Stages of Lewy body dementia – our journey

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People often ask “what are the stages of Lewy body dementia”. Although the rate of progression varies from person to person, dementia is generally described as going through 3 stages:

  1. Mild / Early stage.
  2. Moderate / Mid stage.
  3. Severe / Late stage.

For more meaningful terms between professionals, caregivers and patients, a more detailed process in 7 stages, has been described for Alzheimer’s disease. A more detailed breakdown is helpful, as it allows carers to plan for the level of care that may be required as the illness progresses. The 7 stages of Alzheimer’s are based on a system developed by Barry Reisberg, M.D., clinical director of the New York University School of Medicine’s Silberstein Ageing and Dementia Research Center.

Some questions many people have are ‘what are the 7 stages of Lewy body dementia?’ or ‘how does Lewy body dementia progress?’ or ‘what are the advanced Lewy body dementia symptoms?’ Unfortunately throughout my research into dementia with Lewy bodies (DLB), although I have come across various breakdowns, I have never come across a similar definitive breakdown of the stages of dementia with Lewy bodies.

Stages of dementia with Lewy bodies – our journey

Stages of Lewy body dementia

Below is a breakdown of how Mum’s illness progressed, which seems to fit broadly with the information that I have managed to obtain when researching how dementia with Lewy bodies progresses.

Mum’s illness seemed to have quite a sudden onset. Initially Mum seemed a little more vague than usual and it was hard to pin her down to any firm arrangements but then suddenly we were dealing with a range of symptoms from very early in her illness.

Precursor to dementia with Lewy bodies.

1. REM sleep behaviour disorder (physically acting out vivid dreams with vocal sounds and sudden arm and leg movement) may be one of the first symptoms of Parkinson’s disease or a Lewy body dementia. Doctors have recognised that patients may have REM sleep behaviour disorder years before other symptoms of Parkinson’s or a Lewy body dementia appear.

Dr. Bradley Boeve, Mayo Clinic researcher and LBDA Scientific Advisory Council member and his colleagues examined the medical histories of a group of patients at the Mayo Clinic with REM sleep behaviour disorder who then developed neurodegenerative diseases such as Parkinson’s disease or a Lewy body dementia at least 15 years later. Among this group of patients, the median interval between the two diagnoses was 25 years, and in one patient the interval was 50 years (i.e. they suffered from REM sleep behaviour disorder 15 – 25 years before they suffered from a Lewy body disease).

For as long as I can remember, Mum talked and moved about in her sleep, for well over 20 years before she developed dementia with Lewy bodies. So it would seem that her illness was possibly already ‘written in the stars’.

2. Researchers at Newcastle University carried out a study to identify symptoms closely associated with Lewy body dementia before a person has dementia, and a loss of sense of smell was also one of the earliest symptoms reported by participants. However as a loss of smell is common in healthy older adults and people with Alzheimer’s disease, it is not specific enough to suggest it is a pre-cursor symptom of Lewy body dementia. That said, however, Mum did lose her sense of smell years before the first noticeable symptoms of dementia with Lewy bodies appeared.

Early Stages.

The symptoms that Mum experienced from very early in her illness included:

  1. Restlessness.
  2. Mood: depressed/anxious.
  3. Loss of initiative, interests.
  4. Alertness varies (fluctuating cognition).
  5. Ability to perform daily tasks affected (making tea/coffee).
  6. Hallucinations.
  7. Delusions.
  8. Problems with spatial awareness i.e. problems walking up/downstairs.
  9. Some movement difficulties (shuffling gait/slowness of movement / physical coordination diminished).
  10. Dizziness on standing.
  11. Increased daytime sleep: two-plus hours.
  12. Chronic runny nose, we couldn’t leave the house without a box of tissues!!

Unlike Alzheimer’s disease, memory usually remains pretty intact in the early stages.

Middle Stages.

As Mum’s illness progressed she became less anxious (possibly due to medication) but along with the symptoms listed above she also started to experience the following:

  1. Symptoms develop that more strongly resemble Parkinson’s including hand tremor and myoclonic jerks – brief shock-like jerks of a muscle.
  2. More frequent falls.
  3. Difficulty with speech and finding words (aphasia). Although Mum talked a lot, as the disease progressed much of what she said stopped making sense.
  4. Impaired ability to swallow.
  5. Declining cognition.
  6. Handwriting affected (often smaller or less legible).
  7. Inability to tell time or comprehend time passing.
  8. Started to struggle to recognise family members.

Later Stages.

During the last year or so of her life, Mum moved to what I would class as the later stages of the disease and became increasing frail and confused (although she still continued to have moments of clarity right until the end of her life). Additional symptoms included:

  1. Extreme muscle rigidity and sensitivity to touch.
  2. High risk of falls.
  3. Became susceptible to infections (urinary and chest).
  4. Difficulty swallowing.
  5. Decreased or no language skills, speech is difficult and maybe whispered.
  6. Incontinent of bladder and bowel.
  7. Increased daytime sleeping.
  8. Hallucinations are prevalent but less troublesome.
  9. Needs assistance with all aspects of daily living.

I think one of the hardest things with dementia with Lewy bodies is the number of very challenging symptoms that appear from very early in the progression of the illness, so the loss of independence occurs early. I also believe that carer’s need to understand the disease to be able to provide adequate care. It is for this reason that I am now passionate about raising awareness about dementia with Lewy bodies, why I started this website and why I wrote a book charting our journey in more detail.

Useful information

Does Lewy Body Dementia Have Stages & How Does It Progress? – verywell website.

Stages or Phases of Lewy Body Dementia – Lewy Body Dementia website.

10 thoughts on “Stages of Lewy body dementia – our journey

  1. Thank you for this site and all the info and details of tour experiences

    My Gran was eventually diagnosed in September 2020. But we aren’t sure how long she had had it we think several years, visions were written off as Charles Bonnet as she was already going blind, so we think she will of been having hallucinations around 4-5 years and alot of the symtoms we have put down to her frailty of being in her 90s.

    I moved in to look after her a year ago when she had surgery and was alarmed that she would get up at 5am had put the washing on or try to put the bin out and odd things she was doing or saying I once walked in on her trying to climb onto a chair to climb out the window (at 90 she deserves some qudos for attempting that feat). Another time she was giving her own eulogy in her living room to a fill congratulations announcing and singing the hymns and thanking everyone for coming.

    Finally my sister went on a dementia awareness course for work and they mentioned Lewy Body Dementia. Everything I had.mentioned to her and mum about what was happening with grandma was on the list of symptoms, the frequent UTIs the accidents the disturbed sleep, the constant talking through the night

    I thank God everyday that my sister went on that course and became aware of this Disease, now I also play for patience and kindness and the ability to make however long we have left as peaceful and fun for Grandma as it can be and that we are all still standing when she is finally at peace.

    Thank you

    1. Hi,

      Sorry to hear about your Gran. I truly believe that to be able to properly care for someone living with Lewy body dementia, you have to understand the disease. It is why I am now passionate about raising awareness. I hope the information on the site helps you in your journey with your Gran, it sounds like she has got a great team behind her x

  2. My husband passed September 21, 2018 from LBD. He was diagnosed @ 7 years before he passed but he showed symptoms a couple of years before that including scary nightmares that he would act out in his sleep. He was still working at this time. The next symptoms were later and included hallucinations which although very real to him were not always scary. Shortly after this began the falls and when I look back it seems as though he went from walking to a walker to a wheel chair within a short period of time. My husband spent his last couple of years in a Nursing Home being cared for by very caring and compassionate people. I was fortunate in that I was able to visit him every day. When he passed he could no longer walk, talk, or swallow but knew me right until the end. What a terrible disease. I miss him very much.

  3. Mum has Lewey Body but also had a stroke so can no longer walk. The later stage is exactly what I see. It is so hard thatch her go but still be there if you know what I mean. Great information thank you.

  4. My brother with first Parkinson’s, and now Lewy Body, is in the final stages at age 69. A year ago he was living with us and functioning well. Lewy Body is just unbelievable, thank you for the site, very informative!

      1. Yes. My husband was first diagnosed with Alzheimer’s. They hare recently added Lewy Bodies with Parkinsonism to his diagnosis. It’s my understanding that if you get diagnosed first with a dementia you see a neurologist. If you get diagnosed first with Parkinson’s you see a movement disorder doctor. Our neurologist at UTSW in Dallas, TX which is also a teaching hospital, said that on autopsy most show more than one type of dementia. They treat Alzheimer’s and Lewy Bodies with same medication. Of course there is also another medication for Parkinson’s.

      2. Teresa, yes, unfortunately.
        My partner started with tremors in one arm/hand and was diagnosed with Parkinson’s (3/16)
        At that time, he had full care of his severely disabled son, because his wife had passed in 2014.
        By April of 2017, the hallucinations had started, very frightening ones, his ability to think and reason was severely diminished, diagnosed with LBD
        11/2017 Aggression toward me, but he was completely demented, saw me as someone else from his childhood, and he ended up in a mental unit of hospital, then a Memory Carè facility
        10/2018 Mercifully passed to join his wife, he was a wonderful, intelligent, funny, caring friend of mine for 45 years and this disease is just horrendous. But he had an absolutely horrible childhood, and it came back to haunt him. Not all LBD presents this way.
        His journey, after first diagnosed, was only two and a half years.
        Hugs and Prayers to all

        1. Hi,

          Sorry to hear about your partner. I think many aspects of Mum’s childhood and life impacted on how the illness affected her, she also ended up in a hospital and then a Memory Care unit. Her journey was 7 years from the onset of symptoms. Lewy body dementia truly is a horrendous disease.

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