Decoding the DLB Diagnostic Criteria, #2: Symptoms

The criteria for diagnosing dementia with Lewy bodies was written for doctors, not stressed-out care partners. Therefore, this series of blogs attempts to decode it. The original language is presented in italics, followed by definitions, a plain English version of the statement and a reference where you can find more information.

Last week's blog noted that a certain amount of cognitive decline was essential for the diagnosis. If you haven't read it, please go back and do so before you go on. It's all connected! And please understand that this information is for educational purposes only! If you recognized these symptoms in a loved one who hasn't been diagnosed yet, a doctor's visit needs to be your next step!

Core Clinical Features
(NOTE: The first 3 typically occur early and may persist throughout the course)

• clinical features: symptoms
• occur early: appear prior to obvious cognitive symptoms
• persist: last to the end

In plain English: Three lasting symptoms that tend to appear early  plus one which also lasts once it starts.

Core Symptom #1. Fluctuating cognition with pronounced variations in attention and alertness.

• cognition: mental ability
• attention: the ability to maintain focus over time

In plain English: Mental function that varies in the ability to focus and be alert. More about this.

Core Symptoms #2. Recurrent visual hallucinations that are typically well formed and detailed.

• recurrent: appear more than once.
• visual hallucinations: seeing something that isn't really there.
• well-formed and detailed: strong appearance of reality 

In plain English: Visual hallucinations that feel very real and can appear over and over. More about these and other visual problems.

Core Symptoms #3. REM sleep behavior disorder (RBD) which may precede cognitive decline.

• REM (rapid eye movement) sleep: the sleep cycle when dreams occur and a person's limbs are normally so relaxed (paralyzed) that they cannot move.
• RBD: When a person physically acts out their dreams while asleep. 

In plain English: The person physically acts out their dreams and may start doing so prior to loss of cognitive abilities. More about RBD. (Also called "Active Dreams.")

Core Symptoms #4. One or more spontaneous cardinal feature of parkinsonism – these are bradykinesia, rest tremor, or rigidity.

• Parkinsonism: Movement symptoms caused by something other than Parkinson's. Often caused by antipsychotic drugs. More about the difference between Parkinson's and Parkinsonism.
• spontaneous cardinal feature: A major clinical symptom that occurs without the use of antipsychotic drugs
• antipsychotic drugs: behavior management drugs that are usually anticholinergic--i.e., drugs that trigger LBD's sensitivity issues. More about these drugs. 
• bradykinesia: slowness of movement and the impaired ability to move the body swiftly on command.
• rest tremor: a tremor that only shows up when a muscle is relaxed.
• rigidity: Stiffness and inflexibility of the limbs
• postural instability: unstable while standing.

In plain English: One or more of the following in the absence of antipsychotic drugs: Slowness of movement, difficulty moving swiftly on command, tremors while at rest and rigidity.

Supportive Clinical Features

This next group of symptoms also occur regularly with other diseases. However, their presence, while not as clearly indicative, is still quite helpful in making a diagnosis. This section is just a long list in the DLB diagnosis criteria but I've added a bit about each symptom. Go to our books for more information:

• Severe sensitivity to antipsychotic agents: Although not a core symptom, this is still very important because people living with DLB are often sensitive to the very drugs they receive to treat symptoms involving behavior management, incontinence or even movement.
• postural instability: a Parkinsonism symptom.
• repeated falls: usually related to movement issues, but can also be related to poor visual perceptions.
• severe autonomic dysfunction: The autonomic nervous system controls the automatic body systems such as such as heart beat, blood pressure, breathing, and bladder control. Includes the following symptoms and more:
• syncope or other transient episodes of unresponsiveness: a loss of consciousness, usually related to a fall in blood pressure.
• constipation: a backup of processed food in bowel caused at least in part by an ineffectively functioning digestive system.
• orthostatic hypotension: Low blood pressure on rising
• urinary incontinence: Poor bladder and sphincter control.
• hypersomnia: Excessive daytime sleeping.
• hyposmia: Loss of smell.
• hallucinations in other modalities: All senses can foster hallucinations, but audio ones are the next most common after visual ones.
• systematized delusions: Well-structured (systematized) dramas built around false beliefs (delusions).
• apathy: The inability to respond emotionally. Lack of interest, enthusiasm or concern.
• anxiety: Restlessness, worry, nervousness, the feeling that something terrible is going to happen.
• depression: Feeling sad, hopeless, without energy.

Next week: On to the biomarkers!

In the meantime, download this Patient Checklist for Diagnostic Symptoms. You can fill it out and take it to your loved one's doctor the next time you go. (If you tried to download it from the 2017 criteria last week, this is a different address. It works!)

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.