Lewy Bodies Dementia Phases

I got this list off the LBD Care Givers Support group.  It was put together by LBD  Care Givers in order to help us gauge where our LO's are in the decline process of this disease.

PHASE I POSSIBILITIES

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.

Symptoms and Subtle changes in:

* Increased daytime sleep - two+ hours

* Hallucinations

* REM sleep disorder

* Restless Leg Syndrome

* Sense of smell

* Vision

* Hearing Loss

* Speech

* Physical coordination

* Parkinson’s disease diagnosis

* Shuffling gait

* Slowness of movement

* Posture is altered

* Chronic runny nose

* Myoclonic jerks

* Comprehension

* Ability to learn new tasks

* Memory - short term

* Loss of initiative, interests

* Alertness

* Thinking/learning/ problem solving difficulties suggest dementia

* Mood - Depressed/Anxiety

* Fluctuations in mood

* Able to engage independently in leisure activities

* Handwriting is affected

* Impairments with financial responsibilities

* May be able to work

* May be able to hide (mask) symptoms

* Driving skills

* May accuse spouse of infidelity

PHASE II POSSIBILITIES

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.

Symptoms are clearer:

* 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

* Parkinson’s symptoms controlled with medication

* Able to perform most ADLs without assistance

* 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

* Capgrass Syndrome (seeing or thinking there are two persons or objects)

* Depressed mood

* Paranoia

* Agitation

PHASE III POSSIBILITIES

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/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 IV 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.

* 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 V 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.

* 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