Lewy body: what will life be like when dementia worsens?

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.
Worsens over time. Neurodegenerative, progressive d/o with 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=rem behavior d/o, causing acting-out of dreams in rem sleep.
Rapid Decline. Patient's who suffer with lewy body dementia tend to worsen faster than other dementias. Core symptoms are fluctuating cognition, recurrent visual hallucinations, and motor features of parkinson's disease such as tremors, muscle rigidity and shuffling gait. These symptoms worsen until the individual is incapable of self-care. To meet their needs, the level of care must increase accordingly.
A bit more . Complicated. Lewy body disease like other dementias is progressive. You will need help with more things over time. Wishing you the best.