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LEWY BODY DEMENTIA
Lewy body dementia causes a progressive decline in mental abilities.
People with Lewy body dementia may experience visual hallucinations, and changes in alertness and attention.
Lewy body dementia is a progressive illness with no known cure.
Dementia affects millions of Americans and hundreds of thousands of British People.
There are several types of dementia that we know of, including Alzheimer’s Disease and Lewy Body Dementia.
While forms of dementia vary in symptoms and severity, the Global Deterioration Scale aids in identifying the typical progression.
If you or someone you know may be in the early stages of dementia, here’s what you need to know about its seven stages:
STAGE ONE: NO COGNITIVE DECLINE
Stage one is entirely undetectable to the patient, loved ones, and physicians. At this stage, individuals do not experience or present with any cognitive decline.
STAGE TWO: VERY MILD COGNITIVE DECLINE
Stage two may bring subtle changes in the individual, such as mild forgetfulness. These instances may include forgetting names or having trouble locating familiar objects. In the second stage of dementia, it’s difficult or impossible to notice these minor symptoms, and a diagnosis is not yet able to be reached.
STAGE THREE: MILD COGNITIVE DECLINE
Stage three involves mild cognitive decline. The symptoms may become more noticeable to loved ones of the individual in stage three dementia, and a diagnosis may be near. This stage often includes mild memory loss, out of character forgetfulness, and a slightly decreased ability to concentrate.
STAGE FOUR: MODERATE COGNITIVE DECLINE
Many people living with dementia are officially diagnosed during stage four, which is when physicians are able to pinpoint cognitive decline with an exam. At this point, the patient will likely present symptoms such as life-disrupting forgetfulness and out-of-character difficulty performing daily responsibilities. It may become more challenging for those with stage four dementia to manage finances or navigate to new locations.
STAGE FIVE: MODERATELY SEVERE COGNITIVE DECLINE
Stage five is marked by moderately severe cognitive decline. Individuals in this stage often have notable memory loss and begin to struggle with daily activities. Significant details such as address or phone number may be difficult to recall, and those with stage five dementia will likely need assistance with tasks such as meal preparation and bathing.
STAGE SIX: SEVERE COGNITIVE DECLINE
Individuals in stage six need a high level of support to live comfortably. Memory loss tends to be significant, and many in stage six dementia are only able to recall memories of early life. Incontinence is common in this stage, and many patients also begin to lose their ability to speak. A change in personality may occur during this time period, which lasts an average of 2.5 years.
STAGE SEVEN: VERY SEVERE COGNITIVE DECLINE
Stage seven typically lasts for 1.5 to 2.5 years and is characterized by very severe cognitive decline. Patients in stage seven lose their ability to communicate, and are often unable to walk. Individuals in late stage dementia require extensive assistance with life’s activities, and often need round the clock support.
Dementia affects approximately 5 million Americans each year. Lewy Body Dementia (LBD) comprises approximately 1.4 million cases within this figure, and is often misdiagnosed. If you’d like to learn more about Lewy Body Dementia then please feel free to browse our website.
FIVE APPROXIMATE STAGES LEWY BODY DEMENTIA
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
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
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.
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
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/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; and increased Capgras Syndrome · 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.
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
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.
Dependent for all ADLs; patient may require hospital bed, Hoyer lift or Mo-lift, suction machine, etc.); and assistance with repositioning · High risk for URI, pneumonia, and UTI ; skin breakdown; and 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
Simple Checklist for Lewy Body Dementia Diagnosis
How many of the following have occurred at least three times over the past six months?
1. Slowness in initiating and maintaining movement or have frequent hesitations or pauses during movement?
2. Rigidity (with or without cogwheeling) on passive range of motion in any of the 4 extremities?
3. Loss of postural stability (balance) with or without frequent falls?
4. Tremor at rest in any of the 4 extremities or head?
5. Excessive daytime sleepiness and/or seem drowsy and lethargic when awake?
6. Episodes of illogical thinking or incoherent, random thoughts?
7. Frequent staring spells or periods of blank looks?
8. Visual hallucinations (see things not really there)?
9. Appear to act out his/her dreams (kick, punch, thrash, shout or scream)?
10. Have orthostatic hypotension or other signs of autonomic insufficiency?Total how many of the above 10 items occurred at least three times during the past six months. If the total is three or more, there is a very high likelihood of the presence of Lewy Bodies. Discuss the results with your medical specialist.
Lewy Body Dementia UK 