If you need to, jump straight down the page to the potential phases/stages section.

Stages and Phases of Lewy Body Dementia -- info-graphicI’m no fan of applying the concept of “stages” or “phases” to predict the trajectory of a person with Lewy Body Dementia . I’ve witnessed far, far too much variation. Precipitous drops. Miraculous recoveries. Dizzying variations. I consider it a continuum. And not a linear one.

So I never apply stages, phases or expectations. The only one I knew for certain, was the very end. The rest was a wild ride indeed.

But there’s a constant desire by people desperate for answers, for a clue to where they’re going, what’s next, how to plan or just get by. And for that reason, I present the best one I’ve found.

I defer to the exceptional work of an exceptionally resourceful and committed duo, Sue Lewis and June Christensen, who exhaustively compiled the document based on input from approximately 300 members of an online group called Lewy Body Caring Spouses in 2006.

In my view, this is the best description of a possible sequence, categorized into five groupings of symptoms, which will always have a great deal of overlap.

Keep in mind these categories and their contents are “potential.” Personally, I shy away from the phrase “stage” and use something like earlier or later in the sequence of symptoms, which can fluctuate shockingly. This is a subtle, but important difference to me.

The following piece is based on the discussions and observations of the LBD caring spouses. It is in no way intended to represent research or science. It is developed as a very broad framework to refer to. But, “to be forewarned is to be forearmed.”

The phases have no specific time frame. Due to the fluctuations of the disease, the phases are not linear. Instead, phases tend to “ebb and flow” or subtly appear. Symptoms noted in an early phase may be present for the course of the disease. These symptoms may increase in frequency or severity over time. Or not.

In addition, patients that are still “high-functioning” may also show symptoms of Phase III or IV. By no means will a person with LBD display all the symptoms listed in any specific phase. Therefore, each phase is described with “possible” symptoms.

Many commonly used acronyms are used here, which you will likely experience elsewhere as a caregiver. In alphabetical order:
  • AD — Alzheimer’s Disease
  • ADL — Activities of Daily Living – dressing/bathing/ feeding oneself
  • BP — Blood Pressure
  • CG — Caregiver
  • DME — Durable Medical Equipment–wheel chair, shower chair
  • DPOA — Durable Power of Attorney
  • LBD — Lewy Body Dementia (or Dementia with Lewy Bodies)
  • LO — Loved One
  • LW — Living Will
  • MPOA — Medical Power of Attorney
  • PCP — Primary Care Physician
  • PD — Parkinson’s Disease
  • POA — Power of Attorney
  • REM — Rapid Eye Movement sleep disorder
  • URI — Upper Respiratory Infection
  • UTI — Urinary Tract Infection

 


 

Approximate Lewy Body Dementia Phases, Symptoms and Considerations

Phase 1 Possibilities

Most caregivers are concerned/worried that something is not right. Symptoms from later stages can also appear this early on the continuum. At the end of this phase, cognitive impairment is difficult to deny.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

Symptoms and subtle changes may include:

  • Increased daytime sleep: two-plus hours
  • Hallucinations
  • REM sleep disorder
  • Restless Leg Syndrome
  • Sense of smell diminished
  • Vision affected (clarity, comprehension and/or peripheral)
  • Hearing affected (clarity and/or comprehension)
  • Speech difficulty (word-finding, pronunciation, etc)
  • Physical coordination diminished
  • Parkinson’s disease diagnosis
  • Shuffling gait
  • Slowness of movement
  • Cog-wheeling (smooth motions now jerky)
  • Posture altered (stooping or leaning)
  • Chronic runny nose
  • Myoclonic jerking
  • Comprehension issues
  • Ability to learn new tasks affected
  • Short term memory impacted
  • Loss of initiative, interests
  • Alertness varies
  • Thinking/learning/ problem solving difficulties suggest dementia
  • Mood: Depressed/Anxiety
  • Fluctuations in mood
  • Able to engage independently in leisure activities
  • Handwriting is affected (often smaller or less legible)
  • Impairments with financial responsibilities
  • May still be able to maintain employment
  • May be able to hide (mask) symptoms
  • Socialization still possible
  • Driving skills affected
  • May accuse spouse of infidelity
Phase 2 Possibilities

By this point, most caregivers are worried that something is seriously wrong and seek medical attention. Frequently given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s Disease).

Caregivers consult with an elder law attorney by this point: at very least have a Power of Attorney and Medical Power of Attorney document on the patient. Protect assets: family, friends, caregivers may be able to take financial advantage of LO. Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.

Symptoms are usually clearer by this point:

  • Balance and stability diminished
  • Ambulates/transfers without assistance
  • Increased risk for falls/requires walker
  • Occasional episodes of incontinence (1 or 2 a month)
  • Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth)
  • Leaning to one side when standing, walking and seated
  • Parkinson’s symptoms controlled with medication
  • Able to perform most ADLs without assistance

Increased difficulty with:

  • Finding words (aphasia)
  • Organizing thoughts
  • Reading & comprehension
  • Following TV programs
  • Operating home appliances
  • May be able to administer own medications
  • Able to follow core content of most conversations
  • Able to be left unsupervised for two or more hours
  • Delusions more firmly held
  • Capgrass Syndrome (seeing or thinking there are identical duplicates of people, locations, objects, etc)
  • Depressed mood
  • Paranoia
  • Agitation
Phase 3 Possibilities

Correct diagnosis by this point more likely. Caregiver and patient actively grieve. Caregivers may need home health aide assistance to maintain LO in the home. Caregiver needs regular planned respite to maintain their own health. Caregiver health issues often arise and require health care. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety and health risks. The needs of the patient significantly affect personal finances.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

  • Ambulation/transfer s are impaired, needs assistance with some portion of movement
  • At risk for falls
  • Increase of Parkinson’s symptoms
  • Increase of autonomic dysfunctions
  • Needs assistance/supervision with most ADLs. May require DME
  • Frequent episodes of incontinence (two+ per week)
  • Speech becomes impaired, projection (volume) may decrease
  • Able to follow content of most simple/brief conversations or simple commands
  • Able to be left unsupervised less than one hour
  • Unable to work
  • Unable to drive
  • Unable to administer medication without supervision
  • Unable to organize or participate in leisure activities
  • Increased confusion
  • Possible delusions & Capgrass Syndrome
  • Inability to tell time or comprehend time passing
  • Increased difficulty with expressive language
  • Mood fluctuations (depressed, paranoid, anxious, angry) requiring medical monitoring
  • Severity of symptoms may increase or decrease
Phase 4 Possibilities

Caregiver at high risk for chronic health/joint problems. Self-care is paramount to providing patient care. The needs of the patient require the assistance of a home-health aide/private-duty aide two-to-seven days per week. Increased patient needs may require potential for long-term care placement. Patient may be declared mentally incapacitated. Caregiver may need to explore Hospice services.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

  • Continuous assistance with ambulation/transfers
  • High risk for falls
  • Needs assistance with all ADLs
  • Incontinent of bladder and bowel
  • Unable to follow content of most simple/brief conversations or commands
  • Speech limited to simple sentences or one-to-three-word responses
  • Requires 24-hour supervision
  • May need electronic lift recliner chair
  • Parkinson’s symptoms need regular medical monitoring
  • Autonomic dysfunctions need regular medical monitoring
  • Choking, difficulty swallowing, aspiration, excessive drooling
  • Increased daytime sleeping
  • Hallucinations prevalent but less troublesome
Phase 5 Possibilities

Caregiver is actively grieving. Potential for increased caregiver stress. Hospice assistance is strongly suggested. Caregiver will need hands-on support from others to maintain LO at home. Caregiver may need to honor decisions made earlier on the Living Will.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

  • Difficulty swallowing
  • Dependent for all ADLs
  • High risk for URI, pneumonia, and UTI
  • High risk for skin breakdown
  • Patient requires hospital bed, Hoyer lift or Mo-lift, suction machine, etc.)
  • Muscle contractions – hands, legs, arms
  • Lean to either side very pronounced (sometimes called Lewy Lean)
  • May carry a fever
  • May need nutritional supplements – Ensure/Boost/ Carnation Instant Breakfast
  • May require decision whether or not to use feeding tube
  • Unable to follow simple commands or assist with repositioning
  • Decreased or no language skills
  • Constant delusions
  • Fluctuations less frequent and more severe

Thanks again for the exceptional work of curators, authors, and caring spouses who compiled the original information — you leave a lasting legacy:

  • Sue Lewis (MSW, RN) of West Virginia, USA
  • June Christensen of Kansas, USA

Strength to all!
Timothy Hudson.

Stages or Phases of Lewy Body Dementia

19 thoughts on “Stages or Phases of Lewy Body Dementia

  • April 6, 2017 at 1:28 am
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    Thank you very much. We’re in Phase 4 … so very sad.

    Reply
    • April 7, 2017 at 12:20 am
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      No matter what stage, I am sorry for you, and know that your diligence searching for answers and options will make your journey the best it possibly can be, Maggie. Strength to you!

      Reply
  • May 7, 2017 at 5:35 am
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    Thank you so very much for your very informative website. My husband was diagnosed two weeks ago. He probably fits in phase one to two presently. Your site gave me the answers to the questions I had about our future. With thanks, S.

    Reply
    • May 7, 2017 at 3:22 pm
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      Happy to help, S. I hope you find other information here helpful as things progress. It is a hard condition, and there is surprisingly limited information that’s reliable, and which covers all the aspects of making the life of a person who has Dementia with Lewy Bodies the best it possibly can be. Your compassion and advocacy for your husband will make his journey exactly that: the best it possibly can be. Strength to you! Timothy Hudson.

      Reply
  • May 13, 2017 at 12:58 pm
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    Hi Timothy,
    My husband Joe passed away on April 26, 2016 and suffered with LBD for approximately 7 years. The 5 stages you outlined could be Joe’s medical history and are his exact stages. We both wished for this type of outline for years. I felt like I was always one step behind in trying to decide what he needed next. Thank you for all your hard work and dedication to helping all of us who suffer with terrible Lewy.

    Reply
    • May 15, 2017 at 2:16 am
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      Very sorry for the outcome, Kathy. I believe that a lot of the components listed in this article are ones that many, possibly even most, people with Lewy Body Dementia will experience. And although I am highly hesitant to offer anything akin to a “prediction” of progression, any help with decision making, which has to happen whether there’s a “prediction” or not, is beneficial.
      Thanks for your kind words. I genuinely appreciate them. Strength to you, Kathy!

      Reply
  • May 27, 2017 at 11:46 pm
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    I must say this is the most comprehensive and detailed information I have been able to find on my husband’s condition after doing lots of research. Hubby’s symptoms go back about 5 or 6 years and the phases describe exactly how his condition affects him and how it has changed over the years. I felt myself smiling as I immediately related to the contents of each phase, especially the one about a spouses infidelity which I was accused of more than once and although I knew it was his condition, I still found it very hurtful, especially when he relayed his thoughts to outside care givers. I think he is between phase 4 and 5 at the moment and although predictions and exact “stages” cannot be given it gives an excellent insight into how they can possibly be broken down. Well done to everyone involved for this brilliant article, it has been very gratefully received.

    Reply
  • May 29, 2017 at 11:51 pm
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    Thank you for your insight. My husband has all symptoms to a degree but the most debilitating one is low blood pressure which means he is constantly dizzy as soon as he moves and has to hold onto the wall to walk. Is this going to be with him for the entire time? It has been a year now and what stage would you put this in? He has passed out with it and also has trouble controlling body temp.

    Reply
    • June 5, 2017 at 2:31 am
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      Unfortunately, I can’t say, because I am not a doctor, Linda. From my personal experience, the very low blood pressure was an ongoing issue, for a number of years. The way we managed it best (not perfectly) was to always do things gradually — arising from bed to seated, wait; slowly stand (with support), wait; take a few steps always with “hands on” for safety. Falls of any sort are so difficult, and so frequently catastrophic. One other thing that saved us was counter-intuitive to conventional wisdom: we had a lot of rugs, soft furniture everywhere, and virtually no “open spaces.” This meant that on the occasions that falls happened in the house, they were often “cushioned.” Won’t work for everyone for sure, but saved us on several occasions. I hope you can find something that will help, or a way that you can manage things somehow. Strength to you, Linda!

      Reply
  • July 5, 2017 at 5:47 am
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    Thank you so much for this! My 80 year old, very healthy mom was told on Sunday, by an infectious disease doctor no less, that her husband of 55 years most likely has the “Lewy type of Alzheimers” (I googled Louis Alzheimers and discovered the answer to the mystery of his many debilitating, odd and fluctuating symptoms). After printing information and showing it to her she said “it describes him exactly”. My Dad seems to be in “stage 3”. Although it is taking its toll on the family (fortunately my sister and I live close by), I am grateful we have an accurate diagnosis and that he is still often lucid enough to participate in conversation and we are trying to take it one day (sometimes one hour!) at a time.

    Reply
    • July 10, 2017 at 2:16 am
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      You’re doing everything right, Nancy, by taking each moment as it comes. Adaptability is the key to surviving this, and to providing the best possible journey for your dad. I’m glad you found the information useful — knowledge is power, and that leads to better outcomes. Hoping for the best for your family — supporting your mom and dad will make a profound difference. Strength to you!

      Reply
  • July 9, 2017 at 4:45 am
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    Thank you for this very helpful list of phases and symptoms. Have read your column regularly on Facebook and kept hoping for this very information so I might know, as others here have expressed, what our future might hold.
    My husband is definitely in stage 2 and has some symptoms of later stages. He is not falling but has all the symptoms of autonomic dysregulation that you describe. The difficult fact for me is his going from semi-normal to very debilitated. People will comment that “he looks fine” and he might at the moment but then there’s a downturn. I am comforted to know we are not alone in this. I am so happy and grateful during the good times.
    Thank you again for the support and for this important information.

    Reply
    • July 10, 2017 at 2:19 am
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      You are so wise indeed “to be happy and grateful during the good times.” Bravo! That is an exceptional method of adapting to such a tough situation. So many difficulties and stresses, worries, and losses, but there is joy and hope possible still in almost all cases. And you will find that you are infinitely stronger and more resourceful than you thought, but this will likely only be recognized long afterwards, because there will be so many traumatic moments. So if you can, take additional comfort knowing that you are making an incomparable difference in his life. Strength to you! Timothy.

      Reply
  • July 25, 2017 at 7:23 am
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    My father-in-law has LBD and we live in the UK and I think we are struggling due to the doctors and support teams not really knowing enough information to support us as the family. My husband showed me this and this has described his father exactly and we thing he is in stage 4 but he was only diagnosed a year ago so it seems to have progressed rapidly. It’s so sad and I really worry about my mother in law trying to do this as his main carer. This article we will show to the rest of the family for us to try and understand together. Thank you

    Reply
    • July 28, 2017 at 1:52 am
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      Glad to be of help. The UK has a great association, http://www.LewyBody.org — they do fantastic work, and might be able to get you connected with additional services. In addition, I post very regularly on a searchable, public FaceBook page which is exclusively Lewy-oriented, http://www.Facebook.com/Lewy.ca — it might help you and your mother in law with education, information, insight and hope. It’s a rough ride, as you know, Samantha, and I am very sorry you’re going through this with your family. Whatever you can do to support your in-laws will make a profound difference, and I’m sure you have such goodness in you that it will make an even bigger difference. The research and outreach you’re already doing proves this. I hope things go the best they possibly can.
      Strength to you, and your family, Samantha! Timothy Hudson.

      Reply
  • August 2, 2017 at 6:32 pm
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    With great gratitude I thank you for all your dedication and hard work putting all this info together .
    Sincerely
    Cynthia S.

    Reply
    • August 7, 2017 at 6:26 pm
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      Thank you for your note, Cynthia. Glad to help increase understanding and awareness. Credit goes to the original authors, Sue Lewis and June Christensen, who exhaustively assembled what I consider to be the best grouping of symptom-stages, still, after ten-plus years. Strength to you, Cynthia! Timothy Hudson.

      Reply
  • August 10, 2017 at 5:24 am
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    Thank you so much for all the information you have provided on LBD. My husband has had LBD for approx seven years . I would think he is in the 4/5 Phrase . Reading your information has certainly enlightened me Plus everyone’s comments . Thanks heaps again to every one for your wonderful advice & help .

    Sincerely Doreen Mason

    Reply
    • August 11, 2017 at 3:09 am
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      Hi Doreen. You’ve obviously done a great job keeping your husband so well after seven years. I’m delighted the information has been helpful to you — we all need all the enlightenment from each other we can get. When we started the journey with Lewy, I couldn’t find anything beyond books, which were exceptional, but not easy to access, and not with enough breadth of information. The comments of others, and on social media has made a huge difference to me as well. Strength to you, Doreen, you’re doing a great, powerful thing for your husband.
      Timothy Hudson.

      Reply

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