My doctor thinks I might have dementia with Lewy bodies. Wants more info to confirm, but I am worried. What exactly is it?

Need specialist eval. Lewy body dementia (dlb) is a progressive brain disorder that involves cognitive, behavioral, and motor system deterioration similar to that seen in parkinson's disease. It is not the same as alzheimer's, but presentations can overlap. People with dlb are often very sensitive to medications, especially those given for hallucinations. A neuropsychiatrist or neurologist can best help manage this.
Lewy bodies dementia. The only way to confirm it it is to have a brain biopsy or during the autopsy after dying. Both are unrealistic. The third option is a second opinion with a neurologist experienced in this particular disease, usually someone who has done research about it or who works in an academic or university center teaching others. In practical terms all dementias are treated equally with same medicines.
Lewy body dementia. Is a type of dementia hallmarked by recurrent visual hallucinations, extrapyramidal symptoms and cognitive fluctuations.
Progressive illness. Lewy body dementia, like alzheimer's disease, is a progressive disorder of the brain. You should consult a neurologist.
BUT, Rx available!!! Dopamine meds for physical parkinsonism: Azilect (mao-b selective inhibitor) & sinemet +/- Comtan (stalevo (carbidopa and levodopa and entacapone) is both together). Tailor rx watching for side effects. Avoid Dopamine agonists (requip xl/mirapex er/neupro)--too side effect prone for lewy body patients. For dementia: namenda, paired with Exelon patch or aricept. For psychosis: seroquel or even clozaril. For excess sleepiness: nuvigil.
Brief Details....... Neurodegenerative d/o featuring milder physical parkinsonism than parkinson's disease typically. (slowed movements, stiff/rigid muscles & posture, possibly resting tremor). But with early dementia, often with associated psychosis (visual hallucinations, delusional thoughts), excessive sleepiness, depression/anxiety/apathy, & rbd. Rbd = rem behavior d/o, causing acting-out of dreams in rem sleep.