Lewy Body Dementia: Symptoms, Treatment, and Care

One of the most common types of dementia is also one of the least understood: Lewy body dementia. It’s actually an umbrella term that covers several forms of memory conditions, which vary in their causes and symptoms.

Believed to have been present in actor Robin Williams at the time of his death, this disease is finally beginning to receive its due recognition. But awareness has much farther to go. Experts at the Lewy Body Dementia Association estimate that it is present in 1.3 million Americans, many of whom fail to receive necessary treatments.

Education is the first step to ensuring that all people with Lewy body dementia find the support they need.

What Is Lewy Body Dementia?

Lewy body dementia occurs when abnormally-folded protein deposits form in the nerve cell regions responsible for cognition, memory and movement. As these deposits accumulate, individuals may suffer a significant decline in both physical and mental abilities. This may resemble some aspects of Alzheimer’s or Parkinson’s.

Symptoms of Lewy Body Dementia

As a progressive disease, Lewy body dementia involves a wide variety of symptoms that begin slowly and grow more severe with time. In the early stages of the disease, the following symptoms may occur:

  • Hallucinations: Surprisingly, this is one of the first symptoms that many people observe. They may see animals or other people that don’t actually exist. Often, they can describe these sights in great detail. Some may find such visions distressing. Hallucinations can also involve other senses, with people hearing sounds that aren’t present or complaining of nonexistent smells or tactile sensations.
  • Sleep disturbances: Some people suffer issues with REM sleep years before Lewy body dementia is officially diagnosed. Nightmares are a common sign of the disease. Thrashing while asleep is also typical.
  • Damaged executive function: People with Lewy body dementia may struggle with planning or organization. Problem-solving skills may diminish over time.
  • Limited attention span: Concentration can be a major struggle in the early stages of Lewy body dementia. This problem may present itself as memory impairment, although early memory issues are actually less likely than they are with Alzheimer’s. That being said, individuals with the condition may experience fluctuations in attention. This can manifest as extended staring spells or long periods of confusion.
  • Changes in speaking patterns: People with Lewy body dementia may struggle to maintain conversations at previous levels due to motor impairments and issues with concentration. Some also speak with softer voices in a phenomenon known as hypophonia.

A few years after the onset of the disease, those with Lewy body dementia may suffer a more severe version of the symptoms outlined above. Additionally, many begin to experience:

  • Tremors, similar to those experienced with Parkinson’s disease
  • An increased likelihood of falls, caused by the shuffling gait that’s associated with the condition
  • A decrease in standing systolic blood pressure known as orthostatic hypotension
  • Increased saliva production, which may manifest in drooling
  • Incontinence or constipation

Lewy body dementia resembles Parkinson’s in many respects. As such, misdiagnosis is common. The main difference between the conditions? The order in which symptoms appear.

Parkinson’s initially involves physical deterioration, whereas those with Lewy body dementia may suffer mental problems before physical concerns become evident.

Stages and Progression of Lewy Body Dementia

As a progressive condition, Lewy body dementia follows a series of stages, in which symptoms grow more severe over time. People with the condition go through a gradual progression, although the rate at which the condition worsens will vary from one individual to the next.

Some people do not become aware of symptoms or are not diagnosed until they reach late stages. Early identification and treatment are preferable, however, as this can limit symptom severity or even slow the progression of the condition.

Lewy body dementia commonly follows five stages:

Stage I

This stage begins with a concern by those closest to the person that there may be cognitive challenges; by the end of the stage, it’s more apparent and harder to deny. Symptoms include:

  • Hallucinations
  • Shuffling gait
  • Difficulty speaking
  • Stooping posture
  • Difficulty with problem solving or learning new things

Stage II

During stage II, caregivers often seek a medical consultation, but frequently receive an misdiagnosed conclusion. Individuals in this stage are still capable of handling daily activities – such as eating, grooming and moving around – without assistance. Symptoms include:

  • Risk of falling due to balance challenges
  • Leaning to one side
  • Mood changes, including depression and paranoia
  • Occasional incontinence

Stage III

The symptoms progress to a point when a proper diagnosis is more likely to be made. This can create emotional distress for the person with LBD, as well as caregivers and family. Symptoms worsen, and conversations may begin about care in an assisted living community or to requesting professional in-home help.

  • Difficulty moving from one place to another
  • Needs assistance with daily tasks
  • Impaired speech
  • Parkinson’s-like symptoms
  • Confusion

Stage IV

During stage IV, symptoms worsen and the need for assisted living or in-home care increases. Symptoms include:

  • Requiring help with all daily tasks
  • Incontinence
  • Limited ability to speak or hold a conversation
  • Increased saliva that can cause choking or drooling
  • Requires constant supervision

Stage V

At this stage, symptoms become worse. Doctors may recommend hospice care for the appropriate level of support.

  • Muscle contractions
  • Difficulty swallowing; may require feeding tube
  • Very limited language skills
  • Delusions

Causes and Risk Factors

While the research surrounding Lewy body dementia has come a long way in the last several years, scientists still struggle to determine the exact causes of the disease. Age and sex play a role, with men over 60 most likely to develop the condition.

Genetics are also linked to Lewy body dementia but aren’t entirely to blame. At this point, no genetic test can be relied on to accurately predict the risk of developing the condition.

Diagnosis and Treatment

As with most cognitive problems, diagnosing Lewy body dementia can be difficult. Unfortunately, many of the most common symptoms mimic those associated with Parkinson’s disease. In other cases, Lewy body dementia may resemble Alzheimer’s.

In an effort to rule out other forms of dementia or issues such as strokes, those suspected of having Lewy body dementia may undergo extensive exams. These include neurological tests that focus on:

  • Reflexes
  • Muscle tone
  • Muscle strength
  • Balance
  • Eye movements
  • Sense of touch

Shorter tests may be conducted to determine mental acuity. These won’t necessarily distinguish between Alzheimer’s and Lewy body dementia, but they should highlight the need for further examination.

In some cases, brain scans may be required to rule out tumors, which can cause many of the symptoms commonly seen in Lewy body dementia. Neurological exams and medical history play a more prominent role in active diagnosis, but PET scans can assess brain function and determine current levels of dopamine transporter uptake in the brain.

Other tests or procedures that might support a diagnosis of Lewy body dementia include:

  • Myocardial scintigraphy: This cardiac imaging test determines the current blood flow to the heart. While such tests have previously been avoided for fear of delivering false positive reads among those with diabetes, recent research suggests that such fears may be overblown — and that myocardial scintigraphy can play an important role in distinguishing a multifaceted condition.
  • Sleep evaluation: Often, dementia causes significant sleep disturbances, including REM disorders. A sleep evaluation can uncover otherwise hidden sleep issues that might support a diagnosis of Lewy body dementia.
  • Autonomic function test: The autonomic nervous system works automatically to regulate a variety of essential body processes. Malfunctions may suggest the presence of Lewy bodies. An autonomic function test can uncover such problems, as blood pressure instability and heart rate can be significant factors in Lewy body dementia diagnosis.

Unfortunately, there is no cure for Lewy body dementia. Rather, current solutions aim to manage symptoms and improve quality of life. These objectives can be accomplished with a comprehensive approach involving treatments including medications, occupational therapy and music therapy.

Some individuals with Lewy body dementia take medications typically associated with Alzheimer’s. These could include galantamine or rivastigmine. These and other medications may address the cognitive issues that often appear as Lewy body dementia progresses.

Parkinson’s medications such as carbidopa-levodopa are also commonly prescribed, as they may limit physical issues such as rigidity. Other drugs may be required for people who suffer with dementia-related insomnia or anxiety. Antipsychotic solutions such as haloperidol should be avoided, as they can trigger severe confusion.

Unfortunately, many of the medications mentioned above are accompanied by severe side effects. This is particularly true of the drugs meant to mitigate the cognitive and emotional aspects of the condition. For this reason, it’s sometimes preferable to try non-drug solutions first.

Environment, in particular, can make a huge difference. Clutter should be minimized. Ideally, simple routines will be built into each day to provide a sense of structure and reduce confusion.

Lewy Body Dementia Care Options

In the early stages of Lewy body dementia, some people may be able to carry on most daily essentials from home. They may require assistance from caregivers but continue to enjoy a mostly normal and independent way of life. This becomes more difficult as the disease progresses through the aforementioned stages, however, as it can begin to impact both physical and cognitive functioning.

Eventually, further support may become necessary. This allows individuals with Lewy body dementia, and their caregivers, the opportunity to find some peace of mindknowing  a vibrant lifestyle awaits within a close-knit community. An ideal approach will address each person’s physical, mental and spiritual health to make daily life as rewarding and meaningful as possible.

Lewy body dementia diagnosis can be distressing, but it shouldn’t be cause for losing hope altogether. With the right environment and treatment protocol, it’s possible to manage symptoms and maintain a personally satisfying lifestyle. A little support can make a world of difference.

At The Atrium at Boca Raton, our team members understand the needs of those with Lewy body dementia, and they are skilled in offering the right level of care. Call us at 561-750-7555 to learn more, or request a free copy of our Guide for Finding the Right Assisted Living Community.