Five Approximate Phases of Lewy Body Dementia (as seen by caregivers)

This post is about five phases of Lewy Body Dementia, according to a group of caregiver spouses.

Some members of the LBD_caringspouses Yahoo!Groups list have been working on the “LBD Approximate Phases” for a year now.  I just received from Sue Lewis this final version of the Phases.  This caregivers’ view of the five phases of LBD is a worthwhile document, especially for those new to the world of LBD.  They’ve been working on this list on and off for so long that, at this point, they are not inviting your suggestions on how to modify the document.  But they welcome any general comments (primarily positive ones, I think)!  You can send comments to me and I’ll pass them on (unless you know Sue Lewis’ contact info from the LBD_caringspouses list).



August 2007

Facilitated by Sue Lewis of West Virginia, edited by June Christensen, Kansas


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
LO: Loved One
LW: Living Will
MPOA: Medical Power of Attorney
PCP: Primary Care Physician
POA: Power of Attorney
REM: Rapid Eye Movement sleep disorder
URI: Upper Respiratory Infection
UTI: Urinary Tract Infection
WCh: Wheelchair


Most caregivers are concerned/worried that something is not right. Please note that symptoms from later stages can appear at this early phase. At the end of this phase, dementia is becoming difficult to deny

  • Possible REM sleep disorder
  • Restless Leg Syndrome
  • Hallucinations
  • Possible Parkinson’s disease diagnosis
  • Myoclonus (involuntary jerking) 
  • Increased daytime sleep – two+ hours
  • Loss of sense of smell (Anosmia)
  • Vision problems
  • Hearing loss
  • Speech problems ·
  • Impaired physical coordination (ataxia)
  • Shuffling gait
  • Slowness of movement
  • Altered posture (called Lewy Lean) 
  • Chronic runny nose
  • Impaired comprehension and cognition
  • Inability to learn new tasks
  • Loss of initiative and interests
  • Diminished alertness
  • Short-term memory loss but able to hide (mask) symptoms or engage in show time ·
  • Mood: Fluctuations
  • Depressed/anxious
  • Paranoia
  • May accuse spouse of infidelity, aggression
  • Able to engage independently in leisure activities
  • Handwriting is affected
  • Impaired ability to handle financial responsibilities · Still may be able to work but driving skills often compromised



Most caregivers are worried that something is wrong and seek medical attention. May be given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s). Please note that symptoms from later or earlier stages can appear at this phase. It is strongly suggested that caregivers consult with an elder law attorney at this phase. At least, have a Power of Attorney and Medical Power of Attorney document on the patient. Family, friends, caregivers may successfully take financial advantage of LO. Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.

  • Ambulates/transfers without assistance but increased risk for falls/requires walker
  • Leaning to one side (Lewy Lean)
  • Possible fainting
  • Able to perform most ADLs without assistance
  • Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth)
  • Occasional episodes of incontinence (one or two a month)
  • Constipation
  • Parkinson’s symptoms may be controlled with medication
  • Increased difficulty in:
    • Finding words (aphasia)
    • Organizing thoughts
    • Reading & comprehension
    • Following TV programs
    • Operating home appliances
  • May be able to administer own medications
  • Able to follow content of most conversations
  • Able to be left unsupervised for two or more hours
  • Delusions
  • Capgras Syndrome (seeing or thinking that a person or objects have been replaced by another identical one)
  • May be more depressed
  • More paranoid and more agitated



Most caregivers have the correct diagnosis. Caregiver and patient actively grieve. Caregivers need regular planned respite. Caregiver needs require regular preventive health care. Caregivers may need home health aide assistance to maintain LO in the home. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety risk. The needs of the patient affect personal finances. Please note that symptoms from later or earlier stages can appear at this phase.

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



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.

  • Needs continuous assistance with ambulation/transfers
  • High risk for falls
  • May need electronic lift recliner chair
  • Needs assistance with all ADLs
  • Requires 24-hour supervision
  • Autonomic dysfunctions need regular medical monitoring
  • 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
  • Parkinson’s symptoms need regular medical monitoring
  • Choking, difficulty swallowing (dysphasia), aspiration, excessive drooling
  • Increased daytime sleeping
  • Hallucinations prevalent but less troublesome



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.

  • Dependent for all ADLs
  • Patient may require hospital bed
  • Hoyer lift or Mo-lift, suction machine, etc.
  • Assistance with repositioning
  • High risk for URI, pneumonia, and UTI
  • Skin breakdown
  • May have a fever
  • Difficulty swallowing with possible decision for feeding tube necessary
  • Muscle contractions – hands, legs, arms; lean to either side very pronounced
  • May need nutritional supplements
  • Ensure/Boost/Carnation Instant Breakfast
  • Unable to follow simple commands
  • Decreased or no language skills
  • Constant delusions
  • Fluctuations less frequent and more severe