Stages of Lewy body dementia – our journey

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 carer’s 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.

One question many people have is ‘what are the 7 stages of Lewy body dementia?’ or ‘how does Lewy body dementia progress?’. 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/down stairs.
  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 may be whispered.
  6. Incontinent of bladder and bowel.
  7. Increased daytime sleeping.
  8. Hallucinations 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, see side bar.

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.

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

  1. 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.

  2. 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!

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