On February 10th and 11th Dementia Alliance of North Carolina hosted the first Dr. Daniel Kaufer Memorial Caregiver Conference.  The theme of the conference was Behaviors: Awareness, Attitude (Day 1), and Action (Day 2).  I attended three sessions on Day 1.  These notes have relevance for those dealing with Parkinson’s Disease and dementia.

These notes are on the first session, “Behavioral Symptoms in Dementia” with Dr. Trey Batemen, a neurologist at Wake Forest School of Medicine. He broke down the behavioral symptoms in dementia into different categories including emotional dysregulation (which includes depression, anxiety, elation, apathy), impulse control (which includes agitation/aggression, irritability, motor behaviors, disinhibition), psychosis (delusions, hallucinations), nighttime behaviors and appetite changes. Common medication used to treat these symptoms are antidepressants, antipsychotics, cholinesterase inhibitors, melatonin, Memantine, and Stimulants. 

To view the session, visit the Dementia Alliance of NC YouTube channel.

The Stanford Parkinson’s Community Outreach Project has more information about cognitive changes in PD here and here.

Please see below for notes on behavioral symptoms in dementia.

Regards, 

– Joëlle Kuehn

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“Behavioral Symptoms in Dementia”

Speaker: Trey Batemen, MD, MPH, Assistant Professor of Neurology and Psychiatry of Wake Forest School of Medicine

Webinar Host: Dementia Alliance of North Carolina 

Webinar Date: February 10, 2021 

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

Cognitive Decline:

• Normal aging: changes that are expected to occur with aging (skin, muscles, cognition)

• Mild cognitive impairment (MCI) 
  • Cognitive changes that become concerning to patient/others
  • Low score on memory/visual-spatial tests
  • No major decline or problems in daily activities
  • Some outcomes: 
    • Some people get better 
    • Some people have a stable course, don’t get better, don’t get worse
    • It can get worse, and MCI can be thought of as a pre-dementia step

• Dementia: 
  • Dementia is a description of what someone is experiencing, and it doesn’t tell you what is causing it (lots of causes, Alzheimer’s is most common)
  • Cognitive changes concerning to patients and others
  • Low score on tests
  • Decline and difficulty in daily activities
  • Severity: 
    • Mild dementia: instrumental activities of daily living (ADLs) necessary to independent living (driving, cooking, cleaning, finances) are impacted
    • Moderate: basic ADLs (physical needs) are impacted: feeding, dressing, personal hygiene 
    • Severe: someone is fully dependent for all of their daily activities

Behavior: 

• What others do that we can observe and measure
• We focus on challenging behaviors – which are behaviors that keep people from successfully participating in their daily life and living in their environment
• Behaviors often serve a purpose and can communicate a need
• Common synonyms for behavioral symptoms: behavioral and psychological symptoms of dementia (BPSD), neuropsychiatric symptoms (NPS)

Behavioral Symptoms: 

Emotional dysregulation: depression, anxiety, elation, apathy

• Depression: 
  • Down, depressed, hopeless feelings
  • Persistent, not just a few hours
  • Persistent decline and decreased mood
• Anxiety
  • Emotions
  • Feeling excessively tense or nervous
  • Excessive worry
• Elation: 
  • Appear to act or feel too good
  • Excessively happy, talks big or grandiose
  • Childish, laughs inappropriately 
• Apathy:
  • Decrease in interest or motivation
  • Less interested in usual activities
  • Less spontaneous, less likely to initiate conversation
  • Can occur with or without depression (not the same as depression, it is important to find the distinction to be able to treat more accurately)

Impulse control: Agitation/aggression, irritability, motor behaviors, disinhibition

• Agitation
  • Excessive motor activity, verbal or physical aggression
  • Resistance to care – especially personal care activities 
• Irritability:
  • Cranky and impatient, difficulty coping
  • Rapid changes in mood
  • Bad temper
  • Short fuse – “flies off the handle” easily
• Motor behaviors
  • Similar to agitation in the excessive motor activity
  • Purposeless motor activity
  • Repetitive activities such as handling buttons, wrapping string, pacing
• Disinhibition: 
  • Socially inappropriate / acting impulsively
    • Excessively familiar with strangers
    • Insensitive or hurtful remarks
    • Talking openly with strangers about private matters

Psychosis: delusions, hallucinations

• Delusions:
  • Fixed false beliefs – can’t talk someone out of it, nothing you say will change their mind
  • Delusions of stealing, or planning to harm them, abandonment, infidelity
  • Misidentifies spouse or child
• Hallucinations:
  • Perceives a thing that is not there
    • Hearing voices, talking to people not there
    • sees/feels/smells things that are not there
  • Can be simple (shadows) or complex (children that are not there)
  • They can know they are not real, and are just hallucinations, or they can also fully believe they are real

Others:

• Nighttime behaviors
  • Sleeping too much, too little
  • Acting out dreams
• Appetite/Eating
  • Eating too much, too little
  • Change in food preferences

Note: Many of the symptoms overlap. It is most helpful for medical people to just get your description because it is the medical professionals job to decide if it is delusions or false memory, anxiety or motor agitation, apathy or depression etc. 

Symptoms are measured by standardized questionnaires to be able to get a thorough assessment and be able to track it over time. It is a fancy version of saying “how is someone doing” 

Common Forms of Dementia:

• Alzheimer’s disease and vascular dementia
  • Two most common forms of dementia
  • Are comorbid and behavioral profiles are similar
  • Majority of patients will experience a clinically significant symptom
    • In early stages, the symptom is: Depression, anxiety, apathy, irritability, agitation
    • Moderate to severe: delusions/hallucinations, sleep and appetite changes, agitation becomes very common

• Lewy body dementias
  • 2nd most common neurodegenerative dementia 
    • Note: vascular is not neurodegenerative so that is why it is not #2
  • Terminology is confusing
    • Lewy body disease: brain disease that has pathologic features called lewy bodies
      • Refers to: Parkinson’s disease (PD) or Lewy body dementia (LBD)
    • Lewy body dementia (LBD)
      • Parkinson’s Disease Dementia (PDD): dementia in well-established PD. Well established  = after 1 year of diagnosis
      • Dementia with Lewy Bodies (DLB): dementia develops concurrently or prior to parkinsonism
    • There is a lot of overlap, but it comes down to when did the cognitive changes occur in comparison to motor changes (such as slowness and stiffness)
  • Behavioral presentations are common:
    • Hallucinations, delusions, anxiety, sleep, irritability, apathy
    • Early psychosis compared to Alzheimer’s

• Frontotemporal dementia (FTD)
  • More challenging behaviors early on compared to Alzheimer’s disease and vascular dementia
  • Apathy is very common: >75%
  • Appetite changes, disinhibition, motor activity, agitation, anxiety are common in 40-45% 
  • 2 variants: behavioral and language
    • Behavioral variant
      • Loss of sympathy, apathy, excessive cravings, ritualistic impulsive behaviors, socially inappropriate
    • Language variants:
      • 2 tyles, each with prominent early language changes 
      • Less behavioral
  • Psychosis is rate, but is likely in some genetic variants
    • Compared to DLB where it is common

Always ask – do we need to treat the behavior? 

• Not every behavior needs to be treated
• If: not harmful, infrequent, easily redirected, does not contribute to distress
• medications may not be effective 
• Ex: verbal aggression
  • If it is pain, psychosis, depression it can be treated with medication
  • If it is unmet care needs, boredom, powerlessness, overstimulation or impulsivity, they won’t respond to a medication

First thing the doctor will do when seeing a behavior is present and significant is how much is safety an issue. If safety is an issue it must be treated more promptly and aggressively. There is no time to wait for a medication that takes 4-8 weeks to help. They will also consider physical causes, especially when the changes are sudden. Some physical causes could be infection, pain, sensory or sleep problems, or possibly medications. 

Medications:

Anticholinergic medications

• There are a lot of drugs under this category
• Sometimes the benefits outweigh the harms but it is important to consider the harms
• Impacts the cholinergic system 
• They can cause confusion and worsening of memory or other behaviors
• Examples of worst offenders: – helpful for some issues but can cause severe problems for people who experience behavioral symptoms
  •  Over the counter antihistamines – Diphenhydramine: (Benadryl, Nyquil)
    • Better: Trazodone for sleep and Claritin for allergies  
  • Medications for bladder problems – Oxybutynin 
    • Better to use Myrbetriq
  • Sleep medications (other than melatonin) – diphenhydramine or Doxylamine (Nyquil), benzodiazepines
    • Better to use; melatonin, buspar
    • Benzodiazepines and Ambien (zolpidem) are almost always a bad idea because they contribute to falls, cognitive worsening and pneumonia
    • Some exceptions such as for short-term crippling anxiety and panic
    • If there was chronic use of these, it often takes a long time to get off safely
  • Antipsychotics – serious risk vs. reward discussions needed, will use some over others because some have more anticholinergic properties than others
  • Motion sickness, dizziness, nausea: dimenhydrinate (dramamine)
    • Better to use vestibular rehab
  • Muscle relaxers 
    • Better to use heat or physical therapy
  • Anti-spasmodics (stomach cramps) – hyoscyamine, dicyclomine
    • Better to use dietary modifications or good bowel regimen

Approach to treatment:

1. Safety and determine if treatment is necessary
2. Reversible causes such as medications 
3. Are there non-medication options that can be used (redirection, change activity)
4. Then decide if need medications

Common Medications used:

• Antidepressants
  • Used for: agitation, depression, anxiety, apathy
• Antipsychotics
  • They do increase the risk of all cause mortality and risk of cardiovascular events such as heart attack and stroke, but sometimes risk is worth taking to improve quality of life
  • Used for: psychosis, aggression, sometimes agitation, severe anxiety
  • Want to use lowest effective dose for shortest amount of time
• Cholinesterase inhibitors
  • In LBD it is used to treat psychosis, but is avoided in FTD
  • Can help with an SSRI for depression
  • Can help for apathy
• Melatonin
  • Used for: insomnia, REM behavior disorder
• Namenda (Memantine) 
  • Mixed evidence but can reduce escalation of antipsychotic dose
  • Used for: Agitation, aggression, depression, anxiety
• Stimulants
  • Methylphenidate (Ritalin)
    • Used with SSRI to help depression and severe apathy
    • In LBD can be severe daytime somnolence (sleepiness), so stimulants are necessary to keep them aware

Sexually inappropriate behavior: 

• Two types
  • Intimacy seeking (even inappropriate)
  • Disinhibited (exposing oneself, in a way that is also inappropriate)
• Treatment is difficult because there is an ethical need to balance normal sexual desires that don’t go away just because someone has dementia and what the expectation is for carers and family members for what is or isn’t appropriate to happen
  • Difficult especially in residential care
• Non-pharm first: re-direct, clothes that open in back so they cannot disrobe, finding alternative activities to keep someone stimulated in case under-stimulation is the reason
• To use medication it is important to figure out what is causing it

When can medical professionals help?

• When symptoms are disruptive in life or when you feel like you’re needing help
• Can help monitor response to symptoms – depends on medication and target behavior
  • Rely on data outside of treating those with dementia
  • The gold standard boils down to patient and informant (carer) report
• Professionals also care for the caregiver – have to take care of yourself before you take care of others
  • Sleep is important
• Shared decision making is important (consult caregiver, patient, doctor)
• Know it may take several medication trials to find the effective combination for you

Question & Answer: 

Question: How do you measure executive function when you are evaluating a person for dementia?

Answer: They will be measured on pencil and paper types of tests. History is important to get a sense of executive dysfunction but in the clinic it would be tested, or for new patients a longer neuropsychological assessment. 

Question: Is there a suggested way to find help in their local area if they don’t live near your clinic?

Answer: I don’t know of a good registry of dementia specialists but any neurologist should be comfortable with more common forms of dementia but some aren’t comfortable with behavioral presentations so they’re less confident treating those symptoms. If there is a geriatric psychiatrist in the area it could be helpful. 

Question: What if a neurologist is not familiar with lewy body dementia (even though it isn’t uncommon)?

Answer: The lewy body disease association (lbda.org) is helpful to educate people about lewy body dementia, so if you have a clinician who is open and willing to accept that information it is a great resource. 

Question: Can delusions sometimes go away on their own?

Answer: They can. They can fluctuate and if they’re mild and not bothersome you don’t have to treat them and may go away on their own. But if they are severe it does require treatment, and it can be a trial and error to find the right one.

Question: Is there any pattern in the brain where lewy bodies emerge or is it random?

Answer: There are patterns where it emerges in the brain. In Parkinson’s disease it starts in the lower parts of the brain and then spreads upward to the cortex, and if it’s dementia with lewy bodies it can start in the higher cognitive functions of the brain and progresses downward. Having said that, in lewy body dementia, the atrophy patterns are not the thing that helps on imaging as much. 

Question: Is it ok to be treated by the primary care doctor? Is there something that triggers a referral to a specialist?

Answer: It is common to be treated by a primary care doctor and in many cases it is appropriate. It is also impossible to have everyone see subspecialists due to a shortage of specialists.

Question: Is autopsy still the definitive way to get a diagnosis?

Answer: Yes but it is difficult to get an autopsy diagnosis. There can be biomarkers but it requires a lumbar puncture but it isn’t recommended because it doesn’t provide a benefit unless someone wants to know with a high certainty which kind of dementia they have.