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)
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.