Category Archives: General Information about LBD

Lewy Body Dementia 3 Stage System

Standard

 

a-simplified-staging-system-for

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 Well.com 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.

 

According to this article there are basically three stages: (I expanded their explanation by adding examples of symptoms and including information from other sources, including interactions with hundreds of caregivers)

Early stage: Behavioral problems

At the beginning of the illness, behavioral issues are usually the most problematic. The individual will typically experience depression, hallucinations, delusions, REM sleep disorder, paranoia, and confusion. They may also become aggressive, angry, and undergo personality changes. While not all will experience all of these symptoms, most will experience at least some of them. (For example, my husband never became aggressive) It is during this phase the diagnosis is usually made. The individual may either have no movement issues at this time, or very minor ones like mild stiffness or tremor.

 

Middle Stage: Movement problems

During the Middle Stage of the illness, the behavioral issues tend to level off and movement issues arise.  This is not to say the behavioral issues stop, but they don’t seem to progress as rapidly as they did in the beginning and in some cases, actually improve. It is during this stage the muscular or Parkinson’s-like symptoms develop. The individual may lose control of bladder/bowels. They begin stumbling/falling, and may develop swallowing difficulties. The Lewy Lean might become evident. By the end of this stage, they will likely need help with most if not all of their ADLs (activities of daily living) and will often need placement in a care facility or the caregiver will need to hire home health care aides.

 

Late/final Stage: increasing weakness

At this point, the individual becomes weaker. They will likely need a wheelchair for most transports, will begin dropping water glasses etc. They reach the point where they can no longer feed themselves. The weakness continues until they eventually succumb to the disease. Often, they develop an infection, pneumonia, or some other illness that will end their life, however some simply shut down. (more on that can be found here) It is rare for this stage to last more than a year, however some have been known to be bedridden for two years or so. *Remember all of these progressions are gradual! They don’t simply wake up one day unable to feed themselves ever again. They might need help one day, but not the next, however eventually they need help each time.

 

Some things to consider:

  • It is impossible to diagnose Lewy Body Dementia without an autopsy. Those whose loved ones are not following this progression may possibly have a different type of dementia or more than one type of dementia. It has been estimated that 40-50% of those with dementia have more than one kind. (More on that can be found here)
  • The main difference between individuals with LBD isn’t the progression of symptoms, but the time each individual stays in each stage.  Some may be in Early Stage for 3 years or more while others might enter the Middle Stage after only a few months. My husband was in the Early Stage for about 2 years, Middle Stage for about 2 years and the Final Stage for a little under one year.
  • There is no clear cut step between stages. The symptoms morph slowly from one phase into the next. For instance, your loved one might start having swallowing issues, then suddenly improve for a few months before those issues return.  Lewy is tricky that way.
  • The average life expectancy for Lewy Body Dementia is 5-7 years AFTER diagnosis. Many caregivers can recall symptoms for years before diagnosis, but the statistics for survival do not take that into account. Please remember this is an average. Some will not live as long and others will live longer. (A study on that from a caregiver support group can be found here)
  • If a person was diagnosed with Parkinson’s disease several years before Lewy Body Dementia was added (meaning they would have had movement issues first) it’s important to note that most neurologists would diagnose them with Parkinson’s Disease Dementia instead of Lewy Body Dementia. The general rule of thumb is that PDD is diagnosed if the individual has had Parkinson’s for more than 2 years before the dementia symptoms arose, however, the two dementias are extremely similar and treated the same. (more can be found on that here)

Final thought:

I personally found this method easier to understand than the more complicated systems that list dozens of symptoms neatly categorized into several stages. Individuals are too different for that sort of method to work consistently. I’ve also noticed when working with different neurologists, they tend to use the terms early, middle, and late when referring to their patients instead of a complex order of stages. Not once during the time my husband was seeking treatment from either the Cleveland Clinic or our local neurologist did any of the doctors involved say he was in stage two or stage four, etc. They simply said, early/beginning, middle or late. (Some doctors will used the FAST scale, but that is usually for Alzheimer’s)

I think it’s important for caregivers to look at all documents pertaining to possible symptoms and time frames so they have enough information to make important decisions regarding care and finances. However, attempting to pigeonhole your loved one into a rigid staging system might prove to be more frustrating than productive.

 

 

*Feel free to share this post if you feel it might help others gain a better understanding of the caregiving journey.

*If you’d like to follow this blog (it’s free) click on the follow button on the right side of this page and you’ll receive an email whenever there’s a new post. You can unfollow any time you wish.

*If you’d like to see past posts, go to the top of this page and click the “home” button and scroll down, or go to the “categories” on the right side of the page. There are also buttons at the top for helpful links, and other information.

Save

Save

Save

Save

Save

Save

Save

Save

Save

Caregiver survey

Standard

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

Standard

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.
LBD_caringspouses@yahoogroups.com 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

Standard

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.

Criteria

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

 

*Feel free to share this post if you feel it might help others gain a better understanding of the caregiving journey.

*If you’d like to follow this blog (it’s free) click on the follow button on the right side of this page and you’ll receive an email whenever there’s a new post. You can unfollow any time you wish.

*If you’d like to see past posts, go to the top of this page and click the “home” button and scroll down, or go to the “categories” on the right side of the page. There are also buttons at the top for helpful links, and other information.

Save

Phases of Lewy Body Disorder

Standard

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, http://www.LBD_caringspouses@yahoo.com

LBD APPROXIMATE PHASES AS SEEN BY CARING SPOUSES
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