“Behavior and mood symptoms in Lewy body dementia” – UCSF webinar notes

In mid-March, the UCSF Memory and Aging Center (MAC) presented a webinar on behavior and mood symptoms in Lewy body dementia (LBD), featuring Jennifer Merrilees, RN, PhD, a clinical nurse specialist at the MAC.  She discussed the common behavioral and mood symptoms that characterize LBD; how brain anatomy and neurotransmitters impact mood and behavior; and how to manage common behaviors, mainly through non-pharmacologic methods.  It was the second in an ongoing webinar series about LBD.

This webinar is worth listening to and/or reading the notes (see below)!  I’ve known Dr. Merrilees for over 15 years and respect her as one of the few nurses really interested in making sure that family caregivers can cope.  Check out, in particular, the various strategies she suggests for coping with sleep issues, hallucinations, delusions, apathy, depression, and anxiety.  Here’s an excerpt about her general approach she suggests for caregivers:

While every person and family are different, there are some general strategies that can be helpful for many:
• A structured daily routine can be a source of comfort (though flexibility may also be needed to accommodate fluctuations in energy or attention).
• An organized, simplified environment without clutter is ideal, due to the visual disturbances caused by LBD.
• Acknowledge what the person is still capable of and adapt as abilities change over time.
• Communication is key. Keep in mind that reasoning and logic are not always helpful.
• Expect that there will be good days and bad days.
• It is essential to prioritize your own health and well-being as a caregiver, even though it can be very difficult to do so.

Thanks to local Brain Support Network LBD support group member Helen Medsger for alerting us to the MAC’s LBD webinar series. You can find the list of the full series here:

UCSF Lewy Body Dementia Caregiver Webinar Series

The March 19th webinar featuring Dr. Merrilees was recorded and is available on YouTube:


We’ve posted about the first webinar in the series here:


For further information on Lewy body dementia, check out the Brain Support Network list of resources:

Brain Support Network’s Top Resources on LBD

Lauren Stroshane, with Stanford Parkinson’s Community Outreach, listened to the webinar and shared her notes.  See below.


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Behavior and mood symptoms in Lewy body dementia – Webinar notes
Presented by the UCSF Memory and Aging Center
March 19, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

In her work at the UCSF Memory and Aging Center, clinical nurse specialist Jennifer Merrilees has focused on behavioral symptoms in dementia and ways to promote family caregiver well-being.  She started the webinar with an overview of the typical symptoms that characterize Lewy body dementia (LBD).

• Visuospatial problems, hallucinations
• Sleep disturbances (dream enactment)
• Apathy, anxiety, and depression
• Fluctuating attention; lack of insight regarding one’s own deficits

• Paranoia
• Delusions/Capgras syndrome*
• Frequent falls
• Medication sensitivity
• Motor symptoms
• Blood pressure instability
• Urinary frequency and constipation
• Functional and cognitive decline

• Psychosis
• Agitation
• Difficulty swallowing food and water
• Decreased mobility
• Incontinence
• Decreased verbal communication
• Less able to recognize family

*Capgras syndrome is the delusion that a loved one has been replaced by an identical impostor.

What is happening in the brain?

Brain cells are called neurons, and are connected by junctions called synapses. Chemical messengers called neurotransmitters convey messages between synapses. Important neurotransmitters include serotonin, dopamine, epinephrine, norepinephrine, and acetylcholine, among others. If the brain has difficulty producing these substances, or suffers an imbalance, this affects the brain, causing lots of potential problems such as depression, impaired mobility and thinking, hallucinations, and other symptoms.

Lewy body disease starts in the limbic system and gradually spreads to other areas of the brain. The limbic system is the part of the brain that controls our emotions, motivation, and sleep, which explains why these aspects of behavior and function are so affected in someone with LBD. The fluctuations that occur in LBD are truly a function of brain disease, not something a person is doing intentionally.

Understanding mood and and behavioral symptoms

Hallucinations are the perception of something that isn’t actually there. They occur in 90 percent of people with DLB but are less common in those with PDD. Hallucinations , and are often non-threatening to the person who is experiencing them. Hallucinations can involve sounds but are more often images, often quite vivid, which may featuringe other people or animals. Sometimes there is a sense of a presence, like someone looking over one’s shoulder. Misperception of real visual stimuli – such as seeing a face in a patterned carpet – are called illusions and are common in LBD as well.

Delusions and Capgras syndrome are examples of fixed false beliefs, meaning the person truly believes these things regardless of evidence to the contrary. Delusions can be paranoid in nature, such as believing a spouse is cheating or that someone is out to get them, and are often associated with anxiety and memory loss. Capgras syndrome is a recurring belief that a familiar person – a family member or caregiver, for instance – has been replaced with an identical impostor. Episodes may last minutes, or even months, and can be very distressing for both patient and caregiver. This often presents together with visual hallucinations.

Sleep disturbances occur often in LBD, due to the involvement of the brain stem in the disease. Sleep issues typically occur in the form of dream enactment, also called REM behavior disorder (RBD), in which an individual physically acts out their dreams while unconscious: flailing, screaming, kicking, and sometimes falling out of bed or striking their bed partner. RBD can be dangerous for the patient as well as for the caregiver, but can often be managed with medication such as melatonin. Excessive daytime sleepiness and frequent napping is also common in LBD, with individuals sometimes sleeping up to eighteen or twenty hours in a day.

Mood changes are often a part of LBD. One of the most challenging mood changes can be apathy, which is a decline in motivation, interest, or initiative to do anything. This represents a change from the individual’s past personality and is different than sadness or depression; an apathetic person may feel perfectly fine and yet is content to sit for hours doing nothing. Apathy can also occur concurrently with anxiety and depression. It can be an enormous challenge for caregivers to overcome apathy and get the person to participate in an activity.

Depression is a prolonged low mood causing sadness and lack of motivation, often confused with apathy. Anxiety is a persistent worry or fear, often triggered by external factors such as going places or being separated from a caregiver. In LBD, anxiety is often associated with delusions and Capgras syndrome.

Strategies for managing behavior and mood symptoms

While every person and family are different, there are some general strategies that can be helpful for many:
• A structured daily routine can be a source of comfort (though flexibility may also be needed to accommodate fluctuations in energy or attention).
• An organized, simplified environment without clutter is ideal, due to the visual disturbances caused by LBD.
• Acknowledge what the person is still capable of and adapt as abilities change over time.
• Communication is key. Keep in mind that reasoning and logic are not always helpful.
• Expect that there will be good days and bad days.
• It is essential to prioritize your own health and well-being as a caregiver, even though it can be very difficult to do so.

Strategies for hallucinations and delusions

When a person is experiencing a visual hallucination, try to empathize with what they are feeling and understand that it is real to them – they are not doing it on purpose or pretending. Try to determine whether the hallucination is upsetting or not; if not, you can acknowledge it and offer support. If the hallucination is frightening to them, try to reassure them that you are here and redirect, such as suggesting, “let’s go into the other room.” Evaluate the environment from their perspective: what visual or auditory stimuli might be confusing or frightening? Try to eliminate shadows, loud noises, or objects that could seem disturbing, such as watching a war movie on the TV.

If someone is experiencing delusions, trying to reason with them may be perceived as conflict by the individual and might make things worse. If the person is convinced that they need to go to work, for instance, get creative with ways to mimic their former roles rather than contradicting their belief. Maybe you can give them some old checkbooks to work on, some paperwork, or some light gardening. Ensure that the environment is safe by removing any weapons or dangerous objects that the person might use against you if they are afraid.

Strategies for Capgras syndrome

Capgras syndrome can be very emotionally difficult for the caregiver. Try not to take it personally: this is the disease, not the person. See if there is anyone else – another caregiver, a family member, or friend – who can help calm the person, even over the phone. Consider time apart, if that is an option. Episodes of Capgras syndrome are often fairly transient, sometimes only lasting a few minutes. Leaving the room for a few minutes, or even changing into different clothes before coming back into the room, can be helpful.

Look for possible triggers for the individual’s behavior and think about strategies to de-escalate if they become agitated, such as a ride in the car, a favorite activity, or a snack. Be careful of how your actions may be perceived. Taking a break and leaving the room can be helpful to allow both of you to calm down. If non-pharmacological methods like these are not helpful, then it may be time to consult the physician about trying a medication.

Strategies for sleep problems

If sleep is disturbed, do your best to create a normal pattern for sleeping by going to bed and getting up at regular times. Foster a calm, structured environment with rituals for getting ready for bed, such as reading aloud or meditating. Making sure to get plenty of exposure to natural light and encouraging physical activity, as able, are also helpful. Minimize exposure to fluorescent lights or backlit screens for several hours before going to bed. Eliminate caffeine, and check with your healthcare provider about whether melatonin or trazodone might be helpful. Avoid sedating medications like Benadryl or “PM” Tylenol formulations, which can increase confusion.

Strategies for apathy

Remember that apathy is a symptom of dementia, not the person being lazy or not trying. Don’t make the assumption that the hobbies and activities they enjoyed in the past are still fun for them; sometimes things they formerly enjoyed become too difficult or confusing. Try to avoid asking open-ended questions, which can be hard for the person to answer and may result in them saying “no” or “nothing.” For instance, rather than asking, “What do you want to do today?”, try something more directive instead: “What coat do you want to wear for our walk?” or “Let’s go for a ride in the car.” Set a routine or schedule of activities so that they know what to expect and can anticipate what is coming next more easily, such as playing cards every evening after dinner.

Strategies for depression and anxiety

When someone is depressed, offer reassurance and empathy; don’t tell them how they should be feeling. Try to ascertain if there is a particular issue that is especially weighing on them which could be addressed. Think about activities that would meet their current cognitive abilities. Consider additional sources of support such as counseling, talking with a close friend or family member, or perhaps attending a support group meeting. Speak with their healthcare provider about whether medication might be helpful, such as a selective serotonin reuptake inhibitor (SSRI) such as escitalopram or citalopram.

Particularly in those with anxiety, try to identify triggers – are there particular topics or situations that make them especially anxious? Especially in early stages of LBD, the person may be aware that their cognitive abilities are changing, and may feel disoriented or fearful due to their changing capabilities. Some individuals with LBD become very anxious if their primary caregiver leaves the room and may “shadow” the care partner everywhere. If that is the case, try to use simple, scripted responses in your communication, such as “I’ll be right back” rather than a more lengthy explanation; this can facilitate the individual’s ability to understand but also saves your valuable energy. A whiteboard or calendar that they can refer to may be helpful, or waiting until they are engrossed in an activity before you leave the room. Explore your options for caregiver respite and support.

Medications to consider

Consult with your healthcare provider to see if any of these medications might be helpful, depending on the symptoms that are most bothersome.

Anti-depressants / anti-anxiety:
• citalopram (Celexa)
• sertraline (Zoloft)
• escitalopram (Lexapro)
• trazodone (Desyrel)
• mirtazapine (Remeron)

Atypical antipsychotics:
• acetylcholinesterase inhibitors (donepezil, galantamine, rivastigmine)
• quetiapine (Seroquel)
• olanzapine (Zyprexa)
• pimavanserin (Nuplazid)
• clozapine (Clozaril)

Sleep problems:
• melatonin
• clonazepam (Klonopin) for insomnia and dream enactment
• modafinil (Provigil) for excessive daytime sleepiness

Take care of yourself, too

No one can do this alone, and seeking help is not a failure. Two main suggestions:

1) Find a way to take a break from caregiving (respite), and
2) Seek whatever help is available to you.

Consider day programs, senior centers, or senior exercise programs with staff trained to work with people with dementia. Identify an activity that brings you pleasure and figure out what needs to happen in order for you to be able to do that activity. Seek emotional and practical support, as well as guidance, from a support group, healthcare provider, counselor, or close friend.

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Question & Answer Session

Q: How do you deal with the frequent fluctuations in awareness, attention, and cognition? And how to be sure it is due to DLB versus other issues like infection?

A: A core feature of DLB is fluctuating attention, and it is really difficult to anticipate or predict.
One way to differentiate from DLB symptoms versus other underlying issues is, when did it start? Was it fairly abrupt, with a day of onset you can pinpoint? If so, it might be delirium caused by an infection or something instead.

Q: When my sister has hallucinations, she goes into a vegetative state and can’t even see my hand in front of her face. Is it best to let this run its course or should I intervene when this happens?

A: Make sure the healthcare provider knows about these events. Consider taking a video to show when this happens. If she isn’t responding when you touch her or call her name, that might not be only a hallucination, there could be something else going on. See what the doctor says about this.

Q: How to cope with wakefulness in the middle of the night, waking up a lot, waking the caregiver? During the day, the patient is confused but calm, asking lots of repetitive questions.

A: Look at the daytime routine; is bedtime / awake time happening in a predictable and routine way? What is she doing during the day? Maybe more physical activity during the day will help to tire her out a bit more. A day program can sometimes help, by providing a routine and structured activity.

If this started abruptly, I would be concerned about whether this might actually be delirium – reversed sleep-wake cycle can be a hallmark of delirium – and so think back to when it started or if it was more of a gradual onset.

Q: Do you have any strategies for de-escalating panic attacks or anxiety?

A: For some people, touch can be reassuring. For others, touch can escalate their agitation. Try to determine what works best for your person. See if you can distract them to something else like a snack, a walk, a pet to divert their attention. These situations can be very stressful and difficult, give yourself permission to walk out of the room briefly (if safe), count to ten, then go back in. Also try to identify triggers that may precipitate this.