He's had dementia for over two years; he's now hallucinating frequently. He drove over 800 miles, (against everyone's wishes, no one could stop him), he revoked me as his POA. He was found by cops in car stop in middle of intersection in strange town many miles from here. Told them he was with his son in the car who died 7 1/2 years ago. He was transferred to our local hospital. He's been examined by psychiatrist, failed the tests. He has very rapidly gone down hill. He will be sent to a memory care facility in two days. However, today he was so much worse than yesterday. He now needs help walking, is in wheelchair, needs two people to assist when he gets up. I was there today and did not talk to him; he was sleeping, tried to wake him, no luck. He's on anti-psychotic which they said makes him lethargic, so today he was not on any drugs and is still very lethargic and just sleeps. They think he could have had a stroke. They now believe he has Lewey Body Dementia Any thoughts?

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My mom has Lewy and it is pretty distinctly different than the other dementia's in the beginning and middle stages. You really want to have him evaluated by both a neurologist and a gerontolgist to determine if what he has is Lewy.

When you google Lewy, some of the better sites are in the UK too as the US is so focused on all dementia's are Alzheimer's.

The psych med's - well as others have said for those that really have Lewy, the wrong drug will set them severly back. Other drugs too are -meh- for Lewy, like Aricept doesn't seem to work well but Exelon does. It is critically that whomever prescribed the med, is aware the Lewy is the likely type of dementia and that the med is OK & appropriate for Lewy.

My mom's hallucinations were animals in the early & middle stages; now in the later stages is it people who died in her childhood. The hallucinations are not stressful either. She just takes it all in stride. For a while it was cats & bunnies, they were just there over in the corner in her room. Didn't want food or to be petted either, just there. Now it's an aunt who died in her childhood and she just comes and sits over in a corner.

For Lewy there can also often be visual perception issues. Like smooth flooring appears to be cobblestones. Or things seem to have high contrast shadows. For my mom, having 100 way bulbs in lamps & then torch style floor lamps on timers was a good thing. As the level of light would be uniform and brighter. Objects on deep shelves often can't be really seen as they actually are and seem to have shadows on them. For dark furniture, we put light adhesive or white paper (butcher) on the shelves and it made a huge difference for her to see stuff.

Also there can be gait issues. It is called the Lewy Shuffle, they shuffle along on the floor and don't fully lift their feet up to walk. Wherever they walk needs to be rug free as the shuffle doesn't go away.

Could he have had a TIA - transient ischemic attack? My mom has had 3 of these in 3 years. There are 2 others @ her NH who are also Lewy and they too have had TIA's. This could just be whatever, but I wonder sometimes if Lewy dementias are more suspect to TIA's? Good luck in all this.
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Wolflover451 - While I agree with your take in the main, you should remember that the original question came from someone who wanted to know what LBD was.
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Its a tough road for all in the caregiving situation, emotions run high and low; patience wears thin (especially for an elder person trying to take care of their elder spouse as in my parents case). Each person is different and the suggestions above from caregiver99 from the Mayo clinic might be fine for the patient that isn't sleeping most of the time or agitated or has macular degeneration; or a dispostion of being frustrated easily. its hard to make someone eat that don't want to, hard to make someone drink when they don't want to; but we all do what we can with what we have. and sometimes I wonder, does it matter what type of special name they give to certain dementias, it is dementia and you deal with what you have. God bless us all
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Often medical professionals do not have the "entire picture". Have they checked for a UTI? Has he been on any new meds for example my mother went completely crazy on Levofloxin (an antibiotic) thought that people were hiding in the closet and throwing powder on her so she couldn't see them, became angry and hit me. It was a little known reaction usually in the elderly to this medication. Check the least obvious before accepting a diagnosis.
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I endorse LewySavvy's suggestion of finding a support group. Even if you are caring for a loved one not in your own home, meeting regularly with others who are dealing with Lewy can be a comfort and a help.

As SandyC7606 points out, a hospital or NH environment can be traumatic and disruptive even if a person doesn't have dementia. But for LBD the general dictum to keep things familiar and not to make changes in the environment is less applicable than it is for certain other forms of dementia. My husband's doctor, at the Mayo Clinic (the source of the quote posted by Caregiver99), repeatedly said "novelty-seeking experiences are therapeutic." Each visit he asked about our trips, vacations, and "novelty" experiences. There is less death of brain cells in LBD than in Alzheimer's, and therefore more value in stimulating experiences.
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Star: Educating yourself may be the best way for you to learn the in's and out's of Lewy Body Dementia. Someone already mentioned the website, LBDA.ORG. It is dedicated to supplying caregivers the most up-to-date information about the disease and caring for a loved one with it. They have a list of LBD caregiver support groups throughout the US and Canada. If there's a group near you, take advantage of it. You'll be with others going through the LBD rollercoaster ride and can learn from others as to what works and what doesn't (for them).

Another website, lbdtools has wealth of information. There is a Book Corner that shows books, mostly about LBD caregiving that are available there or via a link to Amazon.
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Keep in mind that seniors even without dementia can experience confusion and dementia like symptoms when taken out of their normal environment and put in a different environment like a hospital or NH. It's going on right now with a co workers father who is 90 and just had surgery.
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This is a rather long post that I have taken from the Mayo Clinic's website.

I hope it helps you understand a little more about the condition. Lack of understanding of a loved one's condition often leads to increased LIFE problems for their caregivers and family. You cannot know too much.
Lewy Body Dementia [LBD], is the second most common type of progressive dementia after Alzheimer's disease, and it causes a progressive decline in mental abilities.

It may also cause visual hallucinations, which generally take the form of objects, people or animals that aren't there. This can lead to unusual behavior such as having conversations with deceased loved ones.

Another indicator of Lewy body dementia may be significant fluctuations in alertness and attention, which may include daytime drowsiness or periods of staring into space. And, like Parkinson's disease, Lewy body dementia can result in rigid muscles, slowed movement and tremors.

In Lewy body dementia, protein deposits, called Lewy bodies, develop in nerve cells in regions of your brain involved in thinking, memory and muscular movement ][motorcontrol].

Lewy body dementia signs and symptoms may include:

Visual hallucinations. You may see visual hallucinations, such as colors, shapes, animals or people that aren't there. Hallucinations may be one of the first symptoms of Lewy body dementia. Some people also may experience sound (auditory), smell (olfactory) or touch (tactile) hallucinations.
Movement disorders. You may experience symptoms similar to those of Parkinson's disease (parkinsonian symptoms), such as slowed movement, rigid muscles, tremors or a shuffling walk.
Poor regulations of body function. Blood pressure, pulse, sweating and digestive process are regulated by a part of the nervous system that is often affected by Lewy body dementia. This can result in dizziness, falls and bowel issues.
Cognitive problems. You may experience thinking (cognitive) problems similar to problems experienced in Alzheimer's disease, such as confusion, reduced attention span and eventually memory loss.
Sleep difficulties. You may have a sleep disorder called rapid eye movement (REM) sleep behavior disorder that can cause you to physically act out your dreams while you're asleep.
Fluctuating attention. You may have frequent episodes of drowsiness, long periods of staring into space, long naps during the day or disorganized speech.
Depression. You may experience depression sometime during the course of your illness.

The cause of Lewy body dementia isn't known, but the disorder may be related to Alzheimer's or Parkinson's disease.

Lewy bodies contain a protein associated with Parkinson's disease.
Lewy bodies often are present in the brains of people with Parkinson's disease, Alzheimer's disease and other dementias.
People who have Lewy bodies in their brains also have the plaques and tangles associated with Alzheimer's disease.

Although the cause of Lewy body dementia isn't clear, several factors appear to increase the risk of developing the disease. They include:

Being older than 60
Being male
Having a family member [a blood relative] with Lewy body dementia

Lewy body dementia is progressive. Signs and symptoms worsen, causing:

Severe dementia
Death, on average about eight years after onset of the condition

Your doctor is likely to ask you and your spouse, partner, or close friend a number of questions about:

Changes in your memory, personality and behavior
Visual hallucinations
Medications you're taking
Your history of stroke, depression, alcohol abuse, head trauma or other neurological disorders

To be diagnosed with Lewy body dementia, you must have experienced a progressive decline in your ability to think, as well as two of the following:

Fluctuating alertness and thinking (cognitive) function
Repeated visual hallucinations
Parkinsonian symptoms

In addition, one or more of the following features are considered supportive of the diagnosis of Lewy body dementia:

REM sleep behavior disorder, a condition in which people act out their dreams during sleep
Autonomic dysfunction, which involves instability in blood pressure and heart rate, poor regulation of body temperature, sweating, and related symptoms

No single test can diagnose Lewy body dementia. Instead, doctors diagnose your condition through ruling out other conditions that may cause similar signs and symptoms. Tests may include:
Neurological and physical examination

As part of your physical examination, your doctor may also check for signs of Parkinson's disease, strokes, tumors or other medical conditions that can impair brain function as well as physical function. The neurological examination may test:

Eye movements
Sense of touch

Assessment of mental abilities

A short form of this type of test, which assesses your memory and thinking skills, can be done in less than 10 minutes in your doctor's office but is generally not useful in distinguishing Lewy body dementia from Alzheimer's disease. Longer forms of neuropsychological testing can take several hours, but these tests help identify your condition.

Your results are then compared with those of people from a similar age and education level. This can help distinguish normal from abnormal cognitive aging, and may help identify patterns in cognitive functions that provide clues to the underlying condition.
Blood tests

Simple blood tests can rule out physical problems that can affect brain function, such as vitamin B-12 deficiency or an underactive thyroid gland.
Electroencephalogram (EEG)

If your confusion comes and goes, your doctor may suggest an EEG. This test can help determine if your symptoms may be caused by seizures or Creutzfeldt-Jakob disease, a rare, degenerative brain disorder that leads to dementia. This painless test records the electrical activity in your brain via wires attached to your scalp.
Brain scans

Your doctor may order an MRI, PET or CT scan to check for evidence of Alzheimer's disease, stroke or bleeding, and to rule out the possibility of a tumor.

Your doctor may order a sleep evaluation to assess for REM [rapid Eye Movement, or 'dreaming sleep'] sleep behavior disorder or an autonomic function test to look for signs of heart rate and blood pressure instability.

Treatment can be challenging, and there's no cure for Lewy body dementia. Instead, doctors treat the individual symptoms.

Cholinesterase inhibitors. These Alzheimer's disease medications, such as rivastigmine (Exelon), work by increasing the levels of chemical messengers believed to be important for memory, thought and judgment (neurotransmitters) in the brain.

This can help improve alertness and cognition, and may help reduce hallucinations and other behavioral problems. Possible side effects may include gastrointestinal upset, excessive salivation and tearing, and frequent urination.
Parkinson's disease medications. These medications — such as carbidopa-levodopa (Sinemet) can help reduce parkinsonian symptoms, such as rigid muscles and slow movement — in some people with Lewy body dementia. However, these medications may also cause increased confusion, hallucinations and delusions.
Antipsychotic medications. These medications, such as quetiapine (Seroquel), olanzapine (Zyprexa) and others, may somewhat improve delusions and hallucinations. However, some people with Lewy body dementia have a dangerous sensitivity to some of these drugs. Reactions, which are sometimes irreversible, can include severe parkinsonian symptoms and confusion.
Medications to treat symptoms. Your doctor may prescribe medications to treat other symptoms associated with Lewy body dementia, such as sleep or movement problems.


Because antipsychotic drugs can worsen Lewy body dementia symptoms, it might be helpful to initially try nondrug approaches, such as:

Merely tolerating the behavior. Many times a person with Lewy body dementia isn't distressed by the hallucinations and even recognizes them as such. In these cases the side effects of medication may be worse than the experience of the hallucinations themselves.
Modifying the environment. Reducing clutter and distracting noise can make it easier for someone with dementia to focus and function. It can also reduce the risk that the person with Lewy body dementia will misperceive objects in the environment and produce behavior similar to hallucinations.
Modifying your responses. A caregiver's response to a behavior can make the behavior worse. It's best to avoid correcting and quizzing a person with dementia. Reassuring the person and validating his or her concerns can help resolve many situations.
Modifying tasks and daily routines. Break tasks into easier steps and focus on successes, not failures. Structure and routine during the day also help reduce confusion in people with dementia.

Each person with Lewy body dementia and other dementias experience symptoms and progression differently. Consequently, techniques to care for each person vary. Caregivers may need to adapt the following tips to individual situations:

Enhance communication. When talking with the person with Lewy body dementia, maintain eye contact. Speak slowly, in simple sentences, and don't rush the response. Present only one idea or instruction at a time. Use gestures and cues, such as pointing to objects.
Encourage exercise. Exercise benefits everyone, including people with dementia. Benefits of exercise include improved physical function, more controlled behavior and fewer depression symptoms. Some research shows physical activity may slow the progression of impaired thinking (cognitive) function in people with dementia.
Encourage participation in games and thinking activities. Participating in games, crossword puzzles and other activities that involve using thinking skills may help slow mental decline in people with dementia.
Establish a nighttime ritual. Behavior issues may be worse at night. Try to establish going-to-bed rituals that are calming and away from the noise of television, meal cleanup and active family members. Leave night lights on to prevent disorientation.

Limiting caffeine during the day, discouraging daytime napping and offering opportunities for exercise during the day may help prevent nighttime restlessness.

People with dementia often experience a worsening of their symptoms when they are frustrated or anxious. The following techniques may help promote relaxation.

Music therapy, which involves listening to soothing music
Pet therapy, which involves the use of animals, such as visits from dogs, to promote improved moods and behaviors in people with dementia
Aromatherapy, which uses fragrant plant oils
Massage therapy

People with Lewy body dementia often experience a mixture of emotions, such as confusion, frustration, anger, fear, uncertainty, grief and depression.

You can help a person cope with the disease by listening, reassuring the person that he or she still can enjoy life, being supportive and positive, and doing your best to help the person retain dignity and self-respect.

If you're a caregiver for someone with Lewy body dementia, watch the person closely to make sure he or she doesn't fall, lose consciousness or react negatively to medications. You can should also reassure the person during times of confusion, delusions or hallucinations.
Looking after yourself

The physical and emotional demands of caregiving can be exhausting. You may experience feelings of anger, guilt, frustration, discouragement, worry, grief or social isolation. If you're a caregiver for someone with Lewy body dementia, you can help yourself and help prevent caregiver burnout by doing the following:

Ask friends or other family members for help when you need it. Consider in-home health services to assist with the care of the person with Lewy body dementia.
Take care of your health. Exercise regularly and eat a healthy diet.
Learn as much about the disease as you can. Ask questions of doctors, social workers and others involved in the care of the person with Lewy body dementia.
Join a support group.

Many people with Lewy body dementia and their families can benefit from counseling or local support groups. Contact your local agencies on health or aging to get connected with support groups, doctors, resources, referrals, home care agencies, supervised living facilities, a telephone help line and educational seminars.


I wish you and your husband well, and hope that understanding his condition will make life a little easier for you.

We can only do what we can, and the rest is in the hands of God.
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You have been given some confusing information here. Being a R.N., working in the field for over 50 years now , a caregiver myself with a husband with solvent dementia, I can speak from my life experiences.
WE can give name to anything wrong with us. I call it LIFE. Trying to make some sense of such thing is insane to me. It will not change the fact that "he" has Dementia & requires inpatient care. Look to your physician or adult protective services in your area. Do your own research on line to look up the disease if you so wish. Best of Everything.....
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Star, I am so sorry that you are also dealing with this awful disease.. I have been for about 5 years now, along with PD that started about a year before the LBD really started to rear its ugly head. Seroquel @ 12.5 mg is helping some. My husband had become very sensitive to all his meds and is barely on any now, even his PD meds (sinemet) has been reduced, his BP was getting too low most times and within the past year came off all BP meds. He still takes an anti-depessant low dose, and donepezil. To make a long story short, I was have behavior problems with him and while he was at a scheduled respite he was showing this behaviors.. The VA wanted to keep him for my safety (I had several issues), all were amazed that I cared for him alone for so long.. Its a sad sad disease as all dementias are..

One of the biggest clues for it is fluctuations in cognition until it gets to the point (at least with my husband) it is now and its not fluctuating and just going downhill... It is good that he is already set up in to enter care..

ITs a very tough disease to care for alone which I had for 4+ years. We had to move and dont know anyone here... I am now feeling lost...

His POA I am sure was not able to be revoked, I would speak to an attorney about that..
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Star, I'm so very sorry you're dealing with this awful illness. My MIL has probable LBD too; have been caring for her for six years now and so much of what you describe is familiar. Listen to Jeanne - she's had years of experience and offers excellent advice. People with LBD can be extremely sensitive to certain anti-psychotics so make SURE the memory facility your husband is now in is aware of his diagnosis and the risks anti-psychotics can present. Haldol is particularly dangerous. Given how confused he is, a low dose of the anti-psychotic Seroquel (generic form: Quetiapine) might prove helpful. It's done wonders for my MIL but every one is different. If you haven't already, find him a good neurologist who has knowledge and experience with LBD. My heart goes out to you. Keep coming back as often as you need for support - we're here for you!
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To Jeanne Gibbs: He was on an anti-psychotic briefly in the hospital which made him very lethargic, slept all day. I don't know the name of the anti-psychotic. The hospital took him off all drugs except Symbicort for his COPD. He was transferred to memory care. He is very, very confused. He used to be very demanding, haven't seen that recently. Doesn't know what town he is in. Thinks his car is in the parking lot. Said he was not in the hospital, asked him where he was, his response: all over.
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Have a look at this article for a short description of the most common types of dementia:

"Lewy bodies" are clumps of alpha-synuclein protein. They were discovered by a researcher named Frederick Lewy (who worked in the same facility as Alzheimer). This bodies of protein also show up in Parkinson Disease brains. They are not detectable by brain imaging at this time. They can only be confirmed upon autopsy.

It can be a particularly difficult form of dementia for the caregivers. (Not that any are easy.) It includes both physical symptoms (similar to Parkinson's) and cognitive problems. Memory is often not the primary problem. Hallucinations are common, often very early in the disease.

Fluctuations are a hallmark of this disease. The symptoms can be very severe for a few hours or a few days and then be mild for a while. It is called the "roller coaster" dementia.

What anti-psychotic was he on?

I am so very sorry you are facing this, and that your husband seems to have declined so rapidly.

My husband was diagnosed with "probable Lewy Body Dementia" (it cannot be a certain diagnosis because it can only be confirmed after death) and lived with it for 10 years. An autopsy did confirm numerous bodies of alpha-synuclein protein.
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Lewy bodies would be visible in high-tech brain imaging such as CT, MRI, SPECT and PET. Go to for more information. It's not an easy disease to treat, because medications that work for other types of dementia have worsening effects on someone with Lewy Bodies in the brain. That may be what you are seeing.
He is no longer competent to sign a POA or even revoke one, and you should pursue Guardian status through the Surrogate's Court.
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