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Discussing Diagnosis and Prognosis of LBD

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Informing the Patient and Care Partner

Your preparedness to receive a Lewy body disease diagnosis may vary significantly depending on the disease. While there is increasing awareness of disease with Lewy bodies (DLB) among healthcare practitioners, public awareness remains relatively low. Because of the multiple presenting features of DLB, loved ones may suspect the more widely known disorders such as  Alzheimer’s disease (AD) or Parkinson’s disease (PD), or a psychiatric disorder. The first time many people hear of Lewy body disease is when they or their loved one are diagnosed. Getting accurate information about the diagnosis and setting appropriate expectations with your doctor is essential to the quality of your care. After a Parkinson’s dementia (PD) diagnosis, the person with PD and their care partners are usually made aware of the potential of mild cognitive impairment or dementia to develop, so they may be more-well prepared to receive a diagnosis of Parkinson’s disease dementia.

While difficult news to receive, an LBD diagnosis can provide a certain degree of comfort as it helps the person with LBD and their loved ones make sense of what they have been experiencing. You may have discussions with the doctor about LBD and its anticipated impact over several office visits because there are many complex issues of clinical and caregiving matters involved.

Documenting an LBD diagnosis is important, because of the potential for severe medication sensitivities and because some healthcare providers who are not specialists have a relatively low awareness of LBD. One important role for care partners is to be the first line of defense against the administration of medications that may cause adverse reactions.

Prognosis

Like AD, the rate of progression of LBD can vary greatly. The typical lifespan after diagnosing LBD is about five to seven years.1,2  Anecdotal experience suggests that the trajectory of LBD progression may mirror the rate of early symptom onset and progression. As research advances, there is always the possibility that new options for treatment that may alter the progression of the disease.

Progression of LBD

There are no formally defined stages of LBD like there are in AD. Instead, expert insights may be useful to both the clinician and LBD family. Efforts are underway to define the mild cognitive impairment (MCI) stage of DLB to allow for an earlier diagnosis. Criteria have been developed for MCI in PD.

Early, suggestive indicators of LBD

  • Many times, you may only recognize initial symptoms when you think back on the early days, possibly extending back 1-3 years.
  • Occasional, minor, episodes of forgetfulness, sometimes described as lapses of concentration or ‘switching off’.
  • An initial brief period of delirium in association with genuine physical illness and/or surgical procedures, followed by recovery, followed by a subsequent mental and physical decline.

Time for diagnosis and treatment

  • Persistent cognitive impairment with marked fluctuations in severity.
  • Nighttime worsening and nightmares.
  • More elaborate episodes with confusion, visual and auditory hallucinations and secondary paranoid delusions.
  • Occasional to frequent falls, either due to balance instability or sometimes accompanied by episodes of disturbances of consciousness.
  • Extensive medical screening performed with negative results.

Advancing disease

  • Sudden increases in confusion, psychosis, and behavioral disturbance may be brought on by medication reactions or other medical conditions.
  • Severe neuroleptic (drugs that depress nerve function) sensitivity reactions may bring on the rapid development of rigidity, marked worsening in cognitive functioning, and heavy sedation.
  • In cases not receiving neuroleptics or tolerating low dosage of one, the typical natural history is a gradually progressive decline into severe dementia.
  • Physical and speech therapy may help maintain functional abilities for some time.
  • Increasing behavioral disturbances, including shouting, aggression on approach and evidence of persisting delirium.
  • Death is usually due to respiratory or cardiac disease, or injuries sustained in falls.

1. Williams, M. M., Xiong, C., Morris, J. C. & Galvin, J. E. Survival and mortality differences between dementia with Lewy bodies vs Alzheimer disease. Neurology 67, 1935–1941 (2006).
2. Jellinger, K. A., Wenning, G. K. & Seppi, K. Predictors of survival in dementia with Lewy bodies and Parkinson dementia. Neurodegener. Dis. 4, 428–430 (2007).

Symptoms

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LBD has variable presentations that include cognitive difficulties associated with motor dysfunction, perceptual disturbances, and/or sleep/wake cycle alterations.

Cognitive

Cognitive impairment in DLB is often misdiagnosed as AD. While memory may be relatively intact in early DLB, the cognitive profile of DLB includes:

  • Early and significant deficits in executive function, such as impaired planning, problem solving and judgment.
  • Visuospatial dysfunction, resulting in difficulty recognizing familiar people or objects, problems with depth perception, or impaired hand-eye coordination.
  • Reduced attention or ability to concentrate, which may mimic memory deficits.
  • Slowed thinking (bradyphrenia) and speech difficulties may also occur.
  • Fluctuating cognition is common and refers to changes in levels of attention, concentration and functional ability. Fluctuations may present as staring spells or confusion that lasts from minutes to hours. Transient episodes of unresponsiveness may also occur.

Mild cognitive impairment or unexplained delirium may be the earliest signs of impending LBD.

Motor

The onset timing of spontaneous parkinsonism in LBD varies and may be subtle at first. Signs and symptoms include:

  • Reduced facial expression (masked facies)
  • Soft voice (hypophonia)
  • Stiffness (rigidity)
  • Postural instability
  • Gait difficulty and falls
  • Slowness of movement (bradykinesia)
  • Tremor at rest

Psychiatric

Recurrent visual hallucinations occur in up to 80% of people with LBD, and their appearance early in the course of dementia strongly suggests LBD3. People with LBD frequently report seeing people, animals or insects and can often describe them in great detail. Delusions are also common and may relate to visual hallucinations. Apathy, anxiety and depressive symptoms and signs are also frequently seen in LBD patients. Unfortunately, a severe sensitivity to antipsychotics is also a common symptom of LBD.

Sleep

REM sleep behavior disorder (RBD) may present years or even decades before other signs of LBD. RBD results from the absence of sleep paralysis that normally occurs during REM sleep, leading people to physically move about in their dreams. Patients may experience vivid nightmares and can shout, thrash, punch or kick during their dreams, sometimes injuring themselves or their bed partners. Idiopathic RBD is highly associated with the development of Lewy body disorders, both DLB and PD, but not AD.
Other sleep disorders include excessive daytime sleepiness, restless leg syndrome, insomnia, obstructive sleep apnea and periodic limb movement. A formal sleep study and treatment is recommended to resolve significant disruptions of sleep.

Autonomic

Severe autonomic dysfunction may occur in LBD, including orthostatic hypotension (a form of low blood pressure that happens when standing after sitting or lying down), syncope (fainting), erectile dysfunction, urinary incontinence and constipation. Other signs of autonomic dysfunction include excessive saliva and drooling (sialorrhea), altered sweating and a chronic, scaly skin condition (seborrhea). An impaired sense of smell (hyposmia) is also common, occurring earlier in LBD than in AD.

About LBD

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The LBD Spectrum

Lewy body dementia (LBD) is a brain disease characterized by a spectrum of symptoms involving disturbances of movement, cognition, behavior, sleep and autonomic function. Two related clinical disorders make up the LBD spectrum: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD).
Individuals with DLB present with dementia as the early disabling symptom, plus other LBD symptoms, one of which may be parkinsonism. Others will present with motor symptoms resulting in a diagnosis of Parkinson’s disease (PD) and may also have some mild cognitive impairment initially or in the early stages of the disease; over time, usually several years or more, some will progress to dementia (PDD).
Did you know?  LBD affects an estimated 1.4 million Americans. LBD is often misdiagnosed as a psychiatric disorder or another form of dementia.

Dementia with Lewy Bodies

DLB is the second most common form of degenerative dementia in the elderly next to Alzheimer’s disease (AD). Recent estimates suggest that DLB represents 4 to 16% of cases of dementia seen in the clinic,1 but the true prevalence is probably higher.2 The most common features of DLB are progressive cognitive impairment leading eventually to full-blown dementia, parkinsonian motor symptoms (tremor, slowed mobility, stiffness of muscles, stooped posture, shuffling gait), visual hallucinations, and fluctuations in levels of alertness and cognitive acuity. Other symptoms include acting out dreams (REM sleep behavior disorder) and disturbances of autonomic function (low blood pressure, constipation and urinary frequency).3 Severe sensitivity or over-reaction to antipsychotic drugs (aka neuroleptics) are also common.
DLB is often misdiagnosed as AD, especially in those individuals who have few, if any signs of motor parkinsonism.4 Diagnosis is challenging because the order of symptom appearance, their relative severity and the combination of features present varies among individuals.5

Parkinson’s Disease Dementia

PD is a common movement disorder that affects 1 in 100 individuals over the age of 60 and 4-5% of adults over age 85 (up to 1 million Americans).5,6 Original descriptions of PD in the medical literature did not recognize cognitive problems as an important clinical feature. More recently, clinicians have come to realize that PDD occurs often and is among the most debilitating symptoms associated with disease progression. Each year an estimated 14% of PD patients over age 65 will develop at least mild dementia. In one study, almost 80% of PD patients developed dementia over an 8-year period.7,8

Cause and Pathology

The cause of LBD is unknown. Brain pathological changes in LBD involve selective damage and loss of nerve cells in certain regions of the brain (example: substantia nigra in the brainstem). Affected, but less damaged cells contain Lewy bodies, which are a microscopic aggregation of a specific protein (α-synuclein). The Lewy body is the pathological signature of LBD that overwhelms the cell’s normal biological functions and causes it to die.9 There are many possible causes of LBD but researchers are just beginning to understand the reasons why some people are more susceptible to developing LBD. One important reason that has recently come to light is the discovery of an increasing number of genetic variants that increase the likelihood that a person will develop LBD.
DLB and PDD are clinically similar, except for the timing of onset of cognitive impairment, but the pathology of the two is almost identical. This is both a surprise and a mystery, since there is no good explanation for the variability of the motor-cognitive interval among people with LBD. In other words, why do some people develop serious cognitive impairment at the earliest stage of a Lewy body disorder, whereas others remain cognitively normal for many years before impairment develops or never develop dementia?
Another puzzling fact is the frequent coexistence of the pathology of AD (amyloid plaques and neurofibrillary tangles) in DLB compared with PDD. AD differs from LBD clinically because of its distinctive cognitive profile (mostly a disorder of memory without the other features typical of LBD) and its lack of parkinsonian features except in late stages. The clinical overlap between AD and DLB in the absence of a specific diagnostic test leads to misdiagnosis in a significant minority of patients. Currently, the only way to definitively diagnose LBD is with an autopsy. These facts underscore the current concept of a neurodegenerative continuum with boundaries that are frequently blurred. It is only through research that these and other fundamental questions will be answered.

Risk Factors

Older age is the greatest risk factor for LBD, with most diagnoses being made in individuals over the age of 50. There is some evidence that the age of onset of the symptoms of DLB is younger than in PDD and the rate of progression/duration of disease is slightly faster in DLB.10
 Rapid eye movement (REM) sleep behavior disorder (RBD), a condition characterized by dream enactment, is a common risk factor for DLB, PD and other synucleinopathies, often occurring many years before the onset of parkinsonism or cognitive impairment.11 Pre-Parkinson’s RBD is thought to increase the risk of cognitive impairment when the motor phase of PD evolves, compared with PD that has no RBD prodrome.
Parkinson’s disease is a risk factor for developing dementia, since the majority of those with PD will eventually suffer from cognitive impairment

Genetics

Mutations in over a dozen genes have been shown to “cause” PD.12,13 Individuals with such rare genetic variants have a very high risk of developing PD during their lifetime, and many of them will later develop dementia. Mutations in one of these genes (SNCA) can occasionally result in a clinical picture that resembles DLB.14 However, no more than 2% of patients with PD, and likely even fewer with DLB, carry a disease-causing mutation in a known gene. In most instances PD and DLB are thought to arise through a complex interaction between common genetic and environmental factors, each one with a small-to-modest effect. Two important common genetic risk factors that have recently come to light are variants in the APOE and GBA genes. The APOE ε4 allele has long been known to increase the risk of developing AD, but there is now strong evidence that it does the same for DLB.15,16 Furthermore, patients with PD who carry APOE ε4 have (on average) more severe cognitive problems.17 A number of variants in the GBA gene have been shown to increase risk for both PD and DLB.18–20 In addition, patients with PD who have one of these GBA variants have a more rapid cognitive decline and are more likely to develop dementia.21,22
Since mutations that cause LBD are rare, and no treatments have been discovered to reverse the effects of known genetic risk factors, genetic testing is not currently recommended for routine screening.
However, if a family has multiple individuals with PD (with or without dementia) and/or DLB, it is reasonable to consider genetic testing for some or all of the known genes. The rationale for considering such testing would be to (1) confirm a diagnosis and (2) provide genetic counseling for family members, if the results are positive. These decisions need to be made carefully with family members and the individual’s healthcare provider. It is prudent to undergo pre- and post-testing counseling so that the individual fully understands the risks and benefits of learning about their genetic status. In addition, certain research centers at academic institutions and the National Institutes of Health are investigating genetic risk and are actively seeking people who would like to volunteer as research subjects.

Research

In 2013, the National Institutes of Health organized a summit that resulted in the first national research strategy for LBD. Updated in 2016,23 research priorities for LBD include:

  • Developing new drugs for clinical trials.
  • Establishing longitudinal studies culminating in autopsy studies to improve diagnosis of DLB.
  • Determining which individuals with PD have a high risk of progressing to dementia.
  • Developing a better understanding of the disease mechanisms through brain mapping and genetics.
  • Identifying validated biological and imaging biomarkers to detect disease presence, measure progression and advance the development of safe and effective symptomatic and disease modifying therapies.

1. Vann Jones, S. A. & O’Brien, J. T. The prevalence and incidence of dementia with Lewy bodies: a systematic review of population and clinical studies. Psychol. Med. 44, 673–683 (2014).
2. Nelson, P. et al. Low sensitivity in clinical diagnosis of dementia with Lewy bodies. J Neurol 257, 359–66 (2010).
3. McKeith, I. G. et al. Diagnosis and management of dementia with Lewy bodies: Fourth consensus report of the DLB Consortium. Neurology 89, 88–100 (2017).
4. Barker, W. W. et al. Relative frequencies of Alzheimer disease, Lewy body, vascular and frontotemporal dementia, and hippocampal sclerosis in the State of Florida Brain Bank. Alzheimer Dis. Assoc. Disord. 16, 203–12 (2002).
5. Pringsheim, T., Jette, N., Frolkis, A. & Steeves, T. D. L. The prevalence of Parkinson’s disease: a systematic review and meta-analysis. Mov. Disord. Off. J. Mov. Disord. Soc. 29, 1583–1590 (2014).
6. de Lau, L. M. L. & Breteler, M. M. B. Epidemiology of Parkinson’s disease. Lancet Neurol. 5, 525–535 (2006).
7. Aarsland, D., Andersen, K., Larsen, J. P., Lolk, A. & Kragh-Sørensen, P. Prevalence and characteristics of dementia in Parkinson disease: an 8-year prospective study. Arch. Neurol. 60, 387–392 (2003).
8. Hely, M. A., Reid, W. G. J., Adena, M. A., Halliday, G. M. & Morris, J. G. L. The Sydney multicenter study of Parkinson’s disease: the inevitability of dementia at 20 years. Mov. Disord. Off. J. Mov. Disord. Soc. 23, 837–44 (2008).
9. Osterberg, V. R. et al. Progressive aggregation of alpha-synuclein and selective degeneration of Lewy inclusion-bearing neurons in a mouse model of parkinsonism. Cell Rep.
10, 1252–1260 (2015). 10. Savica, R. et al. Incidence of dementia with Lewy bodies and Parkinson’s disease dementia. JAMA Neurol. 70, 1396–1402 (2013).
11. Boeve, B. F. et al. Pathophysiology of REM sleep behaviour disorder and relevance to neurodegenerative disease. Brain J. Neurol. 130, 2770–2788 (2007).
12. Kim, C. Y. & Alcalay, R. N. Genetic forms of Parkinson’s disease. Semin. Neurol. 37, 135–146 (2017).
13. Hernandez, D. G., Reed, X. & Singleton, A. B. Genetics in Parkinson disease: Mendelian versus nonMendelian inheritance. J. Neurochem. 139 Suppl 1, 59–74 (2016).
14. Zarranz, J. J. et al. The new mutation, E46K, of alpha-synuclein causes Parkinson and Lewy body dementia. Ann. Neurol. 55, 164–173 (2004).
15. Tsuang, D. et al. APOE ε4 increases risk for dementia in pure synucleinopathies. JAMA Neurol. 70, 223–228 (2013).
16. Bras, J. et al. Genetic analysis implicates APOE, SNCA and suggests lysosomal dysfunction in the etiology of dementia with Lewy bodies. Hum. Mol. Genet. 23, 6139–6146 (2014).
17. Mata, I. F. et al. APOE, MAPT, and SNCA genes and cognitive performance in Parkinson disease. JAMA Neurol. 71, 1405–1412 (2014).
18. Sidransky, E. et al. Multicenter analysis of glucocerebrosidase mutations in Parkinson’s disease. N. Engl. J. Med. 361, 1651–1661 (2009).
19. Tsuang, D. et al. GBA mutations increase risk for Lewy body disease with and without Alzheimer disease pathology. Neurology 79, 1944–1950 (2012).
20. Nalls, M. A. et al. A multicenter study of glucocerebrosidase mutations in dementia with Lewy bodies. JAMA Neurol. 70, 727–735 (2013).
21. Davis, M. Y. et al. Association of GBA mutations and the E326K polymorphism with motor and cognitive progression in Parkinson disease. JAMA Neurol. 73, 1217–1224 (2016).
22. Liu, G. et al. Specifically neuropathic Gaucher’s mutations accelerate cognitive decline in Parkinson’s. Ann. Neurol. 80, 674–685 (2016).
23. ADRD Summit 2016 Report to the National Advisory Neurological Disorders and Stroke Council. (2016).

LBD Story: Facing Tough Choices at the End of Life

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By Angela Taylor, Director of Programs

When a loved one is nearing the end of life from a disease like Lewy body dementia, emotions run strong, and confusion can overtake the decision process. I want to share my own personal experience as an LBD caregiver in the hopes it will help others.

We engaged hospice services for my father before he was in the dying process. And I’m so glad we did. He had taken to keeping his eyes closed much of the time he was awake. And slowly he lost the strength to bear any weight on his legs. In came hospice staff and all of their wonderful resources.

I was surprised when he became more alert and responsive under their care. Looking back, now I realize it makes perfect sense. They used a proactive strategy to manage the normal aches and pains of getting older and being less active. He had clearly been living with pain but was unable to express it. How long had that being going on? After a month or two, they suggested further improvement might negate the need for hospice care.

But then influenza swept through the memory care residence. Despite aggressive cleaning efforts by the staff, the flu spread. It wasn’t long before Dad developed a high fever and couldn’t be awakened.

When he was diagnosed with LBD 8 years earlier, I became his “right hand” in all matters. Together we waded through medical, financial and family affairs. He asked me to go with him to see an elder law attorney to review his legal affairs. He updated some of his legal documents, but decided against creating an advanced directive, a binding document that identifies ones wishes for medical care if they are dying but unable to speak for themselves. At the time I was still adjusting to the reversal of our father/daughter roles to press him on it further. As his cognitive abilities declined, I more confidently took over as power-of-attorney and made all decisions in his best interest.

But now he was unresponsive. One day passed, then another, and yet a third, and still he was no better. I started questioning the hospice staff more aggressively. Shouldn’t we hydrate him? Does he need tube feeding? How could he possibly recover from the flu if we allow him to become weakened? I realized then how much I should have pressed Dad on end-of-life decisions when he was in the early stages of LBD. I was going to have to make this call on my own. I had arrived at the crossroads of sudden grief for me or extended life for him.

The Importance of Sensitive Discussions

The thought of discussing end-of-life decisions can be painful for everyone, especially if a person is in the early stage of a terminal illness. That is completely normal, as it requires envisioning the future in which a loved one dies. But with any terminal illness, including neurodegenerative diseases like LBD, it’s important to have those sensitive discussions early. This enables the person experiencing mild dementia to express their care preferences while they still can articulate their thoughts and feelings clearly.

End-of-life issues include determining what medical interventions are desired, or should be avoided, when a person is dying. Such interventions include emergency care or hospitalization, CPR (cardiopulmonary resuscitation), ventilator use, artificial nutrition (tube feeding), artificial hydration (intravenous fluids) and comfort care.

So many of these decisions are intensely personal ones and require asking difficult questions. What are the care priorities are of the ill person? Do they want to extend their functional ability, maximize their quality of life, or lengthen life? Comfort care, which is care that alleviates pain and distress, can be started in any stage of dementia, but is an important part of caring for the person with end-stage dementia. It improves quality of life through reduction of distress.

Tube Feeding or No Tube Feeding? That is the Question.

The biggest question I wrestled with when my father was at the end of his life was nutrition. He had already gone 3 days without food or drink. I thought perhaps if we used tube feeding or intravenous fluids it might strengthen his ability to recover. But the flip side of the coin kept staring me in the face. What was I saving him for?

People in the advanced stage of LBD are in a progressive state of physical decline. Certainly that was the case with Dad. Even if he recovered from the flu, he’d never recover from advanced LBD. Like others with LBD, muscle weakness may affect his swallowing ability. This can lead to aspirating food or liquid, resulting in pneumonia, a common cause of death in advanced dementia. Even without problems with aspiration, he’d probably succumb to pneumonia or heart failure after months of being bedridden. After conferring with those closest to him, I decided to leave my father’s fate in nature’s hands; either his fever would break, or he would begin the dying process.

The Evidence is Clear

I later learned what experts recommend about tube feeding and advanced dementia care. There is no evidence that supports the use of feeding tubes in advanced dementia and experts recommend that it not even be offered as a treatment option. Instead, the recommendation by the American Geriatrics Society is to provide food or liquid by hand-feeding, only to the extent that it is enjoyed by the person receiving care. There is no evidence of longer survival, less pneumonia, improved wound healing, weight gain or improved quality of life with the use of feeding tubes.

So how did nature take its course? After a week of being unresponsive from the fever, out of the blue my father opened his eyes, stared straight into mine, took a few more breaths and left this world. It’s been almost four years now. And I am still at peace with my decision.

For more information on comfort care at end of life, read “End of Life: Helping With Comfort and Care” published by the National Institute on Aging.

LBDA and FTD Say “It’s Better With Flowers”

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Flowers LogoLBDA has teamed up with FTD to offer you the opportunity to purchase fresh flowers to celebrate any occasion. FTD is well known for providing the highest quality flower arrangements and floral bouquets—perfect for birthdays, anniversaries, or any holiday throughout the year.

Don’t miss an important occasion! FTD has around-the-clock service, and flower delivery is fast, easy, and conveniently hand-delivered by a professional FTD florists. Other products are also available.

Visit the LBDA/FTD Web site for more information and to make your purchases. You will receive the LBDA discount on standard orders, and a portion of the proceeds will donated to LBDA. So, take time to brighten someone’s day or spruce up your event with flowers while contributing to a worthy cause.

News You Can Use: Fall Prevention Tips

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Whether diagnosing dementia with Lewy bodies (DLB) or Parkinson’s disease with dementia (PDD), increased risk of falling is a common problem in both subtypes of Lewy body dementia (LBD). Clinicians often ask if their patient has experienced any recent falls. One of the core symptoms of DLB, parkinsonism, can make a person move more slowly and stiffly, and have a stooped posture. Falls can be associated with other LBD symptoms as well. Loss of attention can slow reaction time and increase the chance that obstacles in the path aren’t noticed. Visual-spatial problems may impair a person’s depth perception. Even dizziness or fainting can occur due to a drop in blood pressure when standing. All of these put the person with LBD at an increased risk of falls and injury.

Here are some simple home safety improvements that may reduce the risk of falls.

  • Put frequently used items in easily-accessible places
  • Arrange furniture to ensure a clear path of travel
  • Keep floors clean and clear of debris
  • Clean up spills immediately
  • Remove throw rugs and runners. Make sure other rugs are secured to the floor and have smooth surfaces
  • Move any power cords out of the flow of traffic
  • Remove chairs that swivel
  • Stairs should have at least one handrail; two are better
  • Ensure halls, stairways and entrances are well lit
  • Use night lights in the bedroom, bathroom and hallway
  • Add a tub rail, grab bars, bath seat and a rubber mat or non-skid decals for the bathtub
  • Use only nonskid bathmats
  • Install an elevated toilet seat and/or add grab bars for support
  • Wear non-skid shoes; assess the gripping nature of rubber-soled shoes, which may be a tripping hazard because they sometimes ‘catch’ on the floor
  • Consider assisted devices when walking alone becomes unsafe, like a cane, walker or wheelchair

Another important factor that supports fall prevention in LBD is maintaining physical health. Exercise can help build muscle and cardiovascular strength, flexibility and improve balance. Always consult a doctor before starting any exercise program, and inquire whether physical and occupational therapy may be helpful in your situation. Consider mixing exercise with social activity to make it more fun, such as walking, biking, or swimming with a friend, dancing, or attending a tai-chi class. This will increase the likelihood of exercising on a regular basis.

Lewy Body Dementia: Information for Patients, Families, and Professionals

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Lewy Body Dementia: Information for Patients, Familes, and ProfessionalsLewy body dementia (LBD) is a complex, challenging, and surprisingly common brain disease. Although lesser known than its “cousins” Alzheimer’s disease and Parkinson’s disease, LBD is not a rare disorder. More than 1 million Americans are affected by its disabling changes in the ability to think and move. This 40-page booklet helps people with LBD, their families, and professionals learn more about the disease and resources for coping.

This booklet on LBD was a collaboration between the Lewy Body Dementia Association, the Shiley-Marcos Alzheimer’s Disease Research Center at the University of California, San Diego, the National Institute on Aging and National Institute of Neurological Disorders and Stroke.

Print copies of this publication can be ordered online from the National Institute on Aging’s Alzheimer’s Disease Education and Referral Center or by calling toll-free 1-800-438-4380. 
To download a .pdf of this publication, click here.

Honor & Memorial Gifts

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We are always honored to accept donations made in honor or in memory of a loved one. Honor/memorial gifts can be made securely online or mailed to:

Lewy Body Dementia Association
912 Killian Hill Road, S.W.
Lilburn, GA 30047

Oftentimes, families who have recently lost a loved one to LBD contact us with questions about how they can invite friends and family to make memorial donations to LBDA, in lieu of flowers. Below are answers to frequently asked questions regarding memorial gifts:

By informing us of your family’s wishes to direct memorial gifts to LBDA, you help to ensure that we are able to notify you of all donations we receive in your loved one’s memory. Please contact us at:

404-935-6444
lbda@lbda.org

and provide us with your name, mailing address, and telephone number, as well as the name of your loved one.

You will be notified by mail and provided with the names and addresses of those individuals or families who have made donations in memory of your loved one. Typically, letters are mailed from the LBDA office on a weekly basis.

LBDA also sends an acknowledgement letter to each of the individuals or families who make a memorial donation.

Submit An LBD Story

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LBDA invites you to submit a personal LBD story for possible inclusion in our website, newsletter or other publications.

Stories can be up to 1,000 words in length. Submissions must include full contact information of the author, including name, address, phone number and email if available. Please also let us know if you would like to be acknowledged publicly as the author of your story, or if you wish for it to be published anonymously.

By submitting a story, the author gives LBDA the permission to use their story in print or online, and to be reproduced in part, completely, or summarized by LBDA at our discretion. (Unfortunately, we cannot guarantee that all stories submitted will be published.) Depending on the story and the author’s permission to be publicly acknowledged, LBDA may publish the story using real names and locations or may remove the names and locations or may remove the names and locations in order to protect the idenitiy of anyone in the story.

Personal stories can be submitted to LBDA by filling out the form below. Stories can also be submitted by email at lbda@lbda.org (please notate LBD Story in the subject line) or by mail:

LBDA
912 Killian Hill Road SW
Lilburn, GA 30047

Thank you for sharing your story with LBDA!

 

10 Things You Should Know about LBD

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Lewy body dementias (LBD) affect an estimated 1.4 million individuals in the United States. At the Lewy Body Dementia Association, we understand that though many families are affected by this disease, few individuals and medical professionals are aware of the symptoms, diagnostic criteria, or even that LBD exists. There are important facts about Lewy body dementias that you should know if you, a loved one, or a patient you are treating may have LBD.

  1. Lewy body dementias (LBD) are the second most common form of degenerative dementia. The only other form of degenerative dementia that is more common than LBD is Alzheimer’s disease (AD). LBD is an umbrella term for dementia associated with the presence of Lewy bodies (abnormal deposits of a protein called alpha-synuclein) in the brain.
  2. LBD can have three common presentations. Regardless of the initial symptom, over time all three presentations of LBD will develop very similar cognitive, physical, sleep and behavioral features.
    • Some individuals will start out with a movement disorder leading to the diagnosis of Parkinson’s disease and later develop dementia. This is diagnosed as Parkinson’s disease dementia.
    • Another group of individuals will start out with a cognitive/memory disorder that may be mistaken for AD, but over time two or more distinctive features become apparent, leading to the diagnosis of ‘dementia with Lewy bodies’ (DLB).
    • Lastly, a small group will first present with neuropsychiatric symptoms, which can include hallucinations, behavioral problems, and difficulty with complex mental activities, also leading to an initial diagnosis of DLB.
  3. The most common symptoms of LBD include:
    • Impaired thinking, such as loss of executive function (planning, processing information), memory, or the ability to understand visual information
    • Fluctuations in cognition, attention, or alertness
    • Problems with movement, including tremors, stiffness, slowness, and difficulty walking
    • Visual hallucinations (seeing things that are not present)
    • Sleep disorders, such as acting out one’s dreams while asleep
    • Behavioral and mood symptoms, including depression, apathy, anxiety, agitation, delusions, or paranoia
    • Changes in autonomic body functions, such as blood pressure control, temperature regulation, and bladder and bowel function
  4. The symptoms of LBD are treatable. All medications prescribed for LBD are approved for a course of treatment for symptoms related to other diseases such as Alzheimer’s disease and Parkinson’s disease with dementia, and offer symptomatic benefits for cognitive, movement, and behavioral problems.
  5. Early and accurate diagnosis of LBD is essential. Early and accurate diagnosis is important because LBD patients may react to certain medications differently than AD or PD patients. A variety of drugs, including anticholinergics and some antiparkinsonian medications, can worsen LBD symptoms.
  6. Traditional antipsychotic medications may be contraindicated for individuals living with LBD. Many traditional antipsychotic medications (for example, haloperidol, thioridazine) are sometimes prescribed for individuals with Alzheimer’s disease and other forms of dementia to control behavioral symptoms. However, LBD affects an individual’s brain differently than other dementias. As a result, these medications can cause a severe worsening of movement and a potentially fatal condition known as neuroleptic malignant syndrome (NMS). NMS causes severe fever, muscle rigidity, and breakdown that can lead to kidney failure.
  7. Early recognition, diagnosis and treatment of LBD can improve the patients’ quality of life. LBD may affect an individual’s cognitive abilities, motor functions, and/or ability to complete activities of daily living. Treatment should always be monitored by a physician and may include prescriptive and other therapies, exercise, diet, sleep habits, changes in behavior, and daily routines.
  8. Individuals and families living with LBD should not have to face this disease alone. LBD affects every aspect of a person – their mood, the way they think, and the way they move. People with LBD and their families will need considerable resources and assistance from healthcare professionals and agencies. The combination of cognitive, motor and behavioral symptoms creates a highly challenging set of demands for continuing care. LBDA was formed to help families address many of these challenges.
  9. Physician education is urgently needed. An increasing number of general practitioners, neurologists, and other medical professionals are beginning to learn to recognize and differentiate the symptoms of LBD – the most misdiagnosed dementia – from other diseases. However, more education on the diagnosis and treatment of LBD is essential.
  10. More research is urgently needed. Research needs include tools for early diagnoses, such as screening questionnaires, biomarkers, neuroimaging techniques, and more effective therapies. With further research, LBD may ultimately be treated and prevented through early detection and neuroprotective interventions. Currently, there is no specific test to diagnose LBD. If you would like to support LBDA’s work helping to further research, please Donate Today.

LBDA Lewy Line

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Those living with Lewy body dementia, care partners, and others can connect to the licensed professionals with LBDA Support Services through the LBDA Lewy Line or email.

Support Services (and its national network of volunteers) can:

  • Listen compassionately and confidentially to challenges and share their own personal experience with LBD, as appropriate
  • Offering emotional support
  • Refer families to additional LBDA programs and services, as appropriate for their needs – such as support groups and Lewy Buddies (Lewy Buddies are lived-experience volunteers who share their time and experience with families)
  • Help identify information and community resources concerning the diagnosis and care of a person with LBD

We are unable to provide direct referrals for residential facilities or home care agencies. LBDA does not promote any doctor, medical center, other healthcare provider, medication, product or treatment. LBDA has made no independent examination of any professional’s qualifications, education, experience or other credentials of those with whom we have linked, the validity or suitability of the services or products they offer, or of the accuracy of the content of linked sites.

If you are seeking information on care options in your local area, please call Eldercare Locator at 1-800-677-1116 or visit their website by clicking here.

LBDA Lewy Line – 800-539-9767

Please leave a message and we will return your call as soon as possible.

Please note that we are unable to return calls outside of the United States.

E–mail LBDA Support Services – support@lbda.org

For other questions and concerns, please see our Contact Us page.

 

Is It LBD or Something Else?

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Sometimes early dementia symptoms can be vague, making the type of dementia hard to identify. It may take several years for enough symptoms to develop to point to a specific type of dementia. By learning about common forms of dementia, you can help your physician most quickly identify what type of dementia has developed.

  • Some types of dementia are reversible. They may be caused by an interaction of certain medications, a vitamin deficiency or a curable illness. If you are experiencing changes in your memory or cognitive abilities, please consult with a doctor to identify the cause and begin treatment immediately.
  • For many types of dementia, there are no known cures. These types of dementia mainly affect older adults, though some people are diagnosed with ‘early-onset dementia’ as young as their forties.

Getting an early and accurate diagnosis along with appropriate treatment is very important since people with LBD often respond very differently to certain medications.

Common Forms of Dementia

Alzheimer’s disease symptoms include a progressive loss of recent memory, problems with language, calculation, abstract thinking, and judgment, depression or anxiety, personality and behavioral changes, and disorientation to time and place. LBD is frequently misdiagnosed as Alzheimer’s disease, especially in the early stage. Over time, changes in movement, hallucinations, or RBD can help distinguish LBD from Alzheimer’s disease.

Lewy body dementia (LBD) is an umbrella term for a form of dementia that has three common presentations.

  • Some individuals will start out with a change in thinking that may resemble Alzheimer’s disease, but over time two or more distinctive features become apparent, leading to the diagnosis of ‘dementia with Lewy bodies’ (DLB). Symptoms that differentiate LBD from Alzheimer’s include unpredictable levels of cognitive ability, attention, or alertness, changes in walking or movement, visual hallucinations, a sleep disorder called REM sleep behavior disorder, in which people physically act out their dreams, and severe sensitivity to medications for hallucinations. In some cases, the sleep disorder can precede dementia and other symptoms of LBD by decades.
  • Others will start out with a movement disorder leading to the diagnosis of Parkinson’s disease and later develop dementia and other symptoms common in DLB.
  • A small group will first present with neuropsychiatric symptoms which can include hallucinations, behavioral problems, and difficulty with complex mental activities, leading to an initial diagnosis of DLB.

Regardless of the initial symptom, over time all three presentations of LBD will develop very similar cognitive, physical, sleep, and behavioral features, all caused by the presence of Lewy bodies throughout the brain.

Vascular dementia is caused by a series of small strokes that deprive the brain of vital oxygen. Symptoms – such as disorientation in familiar locations, walking with rapid, shuffling steps, incontinence, laughing or crying inappropriately, difficulty following instructions, and problems handling money (these symptoms may appear suddenly and worsen with additional strokes). High blood pressure, cigarette smoking, and high cholesterol are some of the risk factors for stroke that may be controlled to prevent vascular dementia.

Frontotemporal dementia (FTD) includes several disorders with a variety of symptoms. The most common signs of FTD include changes in personality and behavior, such as inappropriate or compulsive behavior, euphoria, apathy, the decline in personal hygiene, and a lack of awareness concerning these changes. Some forms of FTD involve language and speech symptoms or movement changes.

What Is Lewy Body Dementia?

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Lewy body dementia (LBD) is the 2nd most common type of progressive dementia after Alzheimer’s disease.

LBD is not a rare disease. It affects more than a million people in the United States alone. Because LBD symptoms may closely resemble other, more commonly known disorders like Alzheimer’s disease, it is widely under-diagnosed.

LBD is an umbrella term for two related diagnoses:

  • A person with dementia with Lewy bodies will develop dementia and other LBD symptoms, one of which may be changes in movement, like a tremor (parkinsonism).
  • With the other form of LBD, people will present first with changes in movement, leading to a Parkinson’s disease diagnosis; over time many will develop dementia years later. This is diagnosed as Parkinson’s disease dementia.

As time passes, people with both diagnoses will develop very similar cognitive, physical, sleep, and behavioral symptoms. The earliest symptoms of dementia with Lewy bodies and Parkinson’s disease dementia are different, but both are due to the same underlying biological changes in the brain.

Is it LBD or something else?

LBD is a multi-system disease and usually requires a comprehensive treatment approach with a collaborative team of physicians and other health care professionals like occupational, physical or speech therapists. Early diagnosis and treatment may extend your quality of life and independence. Many people with LBD enjoy significant lifestyle improvement with a comprehensive treatment approach, and some may even experience little change from year to year.