What is Lewy body dementia?

What it looks like day to day

LBD is the dementia of “good days and bad days.” On Monday your loved one follows the news and jokes with you; on Tuesday they stare into space, nap for hours, and speak in a jumble.

Many see vivid, detailed things that are not there, often people or animals, sometimes without fear. Nights may involve shouting, punching or kicking during dreams. A shuffling walk, stiffness and dizziness on standing make falls a real risk. Mayo Clinic lists all of these, plus depression, apathy, constipation and bladder problems.

7 warning signs of Lewy body dementia

1. Seeing detailed people or animals that are not there
2. Big swings in alertness, with staring spells or long daytime naps
3. Acting out dreams: shouting, kicking or punching in sleep
4. Slowness, stiffness, tremor or a shuffling walk
5. Dizziness or fainting on standing
6. Trouble judging distances and shapes
7. Memory and attention problems that come and go

Mayo Clinic notes Lewy body dementia is the second most common type of dementia after Alzheimer’s, and it affects more men than women.

Why it happens

Lewy bodies are clumps of a protein that is also linked to Parkinson’s disease. They disrupt brain chemistry that controls thinking, movement, sleep and automatic functions like blood pressure. LBD includes dementia with Lewy bodies and Parkinson’s disease dementia. Risk factors include age over 60, being male and a family history of LBD or Parkinson’s.

An important medication warning

Mayo Clinic cautions that antipsychotic medicines can cause severe confusion, worse movement symptoms, sedation and sometimes death in people with LBD. If your loved one has LBD, make sure every doctor, emergency room and hospital knows. Our hospital information sheet is a good place to write it down.

What helps at home

• Do not argue about hallucinations that are not frightening; respond calmly and redirect.
• Improve lighting to reduce shadows that can be misread.
• Have your loved one sit, then stand slowly, to manage dizziness.

Days vary a lot, so plan around the swings:

• Plan important activities for alert times and accept slower days.
• Keep a calming bedtime routine and safe bedroom setup for dream-enactment.
• Stay active: exercise, music and social contact may help mood and function.

How Lewy body dementia is diagnosed

No single test confirms it. According to Mayo Clinic, doctors look for a gradual decline in thinking plus at least two of four core features: fluctuating alertness, recurring visual hallucinations, Parkinson-like movement symptoms and REM sleep behavior disorder. Blood pressure and temperature swings, and a bad reaction to antipsychotics, support the diagnosis.

Expect a neurological exam, memory testing, blood tests to rule out problems such as low vitamin B-12 or thyroid disease, and brain imaging. Some people also have a sleep study or a scan that looks at dopamine activity.

Treatment options to ask about

There is no cure, but symptoms can often be eased. Mayo Clinic describes cholinesterase inhibitors such as rivastigmine, donepezil and galantamine, which may improve alertness, thinking and hallucinations; memantine for some people; and carbidopa-levodopa for stiffness, which can worsen confusion or hallucinations. It also advises avoiding sleep aids containing diphenhydramine and bladder drugs such as oxybutynin, and limiting sedatives. Every medicine decision belongs with your loved one’s doctor.

Talking with someone who has LBD

• Speak slowly and keep eye contact.
• Give one instruction at a time, with a gesture.
• Do not quiz or correct; offer reassurance.
• Keep rooms uncluttered and quiet.

Families can find Lewy body dementia support through the Alzheimer’s Association Helpline (800-272-3900) and Florida’s Memory Disorder Clinics.

When to call the doctor

Call about new or frightening hallucinations, falls, fainting, choking, or a sudden worsening in confusion, which may be delirium from infection or medication. Before any new sleep, nausea or behavior medicine, ask whether it is safe for LBD.

Lewy body dementia vs. Alzheimer’s

In Alzheimer’s, memory loss usually comes first and changes are fairly steady. In LBD, attention, visual-spatial problems, hallucinations and movement symptoms often lead, and alertness can swing dramatically from day to day. The two can coexist.

Care at home

Because symptoms fluctuate, a consistent companion who knows your loved one’s baseline can notice changes early and adapt the day. Read more on in-home care for Lewy body dementia and our dementia companion care. Families caring for a spouse with LBD often need regular respite, since nights can be exhausting.

Related terms

• Alzheimer’s disease
• Sundowning
• Agitation
• Delirium
• Frontotemporal dementia
• Palliative care