Dementia? Do Pigs Really Fly? Dementia Behavior Can Seem Like Manipulation

Kay Bransford calls her parents the “senior edition of Bonnie and Clyde.” Both have been recently diagnosed with dementia, but have been showing signs of forgetfulness for the past year or two.

Bransford recalls her parents, who have both had their driver’s licenses revoked but continue to drive, telling her the story they’ll tell police if they’re ever pulled over. In that moment, Bransford is certain the couple knows that they’re not allowed to drive, and are defiant about breaking the law. But just minutes later, the couple has forgotten the story completely and they don’t remember even having driver’s licenses. It’s just one of the many stories Bransford has about her parents’ deteriorating behavior. She admits, she sometimes wonders whether her parents are manipulating her and others, and that just adds to the guilt caregivers like her often experience.

“They’re not the parents I knew,” says Bransford, who cares for her 81-year-old mother and 80-year-old father. “It took me a while to realize that. In frustration I thought, ‘Is this the woman my mom really is?’ She’s saying so many things my mom would never have said. I know it’s a manifestation of the disease, but in the moment, I took it personally.”

Amanda Smith, M.D., medical director of the Byrd Alzheimer’s Institute at the University of South Florida estimates that one-quarter of the caregivers she interacts with have concerns similar to Bransford, and they question her about whether their parents are manipulating them.

“Sometimes caregivers assume that (their loved ones) are being manipulative because they just can’t believe their behavior,” she explains. But in reality, people with dementia aren’t able to think through the process of manipulation.

Adds her USF colleague, Eileen Pioley, an Alzheimer’s education director, short-term memory is the first to go for dementia patients. But it’s not uncommon for people to have mixed dementia, with different parts of the brain being affected. In one form of dementia called Lewy Body, memory quickly fluctuates. If a patient has frontotemporal dementia (also known as Pick’s Disease), it effects the part of the brain that filters behavior. So the person may do or say things that are socially inappropriate, but they have no gauge of right or wrong, which is why a loved one may lash out and make hurtful statements.

Additionally, people with dementia often know that they’re losing control and become afraid. Like a child, they act out because they’ve lost the ability to help themselves. Those emotions may also cause a patient to become easily agitated.

Notes Poiley, “The cognitive skills we have, dementia patients lose: logic, reasoning, problem-solving, decision-making. So a patient really couldn’t be manipulative.”

For those taking care of a person with dementia, there are several ways to cope with the conflicting emotions that most caregivers experience.

  1. Don’t take it personally: There is nothing to be gained by thinking your parent is being manipulative. Poiley believes this just adds to a caregiver’s stress. Instead, blame the disease and not the person. Set a goal to maximize and enjoy the time you have with them.
  2. Practice empathy: Kevin Henning, M.D. chief medical director at Amedisys Home Health Care, encourages caregivers to consider what their loved one is going through. “It’s hard for dementia patients to lose independence and it’s scary for them.”
  3. Avoid arguments: “You will not win an argument with a dementia patient. You can try to reason with them but you’ll never get anywhere,” adds Dr. Henning. This advice has been especially helpful for caregiver Kay Bransford, who says she no longer disagrees with her parents on issues she knows are untrue.
  4. Take a break: If you do find yourself arguing with your loved one, walk away for a few minutes. It’s very possible the person with dementia won’t remember the conversation, let alone the argument after a few minutes. It’s also important that as a caregiver, you get respite. “Caregiving is a 24/7 job,” adds Dr. Henning. “You have to get away from it sometimes.” Look into adult daycare for dementia patients, or see if another family member or home healthcare professional can care for your loved one for a few hours, so you can get a break.
  5. Listen and reassure: It can be hard when what a loved one says is illogical, but it’s important to listen and be patient with them. No one chooses to have dementia, so reassure your loved one as best you can that you are there to help them through this journey.
  6. Look for triggers: Try to get to the bottom of what drives your loved one’s behavior, suggests Dr. Smith. It may be environmental factors – for instance, your loved one may be cold, but can’t express that to you. Or your loved one may feel lost and alone. Consider what sparks outbursts or on-going arguments.
  7. Get help: Some medications can be very effective in assisting dementia patients with the anxiety they feel, so be sure to discuss your loved one’s behavior with their doctor or other healthcare professionals. It’s also important to seek emotional assistance as a caregiver when you need it. Find a support group where you can share your experiences and know that others are going through the same thing.
  8. Have a plan: Bransford wishes her parents had made their wishes about caregiving known to her and her siblings before they became ill. If possible, have your loved one consider the pros and cons of assisted living, nursing homes, home health care and other options, and have them decide how they want to spend their final days before their condition deteriorates.

While it’s still not easy for Bransford to reconcile the memory of her parents just a few years ago with their current condition, she considers that acceptance a mourning process. And Bransford likens her parent’s behavior to people who have suffered brain trauma. “I have to remember that they’re not doing things to be mean or cruel – there’s something wrong with their head. It doesn’t always take away the doubt, but it does get easier.”

Dementia: how many types of dementia are known? what are the symptoms?

According to the World Health Organization, an estimated 47.5 million people worldwide are living with this dementia and 7.7 million new cases are diagnosed each year.

Caused by a variety of different mechanisms and illnesses, it is usually chronic and progressive and affects memory, cognitive skills, behavior, and everyday abilities. It is overwhelming for the patient, their family and especially those who provide care.

Caregivers and their elderly parents have many questions and concerns about dementia, so it is important to understand the different types of dementia how they affect the elderly.

Many barriers exist regarding the availability of correct information and resources. This negatively impacts the general public when it comes to diagnosis, care and stigma of the syndrome.

Dementing disorders can be classified in many different ways.

These classifications are used to group disorders that share some common features, such as whether they are progressive or what parts of the brain are affected.

Although the condition primarily affects individuals over age 65, it is not a normal part of getting older.

Some frequently used classifications include the following:

Cortical Dementia: The brain damage primarily affects the brain’s cortex, or outer layer. It tends to cause problems with memory, language, thinking, and social behavior.

Subcortical Dementia: Affects parts of the brain below the cortex. Subcortical types tend to cause changes in emotions and movement in addition to problems with memory.

Progressive Dementia: This type gets worse over time, gradually interfering with more cognitive abilities and daily activities.

Primary Dementia: This type does not result from any other disease. Alzheimer’s disease (AD) is a primary type.

Secondary Dementia: The condition occurs as a result of a physical disease or injury.

Some types fit into more than one of these classifications. For example, AD is considered both progressive and cortical.

Alzheimer’s Disease

Alzheimer’s disease (AD) is the most common cause of dementia in people aged 65 and older. Experts believe that up to 5.3 million people in the United States are currently living with the disease. This means one in ten people over the age of 65 has AD. Hundreds of thousands of Americans are diagnosed with AD each year and it is the sixth leading cause of death in the United States.

In most people, symptoms appear after age 60. It usually causes a gradual decline in cognitive abilities, typically over a span of 7 to 10 years. Nearly all brain functions, including memory, movement, language, judgment, behavior, and abstract thinking, are eventually affected.

AD is characterized by two abnormalities in the brain: amyloid plaques and neurofibrillary tangles. Amyloid plaques found in the tissue between nerve cells are unusual clumps of a protein called beta amyloid along with degenerating bits of neurons and other cells. Neurofibrillary tangles are composed of tau proteins that accumulate within nerve cells in the brain.

Symptoms of AD

In the early stages, people may experience memory impairment, lapses of judgment, and subtle changes in personality. As the disorder progresses, memory and language problems worsen and people begin to have difficulty performing activities of daily living, such as balancing a checkbook or remembering to take medications.

They also may have difficulty navigating an unfamiliar route, become disoriented about places and times, suffer from delusions (such as the idea that someone is stealing from them or that their spouse is being unfaithful), or become short-tempered and hostile.

During the late stages, elders begin to lose the ability to control motor functions. They may have difficulty swallowing and lose bowel and bladder control. They eventually lose the ability to recognize family members and to speak.

It also begins to severely affect the person’s emotions and behavior. Most people eventually develop symptoms such as aggression, agitation, depression, sleeplessness, paranoia or delusions.

How Long Do People with Alzheimer’s Live?

On average, individuals live for 8 to 10 years after they are diagnosed. However, some people may live as long as 20 years. The true cause of death in these patients is often aspiration pneumonia because they lose the ability to swallow late in the course of the disease.

Vascular Dementia

This type is the second most common cause after AD, accounting for an estmated 20 to 30 percent of all dementias. It is caused by brain damage from cerebrovascular or cardiovascular problems (usually strokes).

It also may result from genetic diseases, endocarditis (infection of a heart valve), or amyloid angiopathy (a process in which amyloid protein builds up in the brain’s blood vessels, sometimes causing hemorrhagic or “bleeding” strokes). In many cases, it may coexist with AD.

Symptoms of Vascular Dementia

Affected individuals frequently wander at night and often have other problems commonly found in people who have had a stroke, including depression and incontinence.

Symptoms often begin suddenly, frequently after a stroke. Those at the highest risk have a history of high blood pressure, vascular disease, or previous strokes or heart attacks. It may or may not get worse with time, depending on whether the person has additional strokes. When the disease does get worse, it often progresses in a steps or stages, with sudden changes in ability.

When coupled with brain damage to the mid-brain regions, gradual, progressive cognitive impairment can occur that often strongly resembles AD. Unlike elders with AD, though, these patients often maintain their personality and normal levels of emotional responsiveness until the later stages of the disease.

Types of Vascular Dementia

There are several types, which vary slightly in their causes and symptoms.

Multi-infarct dementia (MID): This type is caused by numerous small strokes in the brain. MID typically includes multiple damaged areas, called infarcts, along with extensive lesions in the white matter, or nerve fibers, of the brain.

Single-Infarct Dementia: Although not all strokes cause cognitive problems, in some cases a single massive stroke can damage a specific area of the brain enough to cause dementia. This is more common when the stroke takes place on the left side (hemisphere) of the brain and/or when it involves the hippocampus, a brain structure important for memory.

Binswanger’s Disease: This is a rare type characterized by damage to small blood vessels in the white matter of the brain (white matter is found in the inner layers of the brain and contains many nerve fibers coated with a whitish, fatty substance called myelin). Binswanger’s leads to brain lesions, loss of memory, disordered cognition, and mood changes.

People with this disease often show signs of abnormal blood pressure, stroke, blood abnormalities, disease of the large blood vessels in the neck, and/or disease of the heart valves. Other prominent features include urinary incontinence, difficulty walking, clumsiness, slowness, lack of facial expression, and speech difficulty.

These symptoms, which usually begin after the age of 60, are not always present in all people and may sometimes appear only temporarily. Treatment of Binswanger’s is symptomatic, and may include the use of medications to control high blood pressure, depression, heart arrhythmias, and low blood pressure. The disorder often includes episodes of partial recovery.

CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarct and leukoencephalopathy): This type is linked to a rare hereditary disorder and is linked to abnormalities of a specific gene, Notch3, which is located on chromosome 19.

This condition causes MID as well as stroke, migraine with aura, and mood disorders. The first symptoms usually appear in people who are in their twenties, thirties or forties and affected individuals often die by age 65. Researchers believe most people with CADASIL go undiagnosed, and the actual prevalence of the disease is not yet known.

Other vascular causes include vasculitis, an inflammation of the blood vessel system; profound hypotension (low blood pressure); and lesions caused by brain hemorrhage. The autoimmune disease lupus erythematosus and the inflammatory disease temporal arteritis can also damage blood vessels in a way that leads to a vascular dementia diagnosis.

Lewy Body Dementia

Lewy Body Dementia (LBD) usually occurs sporadically in people with no known family history of the disease. However, rare familial cases have occasionally been reported. In LBD, cells die in the brain’s cortex, or outer layer, and in a part of the mid-brain called the substantia nigra which plays an important role in movement, learning, reward-seeking and addiction.

Many of the remaining nerve cells in the substantia nigra contain abnormal structures called Lewy bodies that are the hallmark of the disease. Lewy bodies may also appear in the brain’s cortex, or outer layer.

Lewy bodies contain a protein called alpha-synuclein that has been linked to Parkinson’s disease and several other disorders. Researchers, who sometimes refer to these disorders collectively as “synucleinopathies,” do not yet know why this protein accumulates inside nerve cells in LBD.

Symptoms of Lewy Body Dementia

The symptoms of LBD overlap with AD in many ways, and may include memory impairment, poor judgment and confusion. However, LBD typically also includes visual hallucinations, parkinsonian symptoms such as a shuffling gait and flexed posture, and day-to-day fluctuations in the severity of symptoms. People with LBD live an average of 7 years after symptoms begin.

There is no cure for LBD, and treatments are aimed at controlling the parkinsonian and psychiatric symptoms of the disorder. People sometimes respond dramatically to treatment with antiparkinsonian drugs and/or cholinesterase inhibitors, such as those used for AD.

Some studies indicate that neuroleptic drugs, such as clozapine and olanzapine, also can reduce the psychiatric symptoms of this disease. But neuroleptic drugs may cause severe adverse reactions, so other therapies should be tried first and people using these drugs should be closely monitored.

Lewy bodies are often found in the brains of people with Parkinson’s disease and AD. These findings suggest that either LBD is related to these other disorders or that the diseases sometimes coexist in the same person.

Frontotemporal Dementia (FTD)

Sometimes called frontal lobe dementia, FTD describes a group of diseases characterized by degeneration of nerve cells—especially those in the frontal and temporal lobes of the brain. Unlike AD, FTD usually does not include the formation of amyloid plaques. In many people with FTD, there is an abnormal form of tau protein in the brain, which accumulates into neurofibrillary tangles. This disrupts normal cell activities and may cause the cells to die.

Experts believe FTD accounts for two to ten percent of all cases of dementia. Symptoms of FTD usually appear between the ages of 40 and 65. In many cases, those affected have a family history of dementia, suggesting that a strong genetic factor is at play in the disease. The duration of FTD varies, with some patients declining rapidly over two to three years and others showing only minimal changes for many years. People with FTD live with the disease for an average of five to ten years after diagnosis.

Symptoms of FTD

Because structures found in the frontal and temporal lobes of the brain control judgment and social behavior, people with FTD often have problems maintaining normal interactions with others and following social conventions. They may steal or exhibit impolite and socially inappropriate behavior, and they may neglect their normal responsibilities.

Other common symptoms include loss of speech and language abilities, compulsive or repetitive behavior, increased appetite, and motor problems such as stiffness and balance problems. Memory loss may occur, although it typically appears later on in the disease.

Types of FTD

There are a few different types of FTD, each with their own characteristics and symptoms:

Pick’s disease: In this type, certain nerve cells become abnormal and swollen before they die. These swollen or ballooned neurons are one hallmark of the disease. The brains of people with Pick’s also have abnormal structures called Pick bodies, composed largely of the protein tau, inside the neurons.

The cause of Pick’s is unknown, but it runs in some families and thus it is probably due at least in part to a faulty gene or genes. The disease usually begins after age 50 and causes changes in personality and behavior that gradually worsen over time.

The symptoms of Pick’s are very similar to those of AD and may include inappropriate social behavior, loss of mental flexibility, language problems, and difficulty with thinking and concentration. There is currently no way to slow the progressive degeneration found in Pick’s. However, medication may be helpful in reducing aggression and other behavioral problems, and in treating depression.

FTD with Parkinsonism: In some cases, familial FTD is linked to a mutation in the tau gene. This disorder, called FTD with parkinsonism linked to chromosome 17 (FTDP-17), is much like other types of FTD, but often includes psychiatric symptoms such as delusions and hallucinations.

Primary Progressive Aphasia (PPA): This type of FTD may begin to appear in people as young as 40. “Aphasia” is a general term used to refer to deficits in language functions, such as speaking, understanding what others are saying, and naming common objects.

In PPA one or more of these functions can become impaired. Symptoms often begin gradually and progress slowly over a period of years. As the disease progresses, memory and attention may also be impaired and patients may show personality and behavior changes. Many, but not all, people with PPA eventually develop symptoms of dementia.

Mixed dementia: This is a condition in which AD and vascular dementia occur at the same time. Recent studies suggest that mixed dementia is more common than previously thought. Brain changes are characterized by the hallmark abnormalities of AD as well as other types—most commonly vascular and LBD. Some experts recommend suspecting this type whenever a person has both evidence of cardiovascular disease and dementia symptoms that worsen slowly.

Rare Forms of Dementia

Some other types of dementia that can affect elderly people include:

HIV-associated Dementia (HAD): This type results from infection with the human immunodeficiency virus (HIV) that causes AIDS. HAD can cause widespread destruction of the brain’s white matter. This leads to a kind of dementia that generally includes impaired memory, apathy, social withdrawal and difficulty concentrating. People with HAD often develop movement problems as well. There is no specific treatment for HAD, but AIDS drugs can delay the onset and may help to reduce symptoms.

Huntington’s Disease (HD): This is a hereditary disorder caused by a faulty gene for a protein called huntingtin. Children of people with the disorder have a 50 percent chance of inheriting it. The disease causes degeneration in many regions of the brain and spinal cord. Symptoms of HD usually begin when patients are in their 30s or 40s, and the average life expectancy after diagnosis is about 15 years.

Cognitive symptoms of HD typically begin with mild personality changes, such as irritability, anxiety, and depression, and progress to severe dementia. Many patients also show psychotic behavior. HD causes chorea—involuntary jerky, arrhythmic movements of the body—as well as muscle weakness, clumsiness, and gait disturbances.

Dementia Pugilistica: Also called chronic traumatic encephalopathy or Boxer’s syndrome, this type is caused by head trauma, such as that experienced by people who have been punched many times in the head during boxing. The most common symptoms of the condition are dementia and parkinsonism, which can appear many years after the actually trauma ends.

Affected individuals may also develop poor coordination and slurred speech. A single traumatic brain injury may also lead to a disorder called post-traumatic dementia (PTD). PTD is much like dementia pugilistica but usually also includes long-term memory problems. Other symptoms vary depending on which part of the brain was damaged by the injury.

Corticobasal Degeneration (CBD): This is a progressive disorder characterized by nerve cell loss and atrophy of multiple areas of the brain. CBD usually progresses gradually over the course of 6 to 8 years. Initial symptoms, which typically begin at or around age 60, may first appear on only one side of the body but eventually will affect both sides. Some of the symptoms, such as poor coordination and rigidity, are similar to those found in Parkinson’s disease.

Other symptoms may include memory loss, visual-spatial problems, apraxia (loss of the ability to make familiar, purposeful movements), hesitant and halting speech, myoclonus (involuntary muscular jerks), and dysphagia (difficulty swallowing). Death is often caused by pneumonia or other secondary problems such as sepsis (severe infection of the blood) or pulmonary embolism (a blood clot in the lungs).

Creutzfeldt-Jakob Disease (CJD): This rare, degenerative, fatal brain disorder affects about one in every million people per year worldwide. Symptoms usually begin after age 60 and most patients die within one year. Many researchers believe CJD results from an abnormal form of a protein called a prion.

Elderly parents with CJD may initially experience problems with muscular coordination, personality changes, including impaired memory, judgment, and thinking, and impaired vision. Other symptoms may include insomnia and depression. As the illness progresses, mental impairment becomes severe.

Patients often develop myoclonus and they may go blind. They eventually lose the ability to move and speak, and lapse into a coma. Pneumonia and other infections often occur in these patients and eventually lead to death.

There is no one test to determine if someone has dementia. Doctors diagnose AD and other types based on a careful medical history, a physical examination, cognitive testing, laboratory tests, and the characteristic changes in thinking, day-to-day function and behavior associated with each type.

Doctors can make a diagnosis with a high level of certainty, but it is harder to determine the exact type because the symptoms and brain changes of different kinds often overlap. In some cases, a doctor may simply diagnose “dementia” and not specify a type.

Lewy Body Dementia Stages: stormy or calm waters? what can i expect?

Most caregivers are concerned/worried that something is not right.

Symptoms from later stages can also appear this early on the continuum.

At the end of this phase, cognitive impairment is difficult to deny.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

Symptoms and subtle changes may include:

  • Increased daytime sleep: two-plus hours
  • Hallucinations
  • REM sleep disorder
  • Restless Leg Syndrome
  • Sense of smell diminished
  • Vision affected (clarity, comprehension and/or peripheral)
  • Hearing affected (clarity and/or comprehension)
  • Speech difficulty (word-finding, pronunciation, etc)
  • Physical coordination diminished
  • Parkinson’s disease diagnosis
  • Shuffling gait
  • Slowness of movement
  • Cog-wheeling (smooth motions now jerky)
  • Posture altered (stooping or leaning)
  • Chronic runny nose
  • Myoclonic jerking
  • Comprehension issues
  • Ability to learn new tasks affected
  • Short term memory impacted
  • Loss of initiative, interests
  • Alertness varies
  • Thinking/learning/ problem solving difficulties suggest dementia
  • Mood: Depressed/Anxiety
  • Fluctuations in mood
  • Able to engage independently in leisure activities
  • Handwriting is affected (often smaller or less legible)
  • Impairments with financial responsibilities
  • May still be able to maintain employment
  • May be able to hide (mask) symptoms
  • Socialization still possible
  • Driving skills affected
  • May accuse spouse of infidelity
Phase 2 Possibilities

By this point, most caregivers are worried that something is seriously wrong and seek medical attention.

Frequently given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s Disease).

Caregivers consult with an elder law attorney by this point: at very least have a Power of Attorney and Medical Power of Attorney document on the patient.

Protect assets: family, friends, caregivers may be able to take financial advantage of LO.

Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.

Symptoms are usually clearer by this point:

  • Balance and stability diminished
  • 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 when standing, walking and seated
  • Parkinson’s symptoms controlled with medication
  • Able to perform most ADLs without assistance

Increased difficulty with:

  • Finding words (aphasia)
  • Organizing thoughts
  • Reading & comprehension
  • Following TV programs
  • Operating home appliances
  • May be able to administer own medications
  • Able to follow core content of most conversations
  • Able to be left unsupervised for two or more hours
  • Delusions more firmly held
  • Capgrass Syndrome (seeing or thinking there are identical duplicates of people, locations, objects, etc)
  • Depressed mood
  • Paranoia
  • Agitation
Phase 3 Possibilities

Correct diagnosis by this point more likely. Caregiver and patient actively grieve. Caregivers may need home health aide assistance to maintain LO in the home.

Caregiver needs regular planned respite to maintain their own health.

Caregiver health issues often arise and require health care.

Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety and health risks.

The needs of the patient significantly affect personal finances.

(Note: Symptoms from later or earlier stages can also 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 4 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.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

  • 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 5 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.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

  • 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

Lewy Body Dementia: time to prepare for late stage and to be equipped for it

Please be aware that some of our posts may be upsetting and even shocking to those seeking information on Lewy Body Dementia.

Families and carers alike seek information on the condition, but some loved ones are also searching for the more unpleasant facts, no matter how stressful these can be to read sometimes, they just need to know what to expect.

Please keep in mind that not everybody with Lewy Body Dementia experiences the same symptoms, and in most cases the symptoms that they do experience, or do not experience, differ also.

Never accept anything of what you read on the internet or in this blog as absolute fact, and (always) seek medical advice from a qualified practitioner.   

Dementia with Lewy bodies gets its name from microscopic deposits that are found in the brains of people with the condition.

These deposits cause damage to, and the eventual death of, nerve cells in the brain.

Dementia with Lewy bodies develops slowly and tends to progress gradually, like Alzheimer’s disease.

Parkinson’s disease is also caused by Lewy bodies and some symptoms of this disease are shared with dementia with Lewy bodies.

Early symptoms of this type of dementia may also overlap with those of Alzheimer’s disease, but there are several important differences.

Unlike Alzheimer’s disease, in the early stages of dementia with Lewy bodies the person’s attention and alertness often vary widely from day to day, or even during the course of a single day.

This can often be puzzling for those around them.

Most people with dementia with Lewy bodies also have recurrent visual hallucinations.

These are much more common than in early Alzheimer’s disease and are very detailed, often of animals or people.

Misperceptions and auditory hallucinations (hearing sounds that are not real) are also very common.

These symptoms may explain why people with this dementia often falsely believe that they are being persecuted.

Half or more of those affected by dementia with Lewy bodies have movement problems when the dementia is diagnosed, and this proportion increases as dementia progresses.

These symptoms are like those of Parkinson’s disease, such as slowness of movement, stiffness and sometimes tremor.

The person may also have difficulty judging distances and be prone to problems with balance, falls and fainting.

As dementia with Lewy bodies progresses, some of the symptoms become more like those of middle or late stage Alzheimer’s disease, including greater problems with day-to-day memory and behaviours that challenge, such as agitation, restlessness or shouting out.

Worsening of Parkinson-type symptoms means that walking gets slower and less steady.

The risk of falls remains high. The combination of symptoms in a person with dementia with Lewy bodies can be particularly stressful for family and carers.

After the symptoms of dementia with Lewy bodies begin, people live on average for six to twelve years.

However, each person will experience dementia with Lewy bodies differently.

It’s a sad fact, but Lewy body dementia is a progressive disease.

This means that those who have the condition will eventually reach its end stages.

For those who care for someone with Lewy body dementia, this is an upsetting prospect.

But there are things you can do to deal with this.

Here you’ll find information on what symptoms are typical of late stage Lewy body dementia, and advice on how to deal with these symptoms…

All of the different types of dementia begin to look fairly similar once they reach their final stages.

However, there are some symptoms that distinguish late-stage Lewy body dementia from other dementia types.

These are explained below…

Mental symptoms

Although in the early stages of Lewy body dementia, memory difficulties are not a common symptom, by the late stages memory does become affected too.

However, unlike other forms of dementia, people with Lewy body dementia experience fluctuations in their cognition and memory.

They may have periods of lucidity, even right at the end.

Hallucinations and delusions are common in the early and middle stages of the condition, but these become much more frequent by the late stages.

Attention difficulties are also very typical of late-stage Lewy body dementia.

Anxiety, depression and aggressive behaviour can become apparent in someone with late-stage Lewy body dementia, as well as emotional lability.

Emotional lability means having emotions that change very quickly.

One moment they may seem fine, the next they may be in tears, then as quickly as the tears came they may be gone again.

A person with advanced Lewy body dementia will have extreme rigidity.

This means that their muscles will be very tense and stiff.

This will make it very difficult for them to move.

They will require help for most activities because of this, including bathing and dressing.

Sensitivity to touch is also a common symptom.

They may find even very gentle touch extremely uncomfortable.

Lewy body dementia affects a person’s ability to move their facial muscles, making speech very difficult.

Towards the later stages, they will have little to no verbal communication.

The speech that they may have will be extremely quiet and highly unintelligible.

By this point, the person will also have a very impaired swallow, making eating and drinking extremely difficult.

How to deal with the later stages

Of course, when a loved one reaches the final stages of Lewy body dementia, this is a very upsetting time.

However, there are some things you can do to make this period a little easier to cope with…

Educate yourself and others around you

Although Lewy body dementia is the third most common form of dementia behind Alzheimer’s disease and vascular dementia, it is still widely unknown (although it’s actually thought to be the second most common form, due to the frequency of misdiagnosis).

Many people don’t know what the symptoms are, and even more aren’t aware that it even exists.

Because of this, it’s important that you educate yourself and others who come into contact with your loved one, about the symptoms of Lewy body dementia, so that everyone knows what to expect.

For example, if you weren’t aware that people with Lewy body dementia can have periods of lucidity when their cognition improves, you may have false hope that they might get better, only to have this hope dashed when their cognition worsens again.

Knowing that your loved one may have periods of lucidity when they are able to recognise you can allow you to use this time to talk to your loved one and say goodbye.

This may help to give you some closure.

Consult appropriate professionals

A common cause of death in someone with Lewy body dementia is aspiration pneumonia.

This means a severe chest infection which is caused by food or drink entering the lungs, as a result of a weak swallow.

Make sure you consult a speech and language therapist who will be able to advise on the safest consistency of food for your loved one to eat.

This will help to reduce the risk of aspiration pneumonia.

A dietician will also be able advise on the types of food your loved one should be eating, in order to keep their weight up and avoid malnutrition.

This will help to fight off infections which are the most typical cause of death in a person with Lewy body dementia.

A speech and language therapist may also be able to provide strategies and tools to help make communication easier.

This will help to avoid confusion and frustration between you and your loved one.

Please Read Mortality – Approaching Death

Find support

No one should have to struggle alone.

Caring for someone with a progressive condition like Lewy body dementia is both mentally and physically draining.

Make sure you’re getting all the support you’re entitled to, both financial and emotional.

Depending on your loved one’s circumstances, you may be entitled to financial support from your local authority to pay for carers.

At some point, you may be considering a care home for your loved one.

Read these blog posts on when is it time to consider a care home for your loved one with dementia and what to do when you can no longer care for a loved one with dementia, for more information.

 

World Dementia Council Global Care Statement

 

Statement on Importance of Care and Support

World Dementia Council

All persons affected by dementia – those living with
the diseases that cause it, their care partners, and their
family and friends – have a right to receive the highest
quality care and support possible to meet their needs.

They have the human right to be treated with dignity
and respect. And they are entitled to full and effective
participation and inclusion in society.

These rights transcend national boundaries and cultures.

Person-centered, high-quality care and support
should respond to the unique, individual needs of
each person and include rehabilitation and disability
support.

It should be delivered by well-trained
individuals, whether professionals or family and friend
care partners.

Such care and support can result in improved health
outcomes and quality of life, enhanced comfort, and
decreased stress for persons living with dementia.

For their care partners, it can enhance their health
and strengthen the informal support system. And, by
lessening the burden on health and long-term care
systems, it can help to lower costs.

Principles of High-Quality Care and Support

To ensure the right to high-quality care and support for people living with dementia and their care partners,

the following principles should guide the provision of care and support in all countries:

1. Individuals receive a timely and accurate diagnosis
– and are told of that diagnosis and its realistic
consequences. This is the gateway to making
informed personal life decisions and decisions about
medical treatment.

2. People living with dementia are entitled to respect
and dignity with full recognition that dementia in
no way diminishes the personhood of the individual
who has it.

3. Communities are inclusive of people living with
dementia, thus ensuring the opportunity for
participation and engagement by those living with
dementia, and empowering and enabling them to
remain in the community as long as possible.

4. Care is person- and relationship-centered.
Person-centered care is a philosophy of care
based on knowing the person, developing and
maintaining authentic relationships, providing
a supportive, culturally-sensitive environment
that includes opportunities for meaningful
engagement, and recognizing the person’s reality
and individual needs.

5. The provision of person-centered care is based on
continuous assessment and individualized care
planning designed to maximize independence,
develop effective strategies for communication,
minimize behavioral and psychological symptoms,
and identify available support for people living with
dementia and their care partners.

6. People living with dementia and their care partners
are involved as active participants in care planning
and decision making and have access to information
and support throughout the continuum of their
disease from diagnosis to end of life.

7. Medical and care professionals have adequate
knowledge of all aspects of dementia and work
across disciplines to ensure a holistic approach to
disease management. This will ensure that people
living with dementia are provided appropriate
medical care, psychosocial care, and disability
support – for both their dementia and their
co-morbid conditions – throughout the course of
the disease.

8. Care coordination and collaboration occurs
between all care providers, including medical and
allied health and social care professionals, health
systems, family care partners, paid caregivers,
community services, and volunteers. Governments,
non-governmental organizations (NGOs), and
patient advocacy groups have an important role
in building collaboration among care providers
and in monitoring and evaluating the care and
support provided.

Multiple Dementia Types: Diseases Descriptions Symptoms

 

Dementia is a broad term used to describe a group of symptoms that occur when brain cells stop working properly. It is certain diseases that damage the brain and cause dementia.

This post will explain the different dementia types, their symptoms, progression and where to go for further advice and support.

 

Alzheimer’s disease

Overview

Alzheimer’s disease is the most common cause of dementia, affecting around 500,000 people in the UK.

It is a progressive disease that develops slowly over time and in early stages, it can be difficult to distinguish Alzheimer’s from mild forgetfulness, which can be seen in normal ageing.

People with Alzheimer’s have a shortage of some important chemicals in their brain. These chemical messengers help to transmit signals around the brain and when there is a shortage of them, the signals are not transmitted as effectively.

Over time, more parts of the brain become more damaged and the symptoms become more severe.

The symptoms of Alzheimer’s disease can be broken down into earlier symptoms and later symptoms.

Symptoms

Typical early symptoms of Alzheimer’s may include:

  • Forgetting recent events, names and faces
  • Becoming increasingly repetitive, e.g. repeating questions after a very short interval
  • Misplacing items or putting them in odd places
  • Uncertainty about the date or time of day
  • Unsure of their whereabouts or getting lost, particularly in unusual surroundings
  • Becoming low in mood, anxious or irritable, losing self-confidence or showing less interest in what’s happening

The rate at which Alzheimer’s progresses is different with every person. As it progresses, more symptoms may occur or worsen, such as:

  • Degraded ability to remember, think and make decisions
  • Communication and language become more difficult
  • Difficulty recognising familiar faces or household objects
  • Difficultly in day-to-day tasks, for example eating, dressing, using a TV remote control, phone or kitchen appliance
  • Some people become sad, depressed or frustrated about the challenges they face. Anxieties are also common and people may seek extra reassurance or become fearful or suspicious
  • People may experience hallucinations, where they may see things or people that aren’t there
  • People may become increasingly unsteady on their feet and are at greater risk of falling

Current treatments do not unfortunately stop the disease, but medication is available to those with Alzheimer’s that helps to delay the decline of memory loss, thinking, language and thought process.

Different options to ease the symptoms can be discussed with your GP.

Vascular dementia

Overview

Vascular dementia is the most widely recognised as the second most common cause of dementia and can occur when blood flow to the brain becomes reduced.

In some cases, people may have both vascular dementia and Alzheimer’s – this is known as mixed dementia.

Vascular dementia is sometimes given more specific names based on the changes in the brain that cause it. The most common of these are:

  • Stroke-related dementia – vascular dementia that develops after a stroke (called post-stroke dementia) or after a series of small strokes (called multi-infarct dementia).
  • Subcortical vascular dementia – vascular dementia that is caused by changes to very small blood vessels in the brain (often referred to as small vessel disease).

The speed of progression for vascular dementia varies from person to person and there may be a sudden change in progression after events such as a stroke.

Symptoms

Vascular dementia can have symptoms similar to Alzheimer’s and other forms of dementia.

Symptoms of vascular dementia include memory loss, disorientation and problems with communication. In addition to this, there may also be more specific symptoms and these may differ depending on the area of the brain that is affected.

These may include:

  • Thinking skills – taking more time to process information and having problems with attention, planning and reasoning.
  • Personality changes – these may include depression and losing interest in things. People may also become more emotional.
  • Movement problems – difficulty walking or changes in the way a person walks.
  • Bladder problems – frequent urge to urinate or other bladder symptoms. This can be common in older age, but can be a feature of vascular dementia when seen with other symptoms.

The symptoms of vascular dementia get worse over time. In the later stages, the symptoms become more widespread and people need help eating, dressing and toileting.

Similar to Alzheimer’s, there is currently no specific treatment available, however you can go to your doctor to discuss medication and other methods to reduce the rate of the symptoms.

Dementia with Lewy bodies

Overview

Dementia with Lewy bodies (DLB) is thought to be the actual second most common dementia, due to high instances of wrongly diagnosing the condition as something else, such as Parkinson’s disease.

It is caused by small round clumps of a protein that build up inside nerve cells in the brain. The proteins formed are called Lewy bodies and they damage the way nerve cells work.

In DLB, the nerve cells that are affected by Lewy bodies are in areas of the brain that control thinking, memory and movement.

People with DLB can also show some changes in the brain that are typical of Alzheimer’s. This sometimes makes it hard to tell the difference between the two diseases.

Symptoms

In DLB, there are some more specific symptoms associated with the disease.

These symptoms include:

  • Unpredictable changes in alertness, attention and confusion
  • Parkinson’s disease-type symptoms such as slowed movements, muscle stiffness and tremors
  • Visual hallucinations – seeing things that are not really there
  • Sleep disturbances – acting out dreams or shouting out while sleeping, which can disrupt sleep and potentially cause injury
  • Fainting, unsteadiness and falls

DLB is a progressive condition, which means symptoms get worse over time. As the disease progresses, people will need increasing help with eating, moving, dressing and toileting.

DLB can progress slowly over several years but the speed of progression and type of symptoms can vary from person to person.

Frontotemporal dementia

Overview

Frontotemporal dementia (FTD) is caused by damage to cells in areas of the brain called the frontal and temporal lobes.

The frontal lobes regulate our personality, emotions and behaviour, as well as reasoning, planning and decision-making.

The temporal lobes are involved in the understanding and production of language. This can cause different types of FTD:

  • Behavioural variant frontotemporal dementia – parts of the frontal lobe that regulate social behaviour may be most affected.
  • Semantic dementia – parts of the temporal lobe that support understanding of language and factual knowledge are most affected.
  • Progressive non-fluent aphasia – parts of the frontal and temporal lobes that control speech are most affected.

Symptoms

Early symptoms of FTD vary from person to person and depend on which area of the brain is affected. Symptoms may include:

  • Personality changes – may include change in how people express their feelings towards others or a lack of understanding of other people’s feelings
  • Lack of personal awareness – may fail to maintain their normal level of personal hygiene and grooming
  • Lack of social awareness – may include making inappropriate jokes, or showing a lack of tact
  • Changes in food preference, over-eating or over-drinking
  • Behaviour changes – humour or sexual behaviour may change
  • Difficulty with simple plans and decisions
  • Communication difficulties
  • Difficulty recognising people or knowing what objects are for
  • Day-to-day memory may be relatively unaffected in the early stages, but problems with attention and concentration could give the impression of memory problems
  • Movement problems – this may include stiff or twitching muscles, muscle weakness and difficulty swallowing

Symptoms get worse over time, gradually leading to more widespread problems with day-to-day function. Some people may develop motor problems similar to those seen in Parkinson’s.

Over time people with FTD can find it harder to swallow, eat, communicate and move. The speed of change can vary widely but as time progresses they will require more support to look after themselves.

Dementia advice and support

Whichever type of dementia you may be dealing with, there is always help and support available.

Accessing services and support can make a real and positive difference to someone with dementia and their family.

Some services are provided by local authorities and others can be arranged through GPs. The type of services available may vary depending on where you live, but can include home, day and respite care.

There’s also a range of technology available that can be invaluable to those living with dementia.

In addition to this, we’ve listed some of our favourite dementia charities that can help you out, regardless of the dementia type.

We hope this information has been helpful for understanding the different dementia types and always remember that there is help and support on hand.

 

 

Lewy Body Dementia Prepare For Rapid Decline In Condition.

Lewy Body Journal

Hi all.

I was so pleased to find this site and I would like to share our experience with you. On the 21st of April In 2010 I decided to give my husband a surprise 70th birthday party and this was the first time I had noticed anything odd about his actions.

(Although on reflection I had noticed he was a bit stooped and walked with a slight shuffle and was, I thought, a little bit depressed.)

My friend and I came up with the idea that she was going to treat him to an Abba concert at the venue we were having the party.

My hubby loves Abba and was not suspicious, although he said he hadn’t seen it advertised. We were to be out for dinner at seven and were being picked up at six thirty.

I went to the venue in the afternoon to put some final touches to tables and at about three thirty I received a call from him in an agitated state to see where I was.

This was not unusual as he is a quite possessive man and liked to know where I was most of the time anyway and I took no notice.

I arrived home by four and he was in a state, wanting to get ready or we would be late. (He always has to be anywhere a half hour early.)

He said he would get dressed and I persuaded him to wait a while as he was bound to pick up his little dog or spill something on his clothes. However he couldn’t wait and I came in from outside to find him in the bedroom dressed except for his belt.

He was holding it and looking at it as though he didn’t know what to do with it. I might say this really scared me as I thought he may have had a mini-stroke or something.

I went to him and took it and said can’t you find the right side and he said no and I showed him and he asked me to put it on.

This put a bit of a damper on the evening and I dare say the shock of seventy people screaming HAPPY BIRTHDAY may not have helped either.

My husband is a handsome man and was an electrician by trade and very clever.

I could not help but notice that night he looked older than his seventy years and sometimes seemed a bit vague and insecure and kept coming up to me as though he needed me near him.

After all of our family and guests had left to go home over the next two days, I really kept a closer eye on him. I noticed a slight tremor in his hands. I asked him about this and he said he had noticed it too. I also asked him if he felt depressed and he said yes.

My husband had a fall from a ladder about five years ago and shattered his heel.

At the time he used to breed and show budgerigars very successfully and loved his birds. He had to sell them as I worked and couldn’t look after our large lawns, garden and the birds as well.

I loved them too and we were both extremely sad to see them go but he had to have lots of operations on his foot.) My hubby loved fishing and golf and had to give them all up as he lost confidence and I put his depression down to losing all of his pastimes.

I know when I gave up work I found myself depressed but I found things to occupy my time whereas he was happy to sit around.

Getting back to his depression, we went to his GP who prescribed antidepressants.

These in fact made him quite ill. I asked his GP if it could be Parkinson’s Disease as I had looked it up and read a lot and he quickly told me it wasn’t, it was just depression and he needed to get out and do things.

I partially agreed with the making himself busy bit but my gut feeling was telling me there was something else wrong. We had been married for almost fifty years and I know him very well.

For twelve months we kept on but the GP was relentless that it was depression.

We were visiting him at least twice a week and my husband wouldn’t change. Suddenly one day the GP out of the blue said I think you have Parkinson’s.

I was gob smacked and never felt more like slapping someone than I did then.

It took nine months for us to be able to see a neurologist and he confirmed Parkinson’s Disease.

He said that some people also developed Dementia and I knew deep in my heart that my man was going to be one of them.

It wasn’t until April 2013 that we received the news that he had Lewy Bodies and were told to  – (prepare for a rapid decline in his condition).

I was shattered as the father of a friend of mine had passed away in June 2012 with this dreadful disease.

He too was diagnosed with Parkinson’s five years earlier and then Lewy Bodies three years later.

It is true the decline has been rapid with hallucinations and anxiety among the many changes.

Obsession with our little dog who he can’t bear to be away from.

I have had to give up my part time job (which happened to be at a funeral home) mainly because he didn’t like me out of his sight, and also I volunteered at the local hospital. I loved both of these jobs and miss them, but I felt his self security was more important.

He is obsessed with money and is afraid of not having enough for when we are older. He doesn’t understand his prognosis is not good.

He is always pulling cotton out of his food and sees it coming out of the heater.

We have ants and spiders crawling all over the floor and people in the room with us but he doesn’t talk to them. He can not count money, use the remote controls or the telephone.

He was once a beautiful hand writer but alas that has gone — now his writing is legible but just. I, like many others who have written in, believe his symptoms started as far back as twenty years ago — that was when the nightmares were happening.

Thank you for giving me the chance to talk about our life as it is, as my family are finding it hard to deal with and tell me “I am exaggerating, he is not as bad as I’m making out.”

I understand they are probably in denial as it is all so sad.

KIND REGARDS AND THOUGHTS OF EVERYONE WHO HAS WRITTEN IN, JVS

Letter of Susan Schneider Williams Widow of Robin Williams

I am writing to share a story with you, specifically for you. My hope is that it will help you understand your patients along with their spouses and caregivers a little more. And as for the research you do, perhaps this will add a few more faces behind the why you do what you do. I am sure there are already so many.

This is a personal story, sadly tragic and heartbreaking, but by sharing this information with you I know that you can help make a difference in the lives of others.

As you may know, my husband Robin Williams had the little-known but deadly Lewy body disease (LBD). He died from suicide in 2014 at the end of an intense, confusing, and relatively swift persecution at the hand of this disease’s symptoms and pathology. He was not alone in his traumatic experience with this neurologic disease. As you may know, almost 1.5 million nationwide are suffering similarly right now.

Although not alone, his case was extreme. Not until the coroner’s report, 3 months after his death, would I learn that it was diffuse LBD that took him. All 4 of the doctors I met with afterwards and who had reviewed his records indicated his was one of the worst pathologies they had seen. He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem.

Robin is and will always be a larger-than-life spirit who was inside the body of a normal man with a human brain. He just happened to be that 1 in 6 who is affected by brain disease.

Not only did I lose my husband to LBD, I lost my best friend. Robin and I had in each other a safe harbor of unconditional love that we had both always longed for. For 7 years together, we got to tell each other our greatest hopes and fears without any judgment, just safety. As we said often to one another, we were each other’s anchor and mojo: that magical elixir of feeling grounded and inspired at the same time by each other’s presence.

One of my favorite bedrock things we would do together was review how our days went. Often, this was more than just at the end of the day. It did not matter if we were both working at home, traveling together, or if he was on the road. We would discuss our joys and triumphs, our fears and insecurities, and our concerns. Any obstacles life threw at us individually or as a couple were somehow surmountable because we had each other.

When LBD began sending a firestorm of symptoms our way, this foundation of friendship and love was our armor.

The colors were changing and the air was crisp; it was already late October of 2013 and our second wedding anniversary. Robin had been under his doctors’ care. He had been struggling with symptoms that seemed unrelated: constipation, urinary difficulty, heartburn, sleeplessness and insomnia, and a poor sense of smell—and lots of stress. He also had a slight tremor in his left hand that would come and go. For the time being, that was attributed to a previous shoulder injury.

On this particular weekend, he started having gut discomfort. Having been by my husband’s side for many years already, I knew his normal reactions when it came to fear and anxiety. What would follow was markedly out of character for him. His fear and anxiety skyrocketed to a point that was alarming. I wondered privately, Is my husband a hypochondriac? Not until after Robin left us would I discover that a sudden and prolonged spike in fear and anxiety can be an early indication of LBD.

He was tested for diverticulitis and the results were negative. Like the rest of the symptoms that followed, they seemed to come and go at random times. Some symptoms were more prevalent than others, but these increased in frequency and severity over the next 10 months.

By wintertime, problems with paranoia, delusions and looping, insomnia, memory, and high cortisol levels—just to name a few—were settling in hard. Psychotherapy and other medical help was becoming a constant in trying to manage and solve these seemingly disparate conditions.

I was getting accustomed to the two of us spending more time in reviewing our days. The subjects though were starting to fall predominantly in the category of fear and anxiety. These concerns that used to have a normal range of tenor were beginning to lodge at a high frequency for him. Once the coroner’s report was reviewed, a doctor was able to point out to me that there was a high concentration of Lewy bodies within the amygdala. This likely caused the acute paranoia and out-of-character emotional responses he was having. How I wish he could have known why he was struggling, that it was not a weakness in his heart, spirit, or character.

In early April, Robin had a panic attack. He was in Vancouver, filming Night at the Museum 3. His doctor recommended an antipsychotic medication to help with the anxiety. It seemed to make things better in some ways, but far worse in others. Quickly we searched for something else. Not until after he left us would I discover that antipsychotic medications often make things worse for people with LBD. Also, Robin had a high sensitivity to medications and sometimes his reactions were unpredictable. This is apparently a common theme in people with LBD.

During the filming of the movie, Robin was having trouble remembering even one line for his scenes, while just 3 years prior he had played in a full 5-month season of the Broadway production Bengal Tiger at the Baghdad Zoo, often doing two shows a day with hundreds of lines—and not one mistake. This loss of memory and inability to control his anxiety was devastating to him.

While I was on a photo shoot at Phoenix Lake, capturing scenes to paint, he called several times. He was very concerned with insecurities he was having about himself and interactions with others. We went over every detail. The fears were unfounded and I could not convince him otherwise. I was powerless in helping him see his own brilliance.

For the first time, my own reasoning had no effect in helping my husband find the light through the tunnels of his fear. I felt his disbelief in the truths I was saying. My heart and my hope were shattered temporarily. We had reached a place we had never been before. My husband was trapped in the twisted architecture of his neurons and no matter what I did I could not pull him out.

In early May, the movie wrapped and he came home from Vancouver—like a 747 airplane coming in with no landing gear. I have since learned that people with LBD who are highly intelligent may appear to be okay for longer initially, but then, it is as though the dam suddenly breaks and they cannot hold it back anymore. In Robin’s case, on top of being a genius, he was a Julliard-trained actor. I will never know the true depth of his suffering, nor just how hard he was fighting. But from where I stood, I saw the bravest man in the world playing the hardest role of his life.

Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating? And not from something he would ever know the name of, or understand? Neither he, nor anyone could stop it—no amount of intelligence or love could hold it back.

Powerless and frozen, I stood in the darkness of not knowing what was happening to my husband. Was it a single source, a single terrorist, or was this a combo pack of disease raining down on him?

He kept saying, “I just want to reboot my brain.” Doctor appointments, testing, and psychiatry kept us in perpetual motion. Countless blood tests, urine tests, plus rechecks of cortisol levels and lymph nodes. A brain scan was done, looking for a possible tumor on his pituitary gland, and his cardiologist rechecked his heart. Everything came back negative, except for high cortisol levels. We wanted to be happy about all the negative test results, but Robin and I both had a deep sense that something was terribly wrong.

On May 28th, he was diagnosed with Parkinson disease (PD).

We had an answer. My heart swelled with hope. But somehow I knew Robin was not buying it.

When we were in the neurologist’s office learning exactly what this meant, Robin had a chance to ask some burning questions. He asked, “Do I have Alzheimer’s? Dementia? Am I schizophrenic?” The answers were the best we could have gotten: No, no, and no. There were no indications of these other diseases. It is apparent to me now that he was most likely keeping the depth of his symptoms to himself.

Robin continued doing all the right things—therapy, physical therapy, bike riding, and working out with his trainer. He used all the skills he picked up and had fine-tuned from the Dan Anderson retreat in Minnesota, like deeper 12-step work, meditation, and yoga. We went to see a specialist at Stanford University who taught him self-hypnosis techniques to quell the irrational fears and anxiety. Nothing seemed to alleviate his symptoms for long.

Throughout all of this, Robin was clean and sober, and somehow, we sprinkled those summer months with happiness, joy, and the simple things we loved: meals and birthday celebrations with family and friends, meditating together, massages, and movies, but mostly just holding each other’s hand.

Robin was growing weary. The parkinsonian mask was ever present and his voice was weakened. His left hand tremor was continuous now and he had a slow, shuffling gait. He hated that he could not find the words he wanted in conversations. He would thrash at night and still had terrible insomnia. At times, he would find himself stuck in a frozen stance, unable to move, and frustrated when he came out of it. He was beginning to have trouble with visual and spatial abilities in the way of judging distance and depth. His loss of basic reasoning just added to his growing confusion.

It felt like he was drowning in his symptoms, and I was drowning along with him. Typically the plethora of LBD symptoms appear and disappear at random times—even throughout the course of a day. I experienced my brilliant husband being lucid with clear reasoning 1 minute and then, 5 minutes later, blank, lost in confusion.

Prior history can also complicate a diagnosis. In Robin’s case, he had a history of depression that had not been active for 6 years. So when he showed signs of depression just months before he left, it was interpreted as a satellite issue, maybe connected to PD.

Throughout the course of Robin’s battle, he had experienced nearly all of the 40-plus symptoms of LBD, except for one. He never said he had hallucinations.

A year after he left, in speaking with one of the doctors who reviewed his records, it became evident that most likely he did have hallucinations, but was keeping that to himself.

It was nearing the end of July and we were told Robin would need to have inpatient neurocognitive testing done in order to evaluate the mood disorder aspect of his condition. In the meantime, his medication was switched from Mirapex to Sinemet in an effort to reduce symptoms. We were assured Robin would be feeling better soon, and that his PD was early and mild. We felt hopeful again. What we did not know was that when these diseases “start” (are diagnosed) they have actually been going on for a long time.

By now, our combined sleep deficit was becoming a danger to both of us. We were instructed to sleep apart until we could catch up on our sleep. The goal was to have him begin inpatient testing free of the sleep-deprived state he was in.

As the second weekend in August approached, it seemed his delusional looping was calming down. Maybe the switch in medications was working. We did all the things we love on Saturday day and into the evening, it was perfect—like one long date. By the end of Sunday, I was feeling that he was getting better.

When we retired for sleep, in our customary way, my husband said to me, “Goodnight, my love,” and waited for my familiar reply: “Goodnight, my love.”

His words still echo through my heart today.

Monday, August 11, Robin was gone.

After Robin left, time has never functioned the same for me. My search for meaning has replicated like an inescapable spring throughout nearly every aspect of my world, including the most mundane.

Robin and I had begun our unplanned research on the brain through the door of blind experience. During the final months we shared together, our sights were locked fast on identifying and vanquishing the terrorist within his brain. Since then, I have continued our research but on the other side of that experience, in the realm of the science behind it.

Three months after Robin’s death, the autopsy report was finally ready for review. When the forensic pathologist and coroner’s deputy asked if I was surprised by the diffuse LBD pathology, I said, “Absolutely not,” even though I had no idea what it meant at the time. The mere fact that something had invaded nearly every region of my husband’s brain made perfect sense to me.

In the year that followed, I set out to expand my view and understanding of LBD. I met with medical professionals who had reviewed Robin’s last 2 years of medical records, the coroner’s report, and brain scans. Their reactions were all the same: that Robin’s was one of the worst LBD pathologies they had seen and that there was nothing else anyone could have done. Our entire medical team was on the right track and we would have gotten there eventually. In fact, we were probably close.

But would having a diagnosis while he was alive really have made a difference when there is no cure? We will never know the answer to this. I am not convinced that the knowledge would have done much more than prolong Robin’s agony while he would surely become one of the most famous test subjects of new medicines and ongoing medical trials. Even if we experienced some level of comfort in knowing the name, and fleeting hope from temporary comfort with medications, the terrorist was still going to kill him. There is no cure and Robin’s steep and rapid decline was assured.

The massive proliferation of Lewy bodies throughout his brain had done so much damage to neurons and neurotransmitters that in effect, you could say he had chemical warfare in his brain.

One professional stated, “It was as if he had cancer throughout every organ of his body.” The key problem seemed to be that no one could correctly interpret Robin’s symptoms in time.

I was driven to learn everything I could about this disease that I finally had the name of. Some of what I learned surprised me.

One neuropathologist described LBD and PD as being at opposite ends of a disease spectrum. That spectrum is based on something they share in common: the presence of Lewy bodies—the unnatural clumping of the normal protein, α-synuclein, within brain neurons. I was also surprised to learn that a person is diagnosed with LBD vs PD depending on which symptoms present first.

After months and months, I was finally able to be specific about Robin’s disease. Clinically he had PD, but pathologically he had diffuse LBD. The predominant symptoms Robin had were not physical—the pathology more than backed that up. However you look at it—the presence of Lewy bodies took his life.

The journey Robin and I were on together has led me to knowing the American Academy of Neurology and other groups and doctors. It has led me to discover the American Brain Foundation, where I now serve on the Board of Directors.

This is where you come into the story.

Hopefully from this sharing of our experience you will be inspired to turn Robin’s suffering into something meaningful through your work and wisdom. It is my belief that when healing comes out of Robin’s experience, he will not have battled and died in vain. You are uniquely positioned to help with this.

I know you have accomplished much already in the areas of research and discovery toward cures in brain disease. And I am sure at times the progress has felt painfully slow. Do not give up. Trust that a cascade of cures and discovery is imminent in all areas of brain disease and you will be a part of making that happen.

If only Robin could have met you. He would have loved you—not just because he was a genius and enjoyed science and discovery, but because he would have found a lot of material within your work to use in entertaining his audiences, including the troops. In fact, the most repeat character role he played throughout his career was a doctor, albeit different forms of practice.

You and your work have ignited a spark within the region of my brain where curiosity and interest lie and within my heart where hope lives. I want to follow you. Not like a crazed fan, but like someone who knows you just might be the one who discovers the cure for LBD and other brain diseases.

Thank you for what you have done, and for what you are about to do.

DISCLOSURE

Susan Schneider Williams serves on the Board of Directors for the American Brain Foundation (americanbrainfoundation.org) but reports no disclosures relevant to the manuscript. Go to Neurology.org for full disclosures.

Footnotes

  • Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the author, if any, are provided at the end of the editorial.

Symptoms of Dementia with Lewy Bodies

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Dementia with Lewy bodies (DLB), also known as Lewy body dementia, is a common type of dementia estimated to affect more than 100,000 people in the UK.
“Dementia” is the name for problems with mental abilities caused by gradual changes and damage in the brain. 
It’s rare in people under 65.It tends to develop slowly and get gradually worse over several years.
This page covers:

Symptoms of dementia with Lewy bodies

People with dementia with Lewy bodies may have:

  • problems with understanding, thinking, memory and judgement – this is similar to Alzheimer’s disease, although memory may be less affected in people with dementia with Lewy bodies
  • periods of fluctuating alertness alternating with periods of confusion or sleepiness – this can change over hours or days
  • slow movement, stiff limbs and tremors (uncontrollable shaking)
  • hallucinations (usually seeing or sometimes hearing things that aren’t there)
  • disturbed sleep, often with violent movements and shouting out
  • fainting spells, unsteadiness and falls

These problems can make daily activities increasingly difficult and someone with the condition may eventually be unable to look after themselves.

Read more about the symptoms of dementia with Lewy bodies.

Getting medical advice

See your GP if you think you have early symptoms of dementia, especially if you’re over 65 years of age.

If you’re worried about someone else, encourage them to make an appointment with their GP and perhaps suggest that you go with them.

Your GP can do some simple checks to try to find the cause of your symptoms and they can refer you to a memory clinic or another specialist for further tests if needed.

Read more about getting a dementia diagnosis.

Tests for dementia with Lewy bodies

There’s no single test for dementia with Lewy bodies.

The following may be needed to make a diagnosis:

  • an assessment of symptoms – for example, whether there are typical symptoms of dementia with Lewy bodies
  • an assessment of mental abilities – this will usually involve a number of tasks and questions
  • blood tests to rule out conditions with similar symptoms
  • brain scans, such as an MRI scanCT scan or a single photon-emission computed tomography (SPECT) dopamine transporter scan – these can detect signs of dementia or other problems with the brain

Read more about the tests used to diagnose dementia.

Treatments for dementia with Lewy bodies

There’s currently no cure for dementia with Lewy bodies or any treatment that will slow it down.

But there are treatments that can help control some of the symptoms, possibly for several years.

Treatments include:

  • medicines to reduce hallucinations, confusion, drowsiness, movement problems and disturbed sleep
  • therapies such as physiotherapyoccupational therapy and speech and language therapy for problems with movement, everyday tasks, and communication
  • psychological therapies, such as cognitive stimulation (activities and exercises designed to improve memory, problem-solving skills and language ability)
  • dementia activities, such as memory cafés (drop-in sessions for people with memory problems and their carers to get support and advice)

Read more about how dementia with Lewy bodies is treated.

Outlook for dementia with Lewy bodies

How quickly dementia with Lewy bodies gets worse varies from person to person.

Home-based help will usually be needed, and some people will eventually need care in a nursing home.

The average survival time after diagnosis is similar to that of Alzheimer’s disease – around 6 to 12 years. But this is highly variable and some people live much longer than this.

If you or a loved one has been diagnosed with dementia, remember that you’re not alone. The NHS and social services, as well as voluntary organisations, can provide advice and support for you and your family.

Causes of dementia with Lewy bodies

Dementia with Lewy bodies is caused by clumps of protein forming inside brain cells. These abnormal deposits are called Lewy bodies.

These deposits are also found in people with Parkinson’s disease, and they build up in areas of the brain responsible for functions such as thinking, visual perception and muscle movement.

It’s not clear why the deposits develop and how exactly they damage the brain. It’s thought that part of the problem is the proteins affecting the brain’s normal functions by interfering with signals sent between brain cells.

Dementia with Lewy bodies usually occurs in people with no family history of the condition, although there have been very rare cases that seem to run in families.

NHS https://www.nhs.uk

More information

Living with dementia

Find dementia activities near you

Living well with dementia

Staying independent with dementia

Dementia activities

Looking after someone with dementia

Dementia and your relationships

Communicating with people with dementia

Coping with dementia behaviour changes

Care and support

Sources of help and support

Organising care at home

Dementia and care homes

Dementia, social services, and the NHS

Dementia and your money

Managing legal affairs for someone with dementia

End of life planning