Lewy Body Dementia Story: Coy’s Journey

Donna Pittman Father Coy with Lewy Body Dementia

My family’s Lewy body dementia story began with a misdiagnosis. My father was diagnosed with Alzheimer’s disease in 2013 after a long heart-valve surgery. He spent extended time under anesthesia and then had to go under again a few days later to resolve the first of many complications. My mother and I noticed that the man who left the hospital and rehabilitation center almost thirty days later was not the same man who had entered the hospital.

Early Signs

One of the first signs that my father’s brain was not well was that he lost the ability to balance his checkbook. He had always been meticulous about balancing his checkbook down to the last cent. At that point, my mother took him for testing with his primary care physician, who mistakenly determined that my father was in the early stages of Alzheimer’s disease. He told us that the long hours under anesthesia had most likely aggravated the condition.

The incorrect diagnosis was not unusual. The Lewy Body Dementia Association reports that LBD is the second most common type of dementia but the most misdiagnosed. It impacts one million people in the US each year.  It is frequently diagnosed as Alzheimer’s disease because there is no specific test to differentiate it until after the death of the patient.

5 Lewy Body Dementia Symptoms My Father Had

However, as the years passed, some of his symptoms just did not fit the Alzheimer’s profile. Here are five Lewy body dementia symptoms that led to my father’s eventual diagnosis:

  1. My father had fluctuating levels of confusion and concentration. On certain days, he appeared to be fine cognitively.  He held conversations, worked around the house, and completed tasks as he normally would have.  On other days, he would forget how to drive home from the grocery store or operate the microwave.
  2. He had severe sleep disturbances. He would act out dreams, often violently. My father would have extreme daytime drowsiness. Some days, he would sleep for a total of 18-20 hours in a 24-hour period.
  3. His movements changed. He developed hand tremors and began to shuffle instead of walking normally. His balance became impaired, and he suffered several falls. At 230 lbs., picking him up was nearly impossible. Parkinson-like symptoms are a hallmark of LBD.
  4. He began to have auditory and visual hallucinations (which was our PRIMARY clue). He would think he saw children playing in the floor or a group of women talking in the other room. My father would hear people having conversations in another room when no one was there. He began to believe his home was haunted and became fearful.
  5. He began to have violent outbursts toward others. He kicked and hit my mother as well as nurses, doctors, and the hospital security guard. During the times he was so volatile we took him to the nearest emergency room for help.


Finally, in the summer of 2019, my father began wandering.  Several times, my mother would wake up and find him missing in the middle of the night.  She would drive through their small town searching for hours and eventually locate him. The wandering, plus the above symptoms, made her realize that she could no longer keep him safe in their home.

In early October, my father spent one week in a geriatric psychiatric hospital where he was diagnosed tentatively with Lewy body dementia.  He had several medications changed because certain anti-psychotic medications that he was on were actually making him worse.  He then moved into a dementia-care facility.

Nightmare Experience with Dementia-care Facility

We thought that we were making the best decision, but the dementia-care facility was understaffed, poorly-run, and did not understand how to work with LBD patients, especially large, sometimes-aggressive males.  The four months he spent there were a nightmare.  We were frequently called because they could not handle his behavior. Twice, he was sent via ambulance alone to the local ER, where he could not remember his current address or phone number- just his name and birthdate. We were honestly appalled at the care he received.  We once arrived for a visit, and his Depends had a date and time written on it 22-hours earlier. He had worn the same soiled adult diaper for nearly 24-hours.

His behavioral issues spiraled, and after he choked a female nursing assistant one evening, he was sent for another stay at a different geriatric psychiatric hospital.  There, he was so heavily medicated, he couldn’t lift his head.  My father didn’t seem to recognize his family or understand his surroundings at all. He was propped up in a wheelchair during the day, but he struggled to even open his eyes during visits.

He was allowed to return to his dementia-care facility after this stay. Although weak and over-medicated, he was no longer violent. At this time, my father was placed under hospice care, and a wonderful hospice nurse named Robin entered our lives.

I cannot say enough about the difference Robin made. She was a fierce advocate for him with the facility staff. She treated him as if he were her own father. She advised us to get him out of the current living situation.


In February of 2020, just before the start of covid, we found another assisted-living facility with a locked dementia wing.  He was much happier there and was better cared for in the new facility.  In March, they closed their doors to visitors, which was devastating to us as a family, but Nurse Robin texted us pictures, called us on Facetime, and kept us in contact with him.

Final Stages of Our Lewy Body Dementia Story

On May 6, we received the call we had been expecting for quite some time.  Robin believed the end was near and despite covid regulations, the assisted living would allow us to be with him in his private room until he passed.  My mother rushed to the facility and found my father emaciated (he had stopped eating and drinking for the past week) and agitated.

She tried to calm him for hours, and then he finally fell into a deep sleep.  He was in that sleep when I arrived from out of town, and for the next three hours, my mother and I sat by his bedside. I will never forget the sound of the death rattle and counting the seconds between his breaths until the next one didn’t come.

Even though the last months of his life were rife with turmoil, he died peacefully around midnight. There was no struggle, no dramatic exit.  For my mother and me, it was a moment of both sadness and relief.

Lewy body dementia story
Photo of Donna and her father on their last Thanksgiving together.

Author Bio

Donna Pittman is a writer and community-college professor from Tennessee.

Lewy Body Dementia Specialist, Diagnosis & Treatment

lewy body dementia specialist

To get a proper diagnosis and treatment for Lewy body dementia (LBD), it is important to consult a Lewy body dementia specialist.

LBD describes a kind of progressive dementia that often leads to a decline in thinking.

The main reason it is important to work with a specialist is that diagnosing Lewy body dementia is usually challenging.

Some of the early LBD symptoms are similar to the warning signs found in other brain illnesses like Alzheimer’s disease, Parkinson’s disease, or psychiatric diseases.

It is one of the primary reasons LBD specialists are needed because they possess special skills that they can use to properly diagnose Lewy body dementia.

LBD remains a “clinical diagnosis” implying that it represents a medic’s best professional judgment about the reason why a person is going through certain symptoms.

Note: Some other names for LBD are Lewy body dementia, cortical Lewy body disease, diffuse Lewy body disease.

Have a look at some of the specialists that can help with LBD diagnosis.

Specialists who Can Diagnose Lewy Body Dementia

specialists who can diagnose lewy body dementia
When you first notice any physical, cognitive, behavioral or emotional problems, your first stop will probably be at your doctor’s office.

If your physician is not too familiar with LBD, they may refer you to a Lewy body dementia specialist.

They are a few professionals you can consult including neurologists who specialize in brain disorders as well as those of the nervous system implying they have what it takes to tell if a person has LBD or not.

Other professionals include geriatricians, geriatric psychiatrists, and neuropsychologists who have skills that can diagnose this dementia type.

Other than your doctor’s referrals, you can also use Lewy Body Dementia Association Research Centres (a reputable research network) to find specialists who are knowledgeable about LBD.

Lewy Body Dementia Tests

The specialists usually conduct several tests before coming up with a diagnosis like:

Brain Imaging

Magnetic resonance imaging and computed tomography can be used to detect structural abnormalities in the brain or brain shrinkage which can help rule out other possible causes of movement and dementia symptoms.

Medical examination and history

Doctors will always review a person’s medical history thoroughly to try and figure out what is going on.

This includes looking into current and previous illnesses, checking out the medications and alternative treatments a person is on as well asking about all the symptoms that the person has.

They will also conduct tests of memory and movement in a bid to collect valuable details they can use for the diagnosis process.

Neurological tests

These are tests medics will perform to assess memory as well as other cognitive functions to help recognize the areas of the brain that are affected.

Medical tests

Laboratory studies are also included in the diagnosis process to rule out other medical conditions, vitamin, or hormonal deficiencies that may be causing the symptoms a person is experiencing.

Heart tests

Some specialists may also see it fit to order myocardial scintigraphy a heart test that checks blood flow to the heart which can be one of the LBD symptoms.

Worth noting is that currently, no medical tests or brain tests can affirmatively diagnose Lewy body dementia. It is only possible to diagnose LBD through brain autopsy after a person dies.

Scientists are, however, working hard to find more effective solutions to accurately diagnose Lewy body dementia in a living brain.

Lewy Body Dementia Treatment Options

lewy body dementia treatment options
To date, there is still no cure for LBD. A Lewy body dementia specialist may, nonetheless, offer guidance on how to manage the illness.

Some of the symptoms may respond positively to treatment for some time. Treatment plans normally involve a combination of:


lbd medicines
Doctors may prescribe several drugs to treat some LBD symptoms. It is advisable that a ill individual refrains from self-medicating because some medications are known to make the symptoms worse.

Working with a knowledgeable health professional is essential because they can switch up the drugs in case of severe side-effects.

They can also know how to pair up drugs to avoid medicine interactions. The drugs a person is given depends on the symptoms they are going through.

For instance, a doctor may recommend Exelon, Razadyne, or Namzaric for memory and thinking problems.

Sinemet may help with stiffness, slowness, and tremor while Klonopin can be useful for sleep disturbances and so forth.

Different Types of Therapies

different types of lbd therapies
After a positive diagnosis for LBD from a Lewy body dementia specialist, a person may have to work with a team of professional therapists on different highly effective therapies, depending on the symptoms they are experiencing such as:

Speech therapists

The experts can assist with voice projection, low voice volume, and swallowing challenges.

Physical therapists

They can help with movement issues through flexibility, strengthening, and cardiovascular exercises as well as general physical fitness programs. Some individuals with LBD might also need gait training

Expressive art or music therapists

The professionals help weak persons engage in fun and meaningful activities, including music and art therapies, intending to improve well-being and reduce symptoms like anxiety.


Aromatherapy can help to soothe and calm a person especially when they are agitated.

Occupational therapists

The experts will walk with the persons with Lewy body dementia trying to identify easier ways to conduct daily activities like bathing, grooming, and eating to help them retain independence for the longest possible time.

Do not forget to read all the various benefits occupational therapy has on a person with dementia.

Pet therapy

Pets can not only offer companionship, but they can also help boost mood.


lbd counseling
Many people with LBD together with their families need professional help when it comes to processing the changes that will come about after a positive diagnosis.

Professional mental health counselors may come in handy to help people learn how to manage difficult behaviors and emotions. They can also help families and loved ones make sober plans for the future.

Other than counseling, persons with the illness and their relatives and friends can also join a support group where they can get helpful resources they can use to deal with their “new normal.”

Other types of treatment that a Lewy body dementia specialist may vouch for include lifestyle interventions where the suffering person has to eat healthier, get physically active, and remain socially active.

Making adjustments to the living environment, social support, and the use of equipment that make daily life easier are also recommended.

3 Lewy Body Dementia Stages and Progression

lewy body dementia stages

It is important for individuals to know Lewy body dementia stages, especially if you or a loved one is affected by the condition.

This helps you to understand what to expect so that you can tackle it head-on without any unwelcome surprises.

Before we go deep into the stages, let’s get an overview of what Lewy body dementia (LBD) is and its progression.

What is Lewy Body Dementia?

Lewy body dementia is a type of brain disorder where Lewy bodies start to build up in areas of the brain.

These are microscopic deposits that damage the brain and may eventually lead to the death of the brain’s nerve cells.

Lewy bodies are abnormal protein deposits known as alpha-synuclein.

The build-up of these proteins can affect a person’s thinking capacity, movement, bladder and bowel movements, autonomic body functions, and behavior, etc.

A person with Lewy body dementia often showcases symptoms similar to those of Parkinson’s disease. One of the main reasons it is often misdiagnosed as such.

People with Alzheimer’s disease also have Lewy bodies.

The condition is diagnosed through a sequence of tests that include both neurological and physical tests. During these tests, a person’s memory, visuospatial skills, and attention span undergo assessment.

At times, the doctors may also recommend MRI and CT brain scans to confirm the diagnosis along with blood tests.

The disease mostly affects individuals who are above the age of sixty though there are a few cases where a person may get it when they are younger.

Progression of Lewy Body Dementia

progression of lewy body dementia
One of the things that you must note is that Lewy body dementia does not have a straight progression path. It, however, has some characteristics that are likely to show up during the early stages.

Other symptoms also come about when a person already has the illness in the later stages.

What stands out with LBD is that the symptoms often fluctuate.

Many at times a person may function well one day and the next, they experience intense and abrupt memory loss. This can be quite puzzling to people around them, as this may also happen in a single day.

Understanding the fluctuation aspect of the disease is helpful to the person with the condition and those around them as well.

This way, a person will not feel like the affected individual is pretending to forget or like they have moved from one stage of the disease to the next.

While in all honesty, variation in functioning is typically a constant with almost all of the stages of Lewy body dementia.

On average, after diagnosis, people with Lewy body dementia will live for six to twelve years though some live longer, for twenty or more years.

Lewy Body Dementia Stages

With a little bit of information about Lewy body dementia, it’s now time to jump into the stages of the disease. Like many other dementia types out there, the phases are not cast in stone.

This dementia type also tends to develop at a very slow pace.

Different people may have different experiences.

Below we will tackle three stages that a person with Lewy body dementia may go through.

Stage One

During the onset of the disease, there are a few changes that an individual with Lewy body dementia may experience. Some of the early symptoms may include:

  • Hallucinations
  • Restlessness
  • REM sleep disorder where a person acts out dreams
  • Minimal movement difficulties
  • Incontinence
  • Increased day time sleep (two hours plus)
  • Loss of interest and initiative
  • Vision, hearing and speech problems
  • Fluctuations in mood, etc.

At this point, memory is usually still intact, although some mild cognitive changes and slight confusion may be present.

The majority of individuals with LBD can live pretty healthy lives going to work and socializing.

Stage Two

As the disease develops towards the middle Lewy body dementia stages, the symptoms become more prominent. Many people usually start to seek medical attention at this point because the changes in the body become clearer.

The symptoms that people may showcase at this stage strongly mirror those of Parkinson’s disease. They may include:

  • Increased impairment of the motor functions of the body
  • Difficulties swallowing
  • Challenges with speech
  • Diminishing balance and stability
  • Delusions and paranoia becomes worse than before
  • Leaning to one side when sitting, walking, or standing
  • Agitation
  • Capgrass Syndrome (thinking or seeing identical duplicates of objects, people, locations, etc.)
  • Continued cognition decline which may bring about long periods of confusion

Most people at this stage are relatively independent and can perform a majority of daily living activities without needing a hand.

These can include things like taking a bath, eating, and even taking medication though this differs from one individual to the next.

A few individuals may need supervision as they go about their day to day activities, while others may be more dependent on their caregivers.

During this stage, it is also advisable for caregivers to have Medical Power Of Attorney and Power of Attorney document on the person with the disease as it is usually downhill from here.

Individuals with the disease should also collaborate with their family members to identify ways of protecting their wealth and assets.

Some unscrupulous individuals can take advantage of people with the disease and may end up getting away with it if proper protection channels are not put in place.

Stage 3

During the final Lewy body dementia stage, symptoms become worse than what people experience during the early and middle stages.

Many will agree that during this point the illness affects almost every aspect of an individual.

From the way one moves, talks, thinks, and their mood amongst many others.

Some people may complain of extreme sensitivity to touch, as well as muscle rigidity. The speech also becomes difficult with some people whispering while others may not talk at all.

Proper diagnosis at this point is more likely. Other symptoms that a person will possibly showcase are:

  • Higher risk of falls
  • Problems with transfers and ambulation to an extent that one may need a Hoyer Lift, hospital bed, suction machine, or other aids.
  • Stronger autonomic dysfunctions
  • More frequent incontinence episodes of bowel and bladder
  • Impaired speech where volume/projection may significantly decrease
  • Inability to drive
  • Unable to take medications without help
  • Unable to take part in hobbies and other leisure activities a person may have enjoyed before
  • Higher confusion levels
  • Inability to comprehend the passing of time
  • Higher risk of skin breakouts
  • More muscle contractions especially in the arms, and legs
  • Difficulties eating and drinking (a few persons may require feeding tubes
  • Excessive drooling, chocking, and aspiration
  • Sleeping more hours during the daytime and having problems sleeping at night
  • Hallucinations are prevalent but they tend to be less troublesome
  • Mood fluctuations where a person may experience a mixture of anger, anxiety, paranoia, and depression. In such cases, medical monitoring becomes a priority.

It’s also important to note that symptoms from the earlier stages can also show up during this phase.

Many people at this stage cannot function on their own; thus, care becomes a necessity in almost all aspects of their lives.

It may mean that a person may have to resign if they were still working or running their businesses.

Some individuals may respond to simple commands or follow brief conversations without any difficulty.

It’s also worth mentioning that fluctuations may decrease or increase during these final Lewy body dementia stages.

Extra care is essential

Persons may require long-term care to avoid problems that come with a personal safety risk, psychological symptoms, health, and caregiver risk.

This implies that a person may need a professional caregiver who goes to their house regularly.

Alternatively, an individual may move into a senior care facility that offers care services to golden agers who have Lewy body dementia.

This heavily affects the finances of the person with LBD. The illness also causes people to become susceptible to other infections and diseases like pneumonia because the immune system becomes weaker over time.

The introduction of new medical conditions may hit someone hard because some cases end up being fatal.

Closing Remarks

Lewy body dementia is not a rare disease as it affects millions of individuals and their families all over the globe.

Each person, nonetheless, experiences LBD differently. After reading through Lewy body dementia stages, it is worth noting that a majority of the symptoms of the illness are treatable.

Your doctor can prescribe medication that will treat symptoms related to other illnesses like Parkinson’s and Alzheimer’s disease.

These usually offer symptomatic benefits for movement, cognitive, and behavioral problems.

Accurate and early diagnosis of LBD is also essential. This is because the affected person can jump on a comprehensive treatment plan as soon as possible to enhance the quality of life.

People who have Lewy body dementia should not be left to face this disease on their own.

They need all the support they can get from loved ones and professional doctors as well.

Further research on LBD is also required because currently, there is no sure way of preventing or curing Lewy body dementia.

More physician education about the disease is also vital as this will help to reduce the cases of misdiagnosis.

This way, the experts will be able to differentiate the symptoms of Lewy body dementia and other memory-related illnesses.

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