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.

15+ Best Lewy Body Dementia Treatment Options

lewy body dementia treatment

After a person has been diagnosed with Lewy body dementia, the first thing they want to know is the options available in regards to Lewy body dementia treatment.

This is a type of dementia that develops when abnormal protein deposits, also known as Lewy bodies, are found in various areas of the brain.

These round, smooth lumps end up disrupting the normal functioning of the brain.

Sadly, to date, there is still no cure for the condition.

Best Lewy Body Dementia Treatment

There are some treatment options, however, available to help treat specific LBD symptoms, such as:

Use of Medications

There are different types of drugs that specialists can recommend for individuals who have Lewy body dementia as follow.

Cholinesterase Inhibitors

cholinesterase inhibitors
These are medications for Alzheimer’s disease that help to boost the levels of chemical messengers understood to be vital for judgment, memory, and thought in the brain.

Apparently, they enhance cognition and alertness. In some cases, they also help to reduce hallucinations and a host of other behavioral problems.

Drugs that your doctor may prescribe to help with these include Exelon, Razadyne, or Aricept among others.

Parkinson’s disease Medicine

parkinson's disease medicine
Some drugs can help reduce some of the signs and symptoms of Parkinson’s disease like slow movement and rigid muscles. These are drugs like Duopa, Rytary, and Sinemet, etc.

After taking these, you may find that a person can walk better and they experience less muscle stiffness.


This is a drug that works by blocking the effects a person gets when they have excess amounts of glutamate, a chemical in the brain. It is mainly used by individuals who have moderate or severe dementia with Lewy bodies.

It’s also suitable for those who cannot take inhibitors for one reason or another.

Physicians may also recommend medications to treat some of the symptoms and signs that people with Lewy body dementia have.

Some individuals may be put on anti-psychotic drugs or tranquilizers to help lessen agitation.

Those who are facing depression may also get Antidepressants. These may offer solutions for sleep issues or movement problems.

Depending on how the body reacts to the illness, the person with Lewy body dementia may be on one or multiple drugs at the same time.

Before you take any drug to help with the medical condition, it is important to check any side effects they may bring about.

Some of the drugs above may bring about increased delusions, hallucinations, and confusion depending on the drug you are taking.

This is why it is important to consult widely with professionals before you start taking any medication.

Many doctors will start administering the medication in low doses, and if it is beneficial to the person with dementia, they increase the dosage levels over time.

If you experience any side effects, report to the physician immediately so that the professional will advise on whether to discontinue the drug or not.

When using medicine as part of the Lewy body dementia treatment plan, it is advisable to stay away from drugs that have anticholinergic properties.

These may end up making the condition worse because of the numerous adverse side effects they can cause. First-generation antipsychotic medications are also on the list of medications to avoid.

These can cause severe Parkinsonism, confusion, sedation, and can also be fatal.

Non-Drug Treatment Options

non-drug dementia treatment options
Non-drug approaches can also be part of the comprehensive Lewy body dementia treatment plan.

Depending on an individual, one may combine medication and these treatment varieties while others may stick to one type of treatment.

There are several options people have when it comes to non-medicinal treatment options, such as:


People who have Lewy body dementia can benefit from different types of therapies, like:

1. Speech therapy

This can come in handy for individuals who experience poor enunciation and low voice volume. Experts agree that it can also help with swallowing challenges and enhancing muscle strength.

2. Physical therapy

Some of the options available include flexibility, strengthening and cardiovascular exercises as well as gait training.

Doctors may also advise a person with Lewy dementia to be active in a physical fitness program to engage in activities like water exercises, aerobics, and strengthening exercises.

3. Occupational therapy

It is also highly recommended because it may assist in maintaining skills as well as promoting independence and function.

Do not miss our complete overview of the different benefits of occupational therapy.

4. Psychological therapies

These can include cognitive stimulation where a person engages in exercises and other actives that help to enhance language ability, problem-solving skills, and memory.

5. Mental health counseling

This helps persons with dementia with Lewy bodies to learn how to better cope with their emotions and behavior changes.

Complementary Therapies

Lewy body dementia treatment complementary therapies
There are other forms of therapies that can help people who have Lewy body dementia feel better, like:

1. Pet therapy

For most people spending time with pets, they love can be an automatic mood booster. Getting a cat, dog, bird, or any other animal that a person loves can be just what they need to feel better.

2. Supplements and vitamins

Studies suggest that people with dementia with Lewy bodies lack adequate vitamins and nutrients in their bodies, something that can make the illness worse.

Taking adequate supplements and vitamins can help to take care of this problem. Just consult with your physician before taking anything because some of the supplements can interact with the drugs you are taking.

3. Aroma, dance, and music therapy

These usually work to improve an individual’s mood and also reduce anxiety by soothing and calming an individual.

We also created individual articles about aromatherapy, dance therapy and music therapy, where you can learn about all the benefits.

4. Massage

A person may also need professional massages once in a while to help with relaxation.

Home Modifications

home modifications
Although this may not be direct Lewy body dementia treatment options, some changes around the house can help a person with dementia to be more comfortable.

Several things can be done under this including:

1. Reducing clutter

With the help of a professional caregiver, it is crucial to modify the environment where the person with Lewy body dementia will be spending most of their time.

This can include using calming colors and removing things that can distract the person with the illness so that they can function better.

2. Make adjustment

Removing potential trip hazards like loose carpets can be of great help to persons with Lewy body dementia.

It is also vital to make sure that the affected person stays in a well-lit place. Adding handrails and grab bars is also a great idea.

You should also arrange furniture in such a way that it will not get in the way and cause problems.

Other Lewy body dementia treatment options that can be of assistance include:

1. Family psychotherapy

This helps people who want to support the patient with Lewy body dementia to learn how to effectively manage behavioral and emotional symptoms to co-exist well with their loved ones.

2. Getting quality sleep

It is common for people with Lewy body dementia to experience episodes of sleep disturbance.

It is, however, important for caregivers and individuals to try as much as possible to get restful nights as this also helps with treatment.

Some of the things that people can do include napping less during the daytime, engaging in physical exercise and having regular bed-time and waking-up time.

It is also advisable to avoid caffeine and nicotine when you are just about to jump into bed. Keeping the sleeping area quiet at comfortable temperatures can also help a great deal.

3. Stimulating mental functioning

You can do this easily by playing games and puzzles that demand thinking skills.

4. Support group

A person with dementia with Lewy bodies can also join a support group. These allow them to be surrounded by other people who have similar illnesses so that a person does not feel like they are alone.

Sharing experiences of the illnesses can also help one to identify practical solutions that they can use daily to reduce frustrations.

These may also encourage members to take part in exciting activities they like so that they can take their mind off the illness and enjoy life a little bit.

5. Creating routines

Having set structures and routines has been known to be beneficial to people with dementia because it helps to reduce confusion.

It can also help to enhance independence, especially during the first stages of the illness.

Final thoughts

Because people with Lewy body dementia usually experience the condition differently, it is important to be very careful when selecting the ideal Lewy body dementia treatment option.

What may work for one person may end up making your situation worse. Do not self-medicate simply because you read somewhere that there are drugs people with dementia can take to manage symptoms.

Always work with an expert physician who will closely monitor any medication or non-drug treatment you are on to know whether it is good for your body or not.

It’s also essential to conduct thorough research because they are new treatment methods cropping up often.

This will not only help you stay informed, but you can discuss the new developments with your doctor to pick a treatment option that will work for you.

15 Lewy Body Dementia Symptoms [LBD]

lewy body dementia symptoms

It is essential to know the most common and not so common Lewy body dementia symptoms as it can help with treating a person early.

You also need to understand that this type of dementia is, according to statistics, the third most common one. Alzheimer’s disease/dementia and vascular dementia are the only two more frequent.

Fun fact: Robin Williams (August 2014) had Lewy body dementia (LBD), and it is one of the main reasons for suicide.

Someone who is affected by LBD develops problems with thinking, movement, mood, alertness and starts showing signs of depression.

Of course, diagnosing LBD is not as easy as it sounds. There are other brain diseases that also have similar symptoms and are often confused.

What is Lewy body dementia?

Lewy bodies are another name for the significant increase in the creation of proteins that occupy the brain. This same protein is also linked to Parkinson’s disease.

Similarly, those with Lewy body dementia have alike symptoms compared to Alzheimer’s disease.

Moreover, predominantly, more men than women are affected by LBD in their sixties and above. Also, if a family member has Lewy body dementia or Parkinson’s disease, relatives are at higher risk.

Common Lewy Body Dementia Symptoms

1. Changes In Reasoning

Lewy body dementia symptoms - changes in reasoning
Lewy body dementia (LBD) or dementia with Lewy bodies (DLB) presents itself as progressive dementia that affects thinking, independent function, and reasoning.

Abnormal protein deposits that accumulate in certain areas of the brain over time damage its cells over resulting in the condition.

Depending on different circumstances, everyone affected by the condition will display differing symptoms from the onset. A few people experience changes in reasoning seeing them struggle to process information and plan.

Their flow of ideas may become unclear, disorganizer or seem illogical. Changes in behavior are also common when someone with the condition rationalizes things differently.

The person may gravitate towards risky behavior that is out of the norm because of their impaired judgment.

2. Visual Hallucinations

Lewy body dementia symptoms - visual hallucinations
Hallucinations are amongst the most commonly experienced Lewy body dementia symptoms. In fact, about 80% of people with LBD experience hallucinations marked by seeing things that in real sense aren’t present.

In the beginning, someone with the condition will often see animals or children who aren’t present.

Rarely, a few people may also experience nonvisual hallucinations meaning that they respond to smells or hear things that don’t exist.

Often, if the hallucinations aren’t disruptive in nature then there isn’t a cause for concern or treatment isn’t required.

However, if the person begins to respond in harmful or dangerous ways concerning their hallucinations, it’s crucial to seek prescribed medication.

3. Movement Difficulties (Parkinsonism)

movement difficulties parkinsonism
Some people suffering from DLB might never experience movement problems or it could take several years for them to start having this challenge.

It projects itself initially as things like handwriting changes in mild forms that it may easily be overlooked.

Often referred to as Parkinsonism, it describes the set of symptoms experienced during the offset of Parkinson’s disease dementia.

A person can experience the same symptoms with LBD in the later stages.

Some of the other signs that accompany it include:

  • Muscle stiffness
  • Loss of coordination
  • Slow movement when walking
  • Stooped posture
  • Shaking during rest
  • Balancing problems
  • Reduced facial expressions
  • A weakened voice when speaking
  • Difficulties swallowing

4. Changes In Body Function Regulation

changes in body function regulation is a sign of Lewy Body
People with LBD suffer from significant changes affecting the part of their nervous system that is responsible for automatic functions.

It includes functions related to the heart, muscles, and glands.

The Lewy body dementia symptoms that point out to a shift in body function regulation include:

  • Experiencing sudden body temperature changes
  • Heightened sensitivity to cold and heat
  • Dizziness
  • Frequent falls
  • Constipation
  • Blood pressure issues
  • Urinary incontinence
  • A diminished sense of smell

Some people with LBD will start suffering from restless leg syndrome which is a condition that compels them to move their legs while resting.

It may even happen while sleeping and the only way to stop the unpleasant sensation is by moving to relieve the discomfort.

5. Problems With Cognition

problems with cognition a sign of Lewy Body Dementia
A person with LBD will often stare into space for prolonged periods of time and they also usually appear drowsy and lethargic. Problems with cognition is some of the common Lewy body dementia symptoms a majority of people experience.

It’s also identifiable from unpredictable changes in concentration, wakefulness, attention, and alertness throughout the day as well as from day to day.

The person will seem better one day only for them to re-occur the next day or worsen as the days progress. Typically, cognitive fluctuations are some of the symptoms that help physicians distinguish the condition from Alzheimer’s disease.

6. Sleep Problems

sleep problems
Sleep disorders can arise as one of the Lewy body dementia symptoms, but they often go undiagnosed. Visiting a sleep specialist can help with treating sleep problems as well as possibly diagnose the root cause.

Most people with DLB experience insomnia which is attributed to difficulties falling or staying asleep. People with LBD also experience excessive sleeping during the day where the person sleeps for two or more hours.

A few people also exhibit REM disorder which is a condition where someone seems to act out their dreams. In the case of REM, the person might talk while sleeping, display violent movements, and may even fall out of bed.

7. Memory Loss & Dementia

memory loss dementia
Degenerative thinking abilities or severe memory loss marked eventually set in and affect a person’s ability to perform their normal daily activities.

Memory loss is a primary Lewy body dementia symptom and it’s marked by forgetfulness, misidentifying objects, challenges multitasking, reasoning and problem-solving.

Confusion is yet another symptom that accompanies dementia and the person may suddenly have difficulties making sense of time and place.

However, unlike with Alzheimer’s dementia, the memory problems do not manifest at first but they start becoming apparent as LBD progresses.

Dementia can also alter mood and behavior leading the person to start displaying loss of initiative or poor judgment.

8. Inattentiveness and Confusion

inattentiveness and confusion
Related to memory loss, a person with LBD may become more inattentive than usual combined with sudden confusion.

It’s best described as spacing out where someone in a situation that requires their undivided attention wanders off in their thoughts.

Several other symptoms collectively contribute to inattentiveness including difficulties with sleep. Once again it is something that will affect someone’s ability to perform daily tasks and it’s more pronounced for people who are employed.

They often find it difficult to get work done and grasp new information which leads to frustration for the individual and those around them.

As the condition progresses, it also affects both written and spoken speech.

9. Trouble Interpreting Visual Information

trouble interpreting visual information
People with LBD have difficulties processing visual information with regard to object size, perceiving objects as overlapping, and they also display difficulties with counting tasks.

For instance, they may have problems drawing common objects like a clock and the symptom is worse in people who also experience visual hallucinations.

They also have trouble perceiving spatial information leading them to misjudge the distance between objects.

Often, a few of these visual issues can be handled either by prescribing antipsychotic medications or with the help of an eye-care practitioner.

Oftentimes, the diagnosis of visual problems can help in making the correlation to DLB as opposed to other neurodegenerative conditions.

10. Depression

People with LBD have a sense of understanding about the changes that they are experiencing. Before they receive a diagnosis, it can be frustrating trying to understand the root cause of the problems they are experiencing.

Often, they cannot control most of the symptoms on their own and they may feel like a burden to family or friends trying to help them through the challenging time.

It leads them to develop a feeling of sadness and they also start feeling worthless because of their inability to get tasks started or complete them.

Problems with sleep as well as eating only aggravates the situation, and soon people with LBD go into depression.

11. Apathy

Along with depression comes the disinterest in enjoying fun activities or even normal tasks. Apathy as one of the Lewy body dementia symptoms leads someone to withdraw from social interactions. Someone with LBD becomes upset easily, and they often resort to pacing around or wringing their hands because of their inability to feel settled.

They also repeat words or phrases severally which impedes their ability to hold a decent conversation. They can recognize their shortcomings in social settings which makes them rationalize that withdrawing from such situations is the solution.

It becomes more pronounced when the person becomes bedridden perhaps owing to the progression of one of the other symptoms.

12. Unpredictability Of Symptoms

unpredictability of symptoms
One of the striking signs of DLB is the fact that the severity of symptoms changes from time to time. The shifts are often dramatic and someone can never tell when they are going to strike and in what form.

Often, it can give a false sense of hope that someone with the condition is cured only for the symptoms to come back in more severe forms. The shifts in “good days and bad days” makes it somehow easy to recognize that there is an existing health problem.

Subsequently, early diagnosis can come about from catching on to these unusual changes at the very start.

13. The One-Year Rule

the one year rule
Doctors typically use the one-year rule to make a diagnosis distinction between Lewy bodies dementia and Parkinson’s disease.

The rule of thumb is that cognitive difficulties precede movement issues by more than a year when someone has Parkinson’s diseaseis suffering from Parkinson’s disease dementia.

However, in the case of LBD, the cognitive problems may start concurrently with movement problems or within a year of developing issues with cognition.

The symptoms of Lewy bodies dementia are treatable on their own and complete recovery is based on their severity. However, much like all other forms of dementia, there is still no cure for this type of dementia.

14. Staring Into Space/Zoning Out

staring into space
If a person is staring into space, it does not necessarily mean he or she has Lewy body dementia. However, once they keep doing it over and over again, over a longer period of time, you need to start taking things into consideration.

Indeed, staring into space or zoning out is one of Lewy body dementia symptoms, you should be aware of. For your information, they can stare into objects far away or items nearby.

One of the reasons they might begin to stare or completely lose track of what is happening around them is due to hallucinations. We already mentioned the latter above, so please re-read it if necessary.

15. Imperfect Digestive Process

imperfect digestive process
Since Lewy body dementia affects all sorts of different parts of the body, one of the symptoms is an imperfect digestive process. A patient can experience all kinds of inconveniences, like dizziness, constipation and bowel issues.

If the body does not get enough nutrients through quality food, an array of other conditions can occur that can worsen dementia. Not just that, but rapidly speed up the progress.

As a caregiver, it is crucial to understand the ill person’s eating habits even from before the symptoms and the possibility of dementia become a thing.

You should act immediately and take the person to the doctor as soon as possible.

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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