases. Furthermore, they had never heard of dementia with Lewy bodies. A bit shaken, before they left for home, they called his sister Peggy to share the news. By the time they got home, Peggy had googled Lewy bodies and emailed them several links, most importantly that of the Lewy Body Dementia Association.<\/span><\/p>\n

Lewy body dementia is confusing in several ways. It\u2019s an umbrella term for two closely related diseases: dementia with Lewy bodies (DLB) and Parkinson\u2019s disease dementia (PDD). Both combine the motor symptoms of Parkinson\u2019s disease (PD) and the cognitive symptoms of dementia. <\/span><\/p>\n

Like Parkinson\u2019s itself, both are caused when a normal protein in the brain\u2014alpha-synuclein–begins to form clumps inside brain cells. Called Lewy bodies, the clumps eventually cause brain cells to die and the brain to shrink.<\/span><\/p>\n

DLB and PDD cause slightly different symptoms but a big difference in timing.<\/span><\/p>\n

PDD\u2019s cognitive symptoms show up only after the person has had PD motor symptoms\u2014tremor, shuffling gait, slow movements, rigidity\u2014for at least a year, often not until the person is in late PD. Dementia with Lewy bodies, on the other hand, generally starts with cognitive symptoms, and within a year the motor symptoms of Parkinson\u2019s begin.<\/span><\/p>\n

Therefore, it\u2019s clear that Todd, whose cognitive problems came first and PD symptoms soon after, has DLB, not PDD, and certainly not both dementia with Lewy bodies <\/span>and <\/span><\/i>Parkinson\u2019s. For DLB patients, Parkinson\u2019s symptoms are part of the disease.<\/span><\/p>\n

Todd is not alone in being misdiagnosed at first. An autopsy study showed that health care providers miss DLB in one out of three<\/span> cases.<\/span><\/p>\n

Yet after Alzheimer\u2019s disease, DLB is the most common form of neurodegenerative dementia. It\u2019s been called the most common disease no one has heard of. <\/span><\/p>\n

An estimated 6.7 million Americans have Alzheimer\u2019s disease, and another million have Parkinson\u2019s. Both are well known. Though about 1.4 million people have dementia with Lewy bodies, it\u2019s almost unknown.<\/span><\/p>\n

Why?<\/span><\/p>\n

DLB was first documented in autopsy in 1976, but it wasn\u2019t until 1996 that experts reached a consensus on how to diagnose it. Medical schools began to teach about it some years later. That\u2019s why many physicians in practice today don\u2019t know of it.<\/span><\/p>\n

But even for those who have heard of DLB, it\u2019s challenging to diagnose. In part 2, I\u2019ll describe the core symptoms necessary for a diagnosis, and other supportive symptoms that help lock it in, as well as symptoms that can be misleading.<\/span><\/p>\n

I\u2019ll also describe how to find a physician who is knowledgeable about dementia with Lewy bodies. It\u2019s important to diagnose DLB early and I\u2019ll explain why.<\/span><\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Some years ago, my friend Molly Grant, was concerned about her husband, Todd, so she asked his sister, Peggy, if she\u2019d noticed any change in him. <\/span><\/p>\n

Read more Diagnosing Dementia with Lewy Bodies (Part 1)<\/span> ›<\/span><\/a><\/div>\n

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