Webinar Notes – Hallucinations and delusions in LBD

On June 28th, the Lewy Body Dementia Association (lbda.org) hosted a good one-hour webinar on psychosis (hallucinations and delusions) in Lewy Body Dementia (LBD).  This post provides the Brain Support Network notes from the webinar….

LBD is an umbrella term that refers to two disorders — Parkinson’s Disease Dementia and Dementia with Lewy Bodies. A hallucination is seeing something that isn’t there. A delusion is having a fixed belief about something that isn’t correct. Unfortunately many with LBD are sensitive to antipsychotic medications that are used to manage psychosis.

The presenter, Dr. Jim Galvin, an LBD expert now at Florida Atlantic University, addressed these topics:

  • short review of LBD symptoms
  • neuropsychiatric symptoms of dementia
  • hallucinations: what are most common?
  • delusions: what are most common?
  • challenges in neuropsychiatric assessment
  • management of these symptoms, including non-pharmacological approach
  • techniques and methods to respond to hallucinations
    managing other neuropsychiatric symptoms
  • medication to treat psychosis (including medications in the pipeline)
  • Brain Support Network volunteer Denise Dagan took detailed notes from the webinar (including the question and answer session). See below. (Some time stamps are included if you want to watch the recording.)

Overall, Denise had these comments to share: “Dr. Galvin highlights challenges in determining whether the patient is dealing with hallucinations or delusions. He notes possible causes because without determining the cause there cannot be an effective treatment plan. He takes a conservative view, preferring non-pharmacological interventions whenever possible. He does approve of the use of anti-psychotics when safety of the patient or others is at risk. He gives examples of non-pharmacological approaches to dealing with these difficult behaviors, which drugs do work best, new drugs in the pipeline, and finally answers several good questions from those who attended the live webinar.”

The slides from the presentation are here.

The webinar recording is here.

– Robin

LBDU Webinar: The Reality of LBD – Hallucinations & Delusions & How to Manage Them

Wednesday, June 28, 2017

Presenter: James E. Galvin, MD, MPH, Professor of Integrated Medical Science, Florida Atlantic University, [email protected]

Dr. Galvin began with a quick review of things associated with LBD, including:

Movement Problems:
– Bradykinesia (slowness in initiating movements)
– Rigidity
– Postural instability with repeated falls
– Slow, shuffling gait
– Myoclonus (quick, involuntary muscle jerks)
– Rare rest tremor but may have postural or action tremor

Cognitive Problems:
– Visual tracking and attention
– Visual-spatial and perceptual
– Verbal and motor initiation
– Clock drawing and block design (contraction)
– Timed attention tasks
– Executive tasks

Psychiatric/Behavioral Problems:
– Visual Hallucinations
– Hallucination in other modalities
– Delusions
– Depression
– Anxiety
– Apathy
– REM Sleep behavior disorder
– Cognitive fluctuations

Autonomic/Constitutional Problems:
– Loss of Smell
– Constipation
– Urinary incontinence
– Drooling
– Runny nose
– Dizziness and lightheaded
– Abnormal sweating
– Sexual dysfuntion
– Oily flaky skin

5:15 Chart depicting first symptoms and most disturbing symptoms reported by caregivers in the mild, moderate, and severe stages of LBD. Caregivers usually reported cognitive change as the first symptom presented as well as being the most disturbing symptom in every stage.

Neuropsychiatric Symptoms (NPS) of Dementia
– Also known as behavioral and psychiatric symptoms of dementia (BPSD)
– While cognitive impairment is the clinical hallmark of dementia, NPS often dominate both presentation and course.
– Present in >90% of patients at some point
– Etiology (why they occur) is not well understood, but is likely multifactorial (hard to pin to any one cause)

7:00 Chart showing that behavioral symptoms worsen as cognition declines. As function and cognition declines there is an increase in behavioral issues, resultant increased caregiver burden. Dementia patients who display marked behavioral disturbances in a given time frame are more likely to display them again in the future.

7:45 Interactive chart developed for Alzheimer’s showing a timeline of NPS in Dementia. The chart shows the appearance of symptoms in the months before and after a diagnosis of dementia (confirmed at autopsy). Symptoms charted are:
– Agitative symptoms (agitation, irritability, aggression)
– Depressive symptoms ( depression, social withdrawal, suicidal ideation, mood changes)
– Psychotic symptoms (paranoia, accusatory, delusions, hallucinations)
– Other symptoms (diurnal rhythm, anxiety, wandering, socially unacceptable and sexually inappropriate behaviors)

For Alzheimer’s patients, hallucinations were charted as appearing 18+ months after diagnosis, and delusions as appearing 6 months after diagnosis. Dr. Galvin moved hallucinations and delusions to around the time of diagnosis.

8:54 Venn diagram of these (potential) overlapping symptoms:
– Psychomotor Agitation (walking aimlessly, pacing, repetitive actions, dressing/undressing, sleep disturbances, etc)
– Aggression (aggressive resistance, physical aggression, verbal aggression)
– Psychosis (hallucinations, delusions, misidentifications)
– Sleep (REM sleep behavior disorder – RBD, Periodic limb movement disorder – PLMD)
– Depression (sad, tearful, hopeless, low self-esteem, anxiety, guilt)
– Apathy (withdrawn, lack of interest, amotivation)

– Abnormal perception without a physical stimulus (senses tell them something is there when there is no stimuli)
– Simple or complex: Simple is brief and fragmentary. Complex is detailed.

Sample Hallucinations in LBD
– Sense of presence: Sensation that someone is looking over your shoulder. Often a deceased relative or animal.
– Passage: Seeing something pass sideways in the peripheral of vision. Often people, previously owned pet, or shadows.
– Illusions: Misperception based on actual objects. Seeing a person when there is a coat on a hanger. Images emerging from wallpaper.

Complex Hallucination in LBD
– Predominantly visual in nature:
– They occur early in the course of the disease
– May not be frightening to patients
– Typically of little people (leprechaun), children, or furry animals
– May or may not have an auditory component (hearing the vision, as well as seeing it). May become frustrated if they talk to the vision, but it/they don’t talk back.
– Complex in nature (person can describe the whole scene)
– Less common are hearing, smelling, tasting, and feeling something that is not really there.

– False, fixed beliefs
– Maintained despite evidence to the contrary
– Several types in DLB
* Misidentification (most common)
* Paranoid (someone’s out to get you)
* Phantom boarder (other people living in the house)
* Abandonment (when the caregiver leaves the room, they have been left behind)

Common Delusions in LBD
* Capgras:  familiar people are thought to be identical or near-identical impostors.
* Fregoli:  familiar people are thought to be disguised as strangers.
* Othello:  extreme jealousy – usually spousal infidelity.
* Cotard:  belief that one does not actually exist or is dead.
* Reduplicative paramnesia:  a place simultaneously exist in two or more physical locations. They are home, but they want to go home.
* Mirrored self-identification:  not recognizing self in mirror
* Ekbom:  infestation by insects of parasites
* Diogenes:  self-neglect, domestic squalor (usually living alone)

Capgras Syndrome and Lewy Bodies: Characterized by the recurrent and transient belief that a person, usually someone closely related, has been replaced by an imposter. The imposter usually has features that are very similar to those of the original person, although subtle physical differences are used to differentiate the original person from the imposter.

17:50 Dr. Galvin examined a case series of 55 consecutive LBD patients (11 with Capgras, 44 without) and presented a slide showing the results of the study. 100% of patients with Capgras had hallucinations. Researchers found:
– Capgras patients experiences more visual hallucinations, had higher self-reports anxiety, and had worse behavioral ratings.
– Capgras patients less likely to tolerate cholinesterase inhibitors (Aricept, etc.).
– Capgras caregivers experienced more burden.
– Predictors of Capgras were visual hallucinations and anxiety.

Challenges in Neuropsychiatric Assessment:
* Clinician challenges are being unfamiliar with appropriate diagnostic criteria for these delusions, limited time for visits, and overlapping symptoms (depression and dementia) complicating the differential diagnosis.
* Patient challenges. They may not complain about hallucinations/delusions and may divert attention to more routine problems. May take offense at the suggestion that they have psychosis. Medical history may be unreliable because of their dementia and poor family recollection.
* Caregiver issues include needing help to recognize symptoms and being overwhelmed and stressed out.
* Neuropsychiatric symptoms may have multiple etiologies (causes). Primarily of which is the underlying disease (LBD) and its neuropathology and secondarily due to drug therapy or co-morbid conditions. There is the potential of drug-induced neuropsychiatric symptoms with current medications.

21:05 Chart showing the NPI Questionnaire (12 questions) to diagnose behavioral changes, followed by the charting of the frequency of these symptoms in various forms of dementia. By comparing answers to the questionnaire with the symptom frequency chart you get a visual of which type of dementia you are probably dealing with.

22:50 Other tools include the Healthy Aging Brain Care Monitor (HABC-M), which allows the caregiver to assess the emergence and severity of dementia-related symptoms, promote effective decision-making, drive individualized interventions, and monitor response to therapy. Caregiver chart symptoms over 5-6 months. Higher score represents greater impairment. This has proved consistent and useful.

Another tool is the Noise-Pareidolia Test shows patients images with and without faces and asks them to determine which they see. It distinguishes between Alzheimers, LBD, and healthy controls with 92% effectiveness. He gave a demonstration of the test.

Key Elements to Approach NPS
– Accurate characterization and contextualization (delusion, hallucination, or something else?)
– Examine underlying causes
– Devise treatment plan (specific to each patient)
– Avoid “knee-jerk” use of psychotropic medications (especially if medicines aren’t necessary)
– Behavior and environmental modifications should be tried first – with 3 exceptions:  suicide risk; psychosis causing harm or potential to cause harm; aggression causing risk
– Access intervention effectiveness. Not take this pill forever for the rest of your life.

Does This Symptom Need to Be Treated?
– As a general rule, most behaviors do not need medications
– If a medication is used, then the lowest possible dose for the shortest period of time is the best route
– In order to “trigger” use of a medication, one of the following three questions must be answered “YES”:
* Does the behavior interfere with patient care in a meaningful way?
* Does the behavior interfere with patient safety?
* Does the behavior interfere with someone else’s safety
– Example:  If the patient is chasing butterflies, no meds. If they chase them out the 10th story window, yes meds.
– If “NO” is the answer to all three, medications should NOT be used.

“Real-World” Management
– In many settings, NPS treated with antipsychotic medications
– No FDA-approved therapy for NPS
– ALL use is off-label = none was developed or approved for LBD
* Antipsychotics
* Antidepressants
* Mood stabilizers
* Benzodiazepines
* Cholinesterase inhibitors (Aricept, etc.)
* Memantine (Namenda)
– People with LBD are more likely to die taking these medications.

Non-Pharmacologic Management:
– Goals:  Create a routine; Provide stability; Avoid distractions

Suggestions to achieve goals:
— Provide a predictable and prompted routine
— Maintain familiar possessions and clothes
— Explain in simple language
— Simple tasks
— Provide a safe environment
— Use calendars, clocks, labels, and color coding
— Reduce stimulation and crowds
— Reduce clutter, noise and excess glare
— Consider an adult day program

Techniques and methods to respond to hallucinations
– Remove trigger, distract/redirect (if you find mirrors, news, etc. prompts mirrored self-identification, capgras, etc. remove them. ALWAYS distract or redirect after minimizing importance of hallucination.
– Caregiver education and support groups to learn what to expect and how to respond
– Adult day programs keep patients engaged/focused and minimize hallucination
– Psychotherapy techniques (memory retraining)
– Stimulation-oriented treatment (music, art, recreational or social therapies, exercise, dance, boxing)
– Montessori-based activities ( memory BINGO, group sorting)

Most famous non-pharmacological approach developed by Helen Kales, Geriatrician – DICE Approach:
* Describe – caregiver describes the behavior, how did it start, when did it start, what degree of distress does it cause
* Investigate – what is the cause of the behavior? UTI, poor sleep, new medication
* Create – a plan as a team to reduce symptoms and distress caused by behavior
* Evaluate – how is the plan working?

Another is: Management of Dementia-Related Behavior: A Practical Approach = DEMENTIA (pneumonic)
* Define target symptoms and severity
* Environmental factors addressed (triggers?)
* Medical illness revisited (new or worsening medical illness)
* Establish psychiatric diagnosis (hallucination, delusion, etc.)
* Non-pharmacological management (put something in practice and see if that helps)
* Targeted pharmacotherapy (if needed failing non-pharmacological approach)
* Initiate low and go slow (lowest dose and ramp up)
* Assess outcomes and re-evaluate (repeatedly)

Back to the Venn Diagram. Addressing behavioral symptoms non-pharmacologically:
* Apathy – give them activity-based therapy
* Agitation/Agression – employ cognitive/behavioral therapy, therapeutic touch, music therapy, etc.
* Psychosis – change meds., correct hearing & visual impairment, improve lighting, modify environment

34:08 Match treatment to symptom chart shows “negative” symptoms that respond to non-pharmacological interventions and “positive” symptoms that respond well to pharmacologic interventions.

Treatment of Psychosis. First, avoid “Classic” neuroleptic medications such as haloperidol (Haldol) due to increased risk of side effects, such as enhanced parkinsonism and neuroleptic malignant syndrome (potentially fatal).

Clozapine (Clozaril)
– RCT in PD psychosis demonstrated efficacy
– many side effects
– Not commonly used
– Can worsen motor-function

Quetiapine (Seroquel)
– Limited actual RCT evidence but anecdotal experience suggest effectively
– Less side effects than Clozapine
– Can worsen motor function
– Can worsen autonomic symptoms
– Used cautiously but less likely to cause side-effects like Clozapine

36:34 Pimavanserin (Nuplazid).
Chart demonstrating efficacy for:
– Reduced psychosis
– Reduced caregiver burden
– Improving nighttime sleep
– Improving daytime wakefulness
Expensive, but effective.

RVT-101 (Interprirdine) = new medication undergoing studies for LBD and Alzheimer’s.
– Increase amount of acetylcholine
– Inhibits acetylcholine receptor activity which reduces hallucinations
– Results should be available in 2018

Nelotanserin = another new medication undergoing studies for LBD specifically
– looking to improve visual hallucinations and RBD in DLB patients.
– still enrolling patients for these studies.

39:41  Summary
– Hallucinations and delusions are common in LBD
– New emergent symptoms require a medical evaluation
– Not all behaviors require medication
– Non-pharmacological approaches should be first line
– If starting a medication, know all there is to know about that medication
– Start at lowest dose, increase does slowly, constantly re-evaluate
– New medications are being tested that specifically target hallucinations in LBD


40:46  Question & Answer

Q: Mother with LBD rationalized or makes excuses about her symptoms. Is this a form of delusion?
A: All dementias are associated with anosognosia (impaired awareness of illness). It is more common in Alzheimer’s and less common in LBD. They don’t perceive the problem so its hard for you to convince them they have a problem. This is more of a perceptual problem than delusion. There’s no direct treatment, just reinforcement in the moment, sometimes every day.

Q: Can a person simultaneously have more than one type of delusion?
A: Yes. People with dementia can have multiple types of hallucinations and delusions, or none at all. That’s why each person needs an individualized treatment plan.

Q: Mother age 92 has LBD and has been sedate and on hospice but has began yelling but her intelligibility is nonexistent. Will medications help this?
A: Vocalizations are often a way to express an unmet need (anxiety, hungry, dirty, pain, depression, etc.) and are often not a full sentence. May be repeated. They do not respond to medications unless you sedate them. The key is to address unmet needs, distract and redirect to reduce vocalizations temporarily.

Q: Use of Nuplazid in DLB because it was approved for Parkinson’s. What is your experience using this in DLB and is there any data?
A: No data. Not a first-line drug. So expensive that it requires pre-approval from insurance companies. In his experience, his patients (10-15 people) have had good results, but not total elimination of symptoms.

Q: LBD non-drug intervention or clinical trials? Especially for West Coast?
A: LBDA website, but all clinical trials are registered at www.clinicaltrials.gov. Search for disease you are interested in and sort by state or type to find one you may want to participate in. This lists international studies (Canada), as well.

Q: How is it best to field concerns from the caregiver when medications cause greater frequency of hallucinations and delusions when treating MD is not listening to caregiver’s concerns?
A: Need to really find out why. It could be medications, but could also be drug-drug interactions, like Aricept and bladder medicine for incontinence. One raises acetylcholine, the other blocks it. What else is going on in their medical history, like a UTI. Work with the doctor to make sure he/she understands family concerns and determine what the problems is caused by.

Q: Swallowing issues in late LBD. Any safe treatments for aggression for someone who refuses to or can’t swallow?
A: Some meds are available as dissolvable or liquid form. Because of flavoring, patient may still resist. Older medicines may have intramuscular forms you can inject. Newer meds don’t usually come this way. Some could be put in tubing if they are being tube-fed.

Q: Any clinical trials in the pipeline for healthy adults, children or siblings of those who have had a family member die with LBD, or to be control in studies on LBD.
A: Yes, for Alzheimer’s and Parkinson’s disease, but he’s not familiar with any for LBD, specifically. We will learn a lot from the ongoing studies that can be applied to LBD, but no.

Q: Why multiple site studies are important as far as recruitment and numbers?
A: Single site studies have the advantage in that different measures are collected and samples are processed is very consistent, but the disadvantage is that test subjects tend to have uniform enrollees where the demographics don’t match other parts of the country very well. Multiple sites may have less uniformed data collection, but the population will be more heterogeneous and useful to the general populace.

Q: Mother has died, but was diagnosed mid-way through LBD with hallucinations and put on Seroquel but stopped when daughter found it has a black box (unapproved by FDA) warning. What do you think about black box warnings?
A: These meds were developed for use on schizophrenics, aged 18-40, so there have been no registered studies on older adults in any of these medications. There was one study called the CATIE-AD study on people with Alzheimer’s. They found various of these medications did help with psychosis, but not the course of the disease. Side effect profile in those who got the drug had more deaths compared to the placebo group with a 60% increased risk, mostly due to stroke or cardiovascular disease, which led to the black box warning. Families need to weigh the risk to the patient and caregiver’s health against the risk of using these meds.