“Practical Strategies for Care in LBD and FTD” – Webinar notes

“Practical Strategies for Care in LBD and FTD” – Webinar notes

In a webinar hosted last month by the Lewy Body Dementia Association (LBDA), three experts gathered to discuss various aspects of Lewy body dementia (LBD) and frontotemporal degeneration (FTD).  LBD is also called Parkinson’s disease dementia.  And frontotemporal degeneration includes two atypical parkinsonism disorders — progressive supranuclear palsy and corticobasal degeneration. 

Panelists discussed the scientific basis for behavior changes in LBD and FTD as well as caregiving strategies and compassionate communication techniques. While the first two speakers (Pamela Corsentino, MS, and Sharon S. Denny, MA) describe the clinical features of each respective disease, the final speaker (Jennifer Pilcher, Ph.D.) concludes with practical communication methods to engage in an emotionally meaningful way.

Pamela Corsentino, MS, is a gerontologist and a licensed professional counselor. She is also the Director of Support Services at the Lewy Body Dementia Association, and may be reached at pcorsentino@lbda.org.

Sharon S. Denny, MA is the Senior Director of Programs at The Association for Frontotemporal Degeneration, where she leads the strategic development of support and education for people with FTD, their families, and healthcare professionals. Questions or comments can be sent to sdenny@theaftd.org.

Jennifer Pilcher, Ph.D, has a doctorate in gerontology and has had career-long experience working with people with dementia and their families. She is the founder of Clear Guidance, LLC, a care management practice that specializes in atypical dementias including FTD and LBD. You can reach her at jenniferpilcher@clearguidance.org.

The one-hour webinar may be accessed here.

Slides used in the webinar can be accessed here.

Note: you will need to register with your name and email address to view the webinar.

For those who would rather read than watch, my notes to the webinar are below.

— Cassandra Irizarry

Practical Strategies for Care in Lewy Body Dementia and Frontotemporal Degeneration 

September 26, 2020

Webinar hosted by the Lewy Body Dementia Association

Summary by Cassandra Irizarry, Stanford Parkinson’s Community Outreach

Understanding Behavior Challenges in Lewy Body Dementia (LBD)

Pamela Corsentino discusses common behavior changes in LBD, their potential causes, and helpful therapeutic approaches. Among the topics she discusses are sleep disorders, cognitive symptoms, and hallucinations. 

How is Lewy LBD defined?

LBD is a progressive brain disorder that features abnormal protein deposits, called Lewy bodies, in the brain. LBD is an umbrella term that includes Parkinson’s dementia (PDD) and dementia with Lewy bodies (DLB). The difference in diagnosis based on the timing of symptoms:  If you present with cognitive symptoms at the same time or one year prior to PD symptoms, then it’s referred to as DLB.

  • Prevalence: 1.4 million (probably an underestimate)
  • Age of onset: typically 50+ but can occur earlier

Sleep disorders in LBD

  • Insomnia
  • Restless leg syndrome
  • REM Sleep Behavior Disorder (RBD). 80% of those with LBD have RBD.  Can occur 15-20 years before the onset of cognitive symptoms

LBD symptoms: Reactions to Medications

  • Be aware of medication sensitivity- traditional antipsychotic medications may be contraindicated for individuals living with LBD. Example: haloperidol and thioridazine are sometimes prescribed for individuals with Alzheimer’s disease and other forms of dementia to control behavioral symptoms
  • LBD affects an individual’s brain differently than other dementias.  As a result, these medications can cause severe worsening of movement and a potentially fatal condition known as Neuroleptic Malignant Syndrome (NMS).  NMS causes severe fever and muscle rigidity and breakdown that can lead to kidney failure. Important to be aware of medication someone is getting when diagnosed- many get their diagnosis based on medication reaction
  • “The double effect:” Carbidopa-levodopa can be used to treat parkinsonism but has potential risk for the side effect of hallucinations. Antipsychotics can be used to treat hallucinations and other behavior symptoms, but can cause increased confusion and parkinsonism in LBD.

LBD Cognitive Symptoms

  • Forgetfulness (due to lack of focus/attention rather than memory)
  • Difficulty problem-solving or analytical thinking (executive function)
  • Difficulty planning or keeping track of sequences (poor multitasking)
  • Disorganized speech and conversation
  • Visual tracking and attention
  • Difficulty with sense of direction of spatial relationships between objects
  • Trouble with verbal and motor initiation

LBD Fluctuations

Behavioral symptoms of LBD are commonly characterized by fluctuations in mood and concentration. Some examples include:

  • “Moments of clarity” or “showtime”
  • Unexplained episodes of confusion
  • Periods of “zoning out”
  • Excessive daytime sleepiness

Illusions/Hallucinations in LBD

Also common in LBD. An example of illusions/misperception is a coat rack in the corner appearing to be a man; a hallucination may involve carrying on a conversation with this “man.”


  • Are predominantly visual in nature; very vivid
  • Occur early in the course of the disease
  • May or may not be frightening to patients
  • Are often complex.  Typically of little people, children, or furry animals. 
  • Often personal in nature based on life experiences
  • May or may not have an auditory component
  • People are often aware of their hallucinations and can talk about them

Common delusions in LBD

  • Capgras: Familiar people are thought to be identical or near-identical imposters
  • Fregoli: Strangers are familiar people who repeatedly change their appearance or form
  • Phantom Border: Belief that other people are living in the home
  • Othello: Jealousy- usually spousal infidelity
  • Reduplicative paramnesia: A place simultaneously exists in 2 or more physical locations
  • Ekbom: Infestation by insects or parasites

Treating Psychosis, Hallucinations, and Anxiety

A step-by-step process:

  • Rule out any contributing physical factors
  • Review medications that that may be reduced or stopped
  • Identify environmental or social factors
  • Use non-pharmacological approaches first
  • Consider the use of an antidepressant as first-line pharmacotherapy
  • Treat conservatively with atypical antipsychotic medication and monitor closely for possible severe reactions

Helpful interventions 

  • Physical therapy
  • Occupational therapy
  • Speech therapy
  • Counseling:  especially helpful because people are often aware of their delusions

Understanding Behavior Changes in Frontotemporal Degeneration (FTD)

In this portion of the webinar, Sharon S. Denny gives a detailed overview of the cognitive and behavioral symptoms associated with FTD, as well as care and treatment strategies.

What is frontotemporal degeneration?
FTD represents a group of brain disorders caused by progressive degeneration of the frontal and temporal lobes, affecting a person’s behavior, language, and movement skills.

  • It is the most common dementia affecting people under age 60, and the average age of onset is 57 (20-80)
  • FTD is commonly misdiagnosed as a psychiatric disorder or Parkinson’s
  • There are no FDA approved treatments- all treatment is symptomatic

FTD is a group of complex disorders:

  • ALS-frontotemporal spectrum disorder
  • Behavioral variant FTD
  • svPAA semantic variant
  • naPPA nonfluent agrammatic variant
  • IvPPA logopenic variant
  • Corticobasal syndrome
  • Progressive supranuclear palsy

Symptoms are diverse:

Each person’s experience is as individual as they are.

  • Rates of progression are variable
  • The average life expectancy post-diagnosis is 7-13 years (range: 2-20+)
  • A clinical diagnosis is made is based on the earliest, most prominent symptoms

Cognitive symptoms in FTD:

  • Difficulty sustaining and redirecting attention:  Can’t watch movies, read, converse at length; appear purposeless and bored (apathetic)
  • Difficulty making and carrying out plans:
    • At home: trouble paying bills, cooking, shopping, grooming
    • At work: trouble with planning, organization, task completion, and mental flexibility; difficulty dealing with feedback or correction
  • Difficulty in reasoning:  May exhibit mental rigidity or insist on having things a certain way

FTD Behavioral Symptoms:

  • Behavioral disinhibition:  Socially inappropriate behaviors; Loss of manners or decorum; Impulsive, rash, careless actions
  • Apathy
  • Loss of empathy
  • Impaired judgment, foresight, reasoning

Compulsive behaviors:

  • Compulsive behaviors – verbal or motor eg: hand rubbing, clapping, counting aloud, humming, catchphrases, lip-smacking
  • Complex repetitive motor routines- walking a fixed route, collecting & hoarding objects, counting money, checking and rituals involving unusual toileting and hygiene behavior
  • Eating changes – Narrow food preferences, eg: eating only ice cream; eating to excess; taking food off another’s plate 
  • Loss of self-awareness or denial of symptoms (anosognosia): no recognition of behavior changes or their effect 

Many behaviors are resultant of changes to the “social brain:”

  • Loss of interest in family, friends
  • Increase in self-centered actions
  • Impulsive actions
  • Violation of interpersonal space
  • Driven to touch or use items in their view
  • Delusion

These highly individual symptoms and care management challenges such as:

  • A lack of clinical care guidelines and physician awareness in general
  • No medications for cognitive symptoms
  • Increased care burden due to behavior issues that cannot be medically treated
  • Impairments not visible

point towards solutions found only in a personalized approach to care.

Non-pharmacological interventions are most effective:

  • Partner with family members- you need a true team approach
  • In FTD, memory remains intact- meaning the person can be aware of their condition and symptoms

Practical Strategies of Care in Lewy Body Dementia and FTD

In the third and final portion of the webinar, Jennifer Pilcher shares methods for communicating effectively and compassionately with friends and loved ones with LBD/FTD. Her approach advocates for the usage of mood to understand, communicate, and reinforce an individual’s universal psychosocial and emotional needs.

Why does using mood work?

Even those with advanced dementia can relate emotionally- what is lost is not the emotion, but the insight into the trigger of a particular emotional reaction.

Those with LBD/FTD can lack the capacity to rationalize or accurately access a threat, but their brain still has an “alarm system:” the amygdala. The amygdala is the brain’s “storehouse of emotions” and gives us the ability to respond, perceive, evoke, or hold an emotion.

We can care better using a better understanding of human behavior:

  • Basic human needs are universal:
    • Love and belonging (feeling that people like, appreciate, and are on the same team as you)
    • Power (feeling like you have an influence on the world)
    • Freedom (having a sense of autonomy and choice)
  • If a person senses that any of these needs are threatened, their brain may trigger an adrenal response
  • If we find ways to meet these needs in people with FTD,, we will find better ways to communicate and keep calm.

Tools for Understanding a Person’s Behavior:

See yourself as a “private investigator” of sorts, and clearly identify the problem:

  • Describe the problem or behavior you are seeing in as much detail as possible 
  • Think about what was happening at the time when the behavior occurred: what were you doing? What was the person doing?
  • Try to identify triggers (environmental or otherwise) for the behavior
  • Understand a person’s motivations
  • Identify potential unfulfilled needs

Ask relevant, meaningful questions:

  • What is the history, background of this person? 
  • What need are they trying to fill? 
  • What could they be feeling? 
  • What are the triggers of this behavior? 
  • Is there a discernable pattern? 
  • What are the motivations of the person? 
  • Is this behavior new or an escalation of an existing problem? 
  • Could there be a visuospatial reasoning issue?
  • How does this person’s life experience affect/play into their behavior?

Behavior Tracking Tools

  • “ABC chart:” Antecedent, behavior, consequence
Date/time the behavior occurredActivity going on when behavior occurredWhat happened right before the behavior that may have triggered the behaviorWhat the behavior looked likeWhat happened as a result of the behavior
  • Bowel, bladder, sleep, and medication side effect charts are also helpful means of recording information

Tools for Effective Communication

  • Validate their feelings:
    • Reflect  
    • Observe expressed emotion  
    • Acknowledge the discomfort the emotion is causing  
    • This may be the only step you have to take, but it is crucial for success
  • Prepare your approach:
    • Identify yourself  
    • Approach from front  
    • Be aware of your body language, level of eye contact, and tone of voice  
    • Start interacting casually before trying to accomplish anything: spend 5 to save 20
  • If there are language barriers,
    •  Utilize non-verbal communication, humor, and/or relaxation techniques 
    • Use Communication aids: picture book, text to speech  
    • Be patient, give time to respond to questions or directions, don’t rush, don’t offer words or finish sentences unless given permission  
  • Simplify your language:
    • Don’t rationalize –may not be capable  
    • Don’t talk too much, makes you sound nervous – can lead to paranoia  
    • Use simple words, not euphemisms or slang, use concrete statements
    • Avoid questions  Use body language as alternative
  • Create scenarios that highlight the person’s sense of choice and control
    • Limit questions to 3 options  
    • Limit to serial yes/no ( ex: Would you like eggs? Would you like toast?)
    •  Allow refusal without arguing
  • If the person is in no state to calmly communicate,
    • Quit and come back later  
    • Pay close attention to person’s body language and emotional state 
    • Wait for adrenal reaction to subside (15-20 minutes)
  • Redirect their attention: 
    • Draw attention to something in the present, that the person can see  
    • Talk about something the person enjoys  
    • Use a food or activity
  • Use the “Habilitation Approach” 
    • Enter the client’s reality  
    • Don’t argue or challenge their reality, perception, or statements  
    • Avoid questioning or quizzing 
    • GOAL: use mood to bring about a person’s ability to live to their potential
  • Create positive emotions
    • Use a sense of humor, empathy, music appreciation, and sensory experiences to engage someone’s ability to be in the moment
  • Establish a routine

You cannot expect the person to change. Instead, what about the routine, schedule, or environment can we change to accommodate this person and avoid triggers?

What can we do to proactively set the person at ease? 

  • Love and belonging – more likely to say yes to people we like  
  • Common, compliment, collaborate  
  • Change the physical environment to provide cues  
  • Don’t attempt to change their mood while you’re in a bad one- destress yourself first, then return to the situation