Stanford PD Community Blog

Stanford Parkinson's Community
  • Home
You are here: Home / Webinars - Announcements & Notes / Behavior and mood symptoms in Lewy body dementia – Webinar notes

Behavior and mood symptoms in Lewy body dementia – Webinar notes

April 10, 2020 By Lauren Stroshane

In mid-March, the UCSF Memory and Aging Center presented a webinar on behavior and mood symptoms in Lewy body dementia (LBD), as part of their ongoing Lewy Body Dementia Caregiver Webinar Series. The speaker was Jennifer Merrilees, RN, PhD, a Clinical Nurse Specialist at the UCSF Memory and Aging Center. She discussed the common behavioral and mood symptoms that characterize LBD; how brain anatomy and neurotransmitters impact mood and behavior; and ways to manage common behaviors, mainly through non-pharmacologic methods. The webinar included a question and answer session. We at Stanford Parkinson’s Community Outreach listened to the webinar and are sharing our notes.  

This webinar was recorded and can be viewed on YouTube.

If you have questions about the webinar, you can contact the UCSF Memory and Aging Center at MAC@ucsf.edu.

The speaker recommended these resources during the webinar:

Family Caregiver Alliance

Alzheimer’s Association

For additional resources on psychosis, sleep issues, anxiety, apathy, and depression –  including downloadable guides, links to online resources, and webinars and podcasts – see these pages on the Stanford Parkinson’s Community Outreach website:

  • Psychosis 
  • Sleep issues
  • Anxiety
  • Apathy
  • Depression

If you missed it, you can read our summary of the first webinar in this series.

Now… on to our notes from the webinar.

– Lauren

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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).  

EARLY STAGE

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

MODERATE STAGE

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

ADVANCED STAGE

  • 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 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 are often non-threatening to the person experiencing them. Hallucinations can involve sounds but are more often images, often quite vivid, featuring 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 is 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)
  • 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.

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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.

Filed Under: Webinars - Announcements & Notes

  • Home

Categories

  • Monthly List – PD Webinars
  • Webinars – Announcements & Notes
  • Monthly List – Caregiving Webinars
  • Monthly List – Support Groups
  • Support Groups – Meetings & Notes
  • News
  • Research
  • Events
  • Exercise
  • Comment

Top Pages of the Stanford Parkinson’s Community Outreach Website

  • List of Live, Virtual PD Exercise Classes
  • List of PD Exercise Videos
  • Symptoms of PD
  • For Those Newly Diagnosed
  • Support Resources for PD

Featured Posts

Your top three Parkinson’s questions answered by the APDA

The American Parkinson Disease Association (APDA) recently shared the top three questions they are … [Read More...]

National Day of Action – Thursday, September 22, 2022

From the American Parkinson Disease Association, Northwest Chapter (APDA NW), Tuesday, September … [Read More...]

APDA hosting a FREE Virtual Parkinson’s Education Conference Feb. 15-16, 2023

The two-day APDA Virtual Parkinson’s Conference: Educate, Empower, Engage will be geared towards … [Read More...]

Archive

  • March 2023 (7)
  • February 2023 (5)
  • January 2023 (4)
  • December 2022 (7)
  • November 2022 (4)
  • October 2022 (9)
  • September 2022 (2)
  • August 2022 (3)
  • July 2022 (5)
  • June 2022 (6)
  • May 2022 (9)
  • April 2022 (5)
  • March 2022 (8)
  • February 2022 (5)
  • January 2022 (13)
  • December 2021 (7)
  • November 2021 (19)
  • October 2021 (14)
  • September 2021 (12)
  • August 2021 (9)
  • July 2021 (7)
  • June 2021 (10)
  • May 2021 (10)
  • April 2021 (16)
  • March 2021 (8)
  • February 2021 (27)
  • January 2021 (18)
  • December 2020 (18)
  • November 2020 (19)
  • October 2020 (13)
  • September 2020 (7)
  • August 2020 (12)
  • July 2020 (15)
  • June 2020 (13)
  • May 2020 (17)
  • April 2020 (14)
  • March 2020 (14)
  • February 2020 (5)
  • January 2020 (12)
  • December 2019 (10)
  • November 2019 (6)
  • October 2019 (6)
  • September 2019 (7)
  • August 2019 (5)
  • July 2019 (10)
  • June 2019 (3)
  • May 2019 (8)
  • April 2019 (10)
  • March 2019 (5)
  • February 2019 (9)
  • January 2019 (12)
  • December 2018 (2)
  • November 2018 (8)
  • October 2018 (10)
  • September 2018 (2)
  • August 2018 (7)
  • July 2018 (10)
  • June 2018 (9)
  • May 2018 (3)
  • April 2018 (10)
  • March 2018 (4)
  • February 2018 (8)
  • January 2018 (11)
  • December 2017 (11)
  • November 2017 (5)
  • October 2017 (11)
  • September 2017 (10)
  • August 2017 (7)
  • July 2017 (13)
  • June 2017 (10)
  • May 2017 (14)
  • April 2017 (12)
  • March 2017 (17)
  • February 2017 (11)
  • January 2017 (13)
  • December 2016 (4)
  • November 2016 (6)
  • October 2016 (1)
  • September 2016 (11)
  • August 2016 (5)
  • July 2016 (8)
  • June 2016 (4)
  • May 2016 (2)
  • April 2016 (2)
  • March 2016 (1)
  • February 2016 (1)
  • January 2016 (4)
  • December 2015 (1)
  • November 2015 (2)
  • October 2015 (3)
  • September 2015 (1)
  • August 2015 (3)
  • July 2015 (1)
  • June 2015 (1)
  • May 2015 (1)
  • April 2015 (2)
  • March 2015 (4)
  • February 2015 (2)
  • January 2015 (1)
  • December 2014 (1)
  • November 2014 (2)
  • October 2014 (1)
  • September 2014 (2)
  • August 2014 (2)
  • July 2014 (1)
  • June 2014 (5)
  • May 2014 (1)
  • April 2014 (2)
  • March 2014 (3)
  • February 2014 (1)
  • January 2014 (1)
  • December 2013 (1)
  • November 2013 (1)
  • October 2013 (1)
  • September 2013 (1)
  • August 2013 (1)