A Quick Way to Know if LBD is Likely

It is not unusual for a person to receive several diagnoses before they are finally diagnosed with Lewy body dementia (LBD), resulting in months, and sometimes, years between recognition of a problem and a diagnosis that fits. Primary doctors still may not recognize the cardinal differences between LBD and Alzheimer's. Even some neurologists aren't up to date on this disease, which Dr. James Galvin calls "the most common disease you've never heard of." Dr. Galvin has been working with LBD for a very long time. He was already a known expert on the subject when he joined Jim (Whitworth) on the LBDA board in 2008. We were honored when he offered to write the back page review of our book, A Caregiver's Guide to Lewy Body Dementia, published in 2010.

After these many years of research combined with clinical practice, Dr. Galvin has come up a very simple, but surprisingly accurate, list of ten questions that help physicians discriminate between Alzheimer's and LBD. When compared to standard tests, Galvin's diagnostic test shows the difference between Alzheimer's and LBD with a whopping 98.6% accuracy. Even imaging tests seldom do that well!

Dr. Galvin warns that a screening test, in itself, is insufficient for dementia diagnosis, but says that this test can suggest a strong possibility that LBD is present. The beauty of this test is that anyone can do it, including caregivers. While a formal diagnosis of LBD should always be done by a qualified physician, this test can provide a caregiver with information to take to the doctor and a basis for questions to ask. And hopefully, it will decrease the time before an accurate diagnosis.

The Lewy Body Dementia Diagnosis Questionnaire

Allow 1 point for each of the following that has occurred at least three times over the past six months?

1. Have slowness in initiating and maintaining movement or have frequent hesitations or pauses during movement?
2. Have rigidity (with or without cogwheeling) on passive range of motion in any of the 4 extremities?
3. Have a loss of postural stability (balance) with or without frequent falls?
4. Have a tremor at rest in any of the 4 extremities or head?
5. Have excessive daytime sleepiness and/or seem drowsy and lethargic when awake?
6. Have episodes of illogical thinking or incoherent, random thoughts?
7. Have frequent staring spells or periods of blank looks?
8. Have visual hallucinations (see things not really there)?
9. Appear to act out his/her dreams (kick, punch, thrash, shout or scream)?
10. Have orthostatic hypotension or other signs of autonomic insufficiency?

Add up your score. A total of three or more points indicates a very high likelihood of Lewy Body Dementia.

Copyright 2015 The Lewy Body Composite Risk Score, James E. Galvin

If you do this at home and take it to your doctor, consider bringing along your journal with dates and descriptions of events such as hallucinations, to support your answers.

Some of the words in this test are fairly clinical--it's for doctors after all. Here are some definitions:

• rigidity: Stiff or inflexible muscles
• cogwheeling: a tremor that accompanies rigidity, usually characterized by a "stop and go effect" during range of motion
• tremor at rest: a tremor that appears only when the extremity is not being used.
• passive range of motion: when a person's extremities are moved through range of motion exercises by another person.
• letharagic: sluggish, apathetic
• incoherent: unclear, confusing, disjointed
• orthostatic hypotension: low blood pressure on rising
• autonomic insufficiency: ineffective functioning of one's automatic functions including digestion and elimination

For 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

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