Category Archives: General Information about LBD

Lewy Body Dementia 3 Stage System




A little over a decade ago, a group of caregivers for spouses with Lewy Body Dementia put together a list of symptoms and attempted to break the progression of LBD into 7 stages. (That list can be found here) For years, it has stood as the only available staging document for caregivers to use as the medical profession has not attempted to tackle such a task due to the complexity of the illness. While the caregivers’ list has been very helpful for giving families an idea of the types of symptoms to expect and when to expect them, it was often useless to those whose loved ones did not follow the progression of symptoms in the same order. Many caregivers complained that their loved ones would have symptoms from stage one and stage four at the same time, for example, or would bounce back and forth between stages.


In 2016, Very released an article simplifying the progression into three basic stages (That article can be found here) They compiled this based on input from several reputable sources which can be seen at the bottom of the article. For me, this system made much more sense and fitted my husband (and every other person I’ve known with LBD) much better. Read the rest of this entry

Caregiver survey


What do the numbers say_
Ever since my husband was diagnosed with Lewy Body Dementia in 2011, I’ve searched for information pertaining to life expectancy and speed of progression. My reasons were multifaceted. First, I’m one of those persons who needs to have a plan. I can’t blindly go from day to day, hoping things will work out for the best. Some might call me a control freak and maybe I am, but I prefer to think of myself as a pragmatist. I’m not wealthy and I know care can cost a great deal. I needed to know what to expect and how quickly the disease could progress so I could make financial decisions for our future. Read the rest of this entry

Things to consider when using assisted care


Tips for Assisted Care Placement
Lewy Warriors welcomes guest blogger Jeff Maruna today. Jeff is one of three moderators for an on-line
yahoo caregivers group devoted specifically to those whose spouses have been diagnosed with LBD. was the first caregiver group I joined and the information and
support I received has helped me enormously in my journey. With Jeff’s permission, I stole this post from the group after one of the members had voiced her concern about placing her husband in a care facility.

Jeff and Kathy’s story:

Two years ago, I made the decision to place my wife Kathy in a care home. Read the rest of this entry

Quick Lewy Body Test


Does your loved one have Lewy Body Dementia_
Galvin’s Lewy Body Composite Risk Score

The Lewy Body Composite Risk Score is a quick test developed by Dr. James E. Galvin for the purpose of giving doctors a three minute assessment to use if they suspect Lewy Body Dementia with a patient.

The test is scored on a continuous scale with a range of 0 to 10. “You simply check present or not present and add up the number of yeses, and three or more yeses suggests that Lewy bodies are the underlying cause of the dementing process,” said Dr. Galvin.


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?

*3 or more yes marks means there is a high likelihood of Lewy Body Dementia

If you are not sure about #10, click on the link and it’ll take you to an article to explain that aspect more clearly.

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

For a more detailed explanation, click here


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Phases of Lewy Body Disorder


Stages of

A common concern for caregivers of loved ones with Lewy Body Disease revolves around the issue of progression. It’s necessary to know what to expect in order to know how to prepare for future care. While everyone with LBD progresses differently, there are still certain markers experienced by most that can be used as a guideline for progression. The following is a document developed by the members of the online caregiver group,

June 2007

Facilitated by Sue Lewis of West Virginia, edited by June Christensen, Kansas

Please be aware that the following piece is based on the discussions and observations of the LBD caring spouses. It is in no way based on research or science and is not intended to represent research or science. Read the rest of this entry