Lewy body dementia symptoms: what families should know

Early signs can be easy to miss or mistake for something else. Watch for:

• Seeing things that aren't there. Often detailed and realistic, like people or animals. These may be one of the earliest signs.
• Good days and bad days. Attention and alertness swing, sometimes hour to hour. Your person may stare into space, seem very drowsy, or nap for hours, then seem much clearer the next day.
• Acting out dreams. Talking, shouting, punching or falling out of bed during vivid dreams. This can start years before other symptoms. Sometimes only a bed partner knows.
• Trouble with planning and space. Problems judging distance, multitasking or solving problems, often more than memory loss at first.
• Movement changes. Smaller handwriting, a softer voice, stiffness, slowness or a shuffling walk.
• Loss of smell, constipation, and dizziness when standing.

Doctors often look for three hallmark signs: hallucinations, swings in alertness and Parkinson's-like movement problems. Acting out dreams is another strong clue.

Doctors use a simple timing rule to tell the two forms apart:

• If thinking problems start within a year of movement problems (or before them), it's called dementia with Lewy bodies.
• If thinking problems start more than a year after Parkinson's movement problems, it's called Parkinson's disease dementia.

Not everyone with Parkinson's disease develops dementia. But if your person has Parkinson's and starts having hallucinations or new confusion, tell their neurologist.

There's no cure, but some symptoms can be eased for a time. A good plan often includes:

• A specialist. A neurologist who knows dementia or movement disorders is ideal. Ask the primary care doctor for a referral.
• Medicines for thinking symptoms. Some medicines used for Alzheimer's can also help thinking, and sometimes hallucinations, in Lewy body dementia. Ask the doctor whether they're right for your person.
• Therapy. Physical, speech and occupational therapy help with walking, swallowing, voice and everyday tasks. Music and art can ease anxiety.
• A sleep check. A sleep specialist can help with acting out dreams and daytime sleepiness.

The most important safety point: people with Lewy body dementia can have severe, even life-threatening reactions to some antipsychotic medicines, the kind sometimes given in hospitals for agitation or hallucinations. Parkinson's medicines can also make hallucinations worse, and anesthesia for surgery can cause lasting confusion.

Always tell every doctor, nurse and ER team about the diagnosis. Many families carry the free medical alert wallet card from the Lewy Body Dementia Association. Never start or stop a medicine without the doctor. This guide is general information, not medical advice.