Tag: Medical Professionals

LBD Diagnostic Symptoms Checklist

Because Lewy body dementia is the most misdiagnosed form of dementia, LBDA developed a useful checklist to help physicians and their patients identify key LBD symptoms used to make a diagnosis.

This publication features a patient-friendly symptom checklist on the first page and the physician-oriented diagnostic criteria on the second.

This resource can be completed in advance by those who may have symptoms of LBD and provided to their doctors at their next office visit. It can also be handed out by healthcare professionals for their patients to complete at an office visit.

This free patient checklist can be downloaded and printed for unlimited use by both medical practices and individuals who want to discuss LBD with their doctor.

Download the LBD Diagnostic Symptoms Checklist

Resources for Healthcare Professionals

LBDA Publications for Healthcare Professionals

NEW :  Diagnosing and Managing Lewy Body Dementia  – An expansive look at clinical managment strategies for LBD, covering the Lewy body spectrum, symptoms, treatments, what medications to avoid, guidance for discussing the diagnosis, prognosis and progression, and the impact of LBD on the family caregiver.

Professional Brief: New DLB Diagnostic Criteria – This at-a-glance resource provides an update to healthcare professionals on the new 2017 diagnostic criteria for dementia with Lewy bodies (DLB).

Diagnostic Symptoms ChecklistA simple tool to help patients, caregivers and healthcare providers quickly and easily identify symptoms that are required for diagnosis of dementia with Lewy bodies (DLB).

Comprehensive Symptoms Checklist – A useful checklist to help people diagnosed with LBD or their caregivers report new or concerning LBD symptoms to their physician.

Caregiver Burden White Paper – This white paper examines the experience of hundreds of LBD caregivers seeking medical care for LBD and the psychosocial impact of being an LBD caregiver.

Understanding Behavioral Challenges in Dementia – Anticipating behavioral changes in dementia and understanding the causes helps caregivers deal with them more effectively.  This is a must-read for family caregivers. 

Emergency Room Treatment of Psychosis – Guidance from LBD experts on the treatment of psychosis in the E.R., including key considerations to take BEFORE treating behavioral disturbances in LBD.

Caregiver Impact

The combination of cognitive, motor and behavioral symptoms imposes significant challenges and stressors on caregivers. Education of and support for the primary caregiver is essential, and building a care team, when possible, can lessen the burden on any one individual.

Caregiver Burden

Early symptoms that are characteristic of LBD are associated with higher levels of caregiver burden, above and beyond impact of stress associated with early dementia in general.1 Key factors in LBD caregiver burden include behavioral problems (e.g., psychosis, apathy and agitation), an impaired ability to perform activities of daily living (due to both cognitive impairment and parkinsonism), the caregiver’s sense of isolation, and challenges with the diagnostic and treatment experience.
Research suggests that people with LBD may be more functionally impaired than individuals with AD with the same level of global cognitive impairment.2 Loss of independence in ability to perform instrumental activities of daily living typically occurs early in LBD, including the inability to manage one’s own medications and finances. Driving may also need to be curtailed early due to changes associated with LBD, i.e. variable levels of attention and alertness, visual hallucinations, slowed reaction time, and decreased spatial awareness.
LBD caregivers need to increasingly supervise and monitor LBD patients as particular symptoms manifest themselves or worsen, including executive impairment (i.e., difficulty planning and completing tasks), fluctuations in alertness, incontinence, intrusive hallucinations, and falls.

Diagnostic Delays

DLB caregivers often encounter significant barriers in obtaining an accurate diagnosis for their loved ones. Most see multiple physicians over more than a year before their relative is diagnosed with DLB, and more than three-quarters of persons with DLB are given a different diagnosis initially.3

Community-Based Services for Patients and Caregivers

The range and intensity of care required for LBD patients means that greater attention to and allocation of resources to assist LBD families are needed. One study compared resource use, cost of care, and determinants of cost of care in patients with DLB and AD. DLB patients utilized more than twice the amount of resources compared with AD patients. Specifically, DLB patients used greater resources in accommodations (long-term residential care), and required more outpatient care, informal care (measured by caregivers’ lost production and lost leisure time), community services and pharmacological therapy.4
Among neuropsychiatric features, apathy (i.e., loss of motivation to participate in routine activities) was found to be higher in DLB patients than AD patients. In addition, the cost of care for DLB patients with apathy was almost three times as high compared with AD patients with apathy. Thus, apathy is an important behavioral feature in LBD.

Low Public Awareness

The lack of LBD awareness in the general public increases the subjective burden of LBD on families, which echoes the experience of dementia caregivers in the days before extensive public education had been provided regarding AD.1

Performance Worry of Caregivers

Also problematic for LBD caregivers are concerns about their own capabilities as caregivers, which is amplified due to fewer informational resources on LBD caregiving compared with those available for AD, LBD caregivers’ sense of social isolation, and the challenges in finding supportive medical professionals or community services. Thus, LBD caregivers may be more concerned than other dementia caregivers about the quality of care they are providing.1

Monitoring for Depression and Burnout in Caregivers

Family caregivers often experience sleep deprivation, have poor eating habits, and fail to exercise enough. When it comes to their own medical care, their caregiving responsibilities may prevent them from convalescing when ill, and they often postpone or neglect to make medical appointments for themselves. The caregiver should also be considered a patient in some respects, as the stress of being in an intense, long-term caregiver role can lead to depression, poor health and burnout, which can increase the likelihood of institutionalization of the LBD patient. Healthcare providers should urge caregivers to prioritize their own health as highly as they do that of their loved one with LBD.
1. Legget, A., Zarit, S., Taylor, A. & Galvin, J. Stress and burden among caregivers of patients with Lewy body dementia. The Gerontologist 51, 76–85 (2011).
2. McKeith, I. G. et al. More severe functional impairment in dementia with Lewy bodies than Alzheimer disease is related to extrapyramidal motor dysfunction. Am. J. Geriatr. Psychiatry Off. J. Am. Assoc. Geriatr. Psychiatry 14, 582–588 (2006).
3. Galvin, J. E. et al. Lewy body dementia: the caregiver experience of clinical care. Parkinsonism Relat. Disord. 16, 388–92 (2010).
4. Boström, F., Jönsson, L., Minthon, L. & Londos, E. Patients with Lewy body dementia use more resources than those with Alzheimer’s disease. Int. J. Geriatr. Psychiatry 22, 713–719 (2007).

Referrals

Specialists

A team approach will result in the best outcomes for patients and their families. Referral to an informed neurologist is recommended for diagnosis and management of LBD symptoms; neuropsychologists may also be helpful in making a differential diagnosis. Geriatric psychiatrists may be needed to manage refractory behavioral problems.

LBDA

People with LBD and family caregivers need to be educated about the symptoms of LBD, standard treatment options, and how to find supportive services that may be needed over the disease course. A referral to the Lewy Body Dementia Association is recommended upon diagnosis for educational and support resources.

Legal counsel

Early in the course of dementia, physicians can help the patient identify and share their personal goals of care and discuss advanced care planning. Health care providers should also encourage families to consult an attorney to ensure their legal affairs are in order, such as a will, durable power of attorney and advanced directives.

Other referrals

A brief assessment may reveal the need for pastoral counseling or hospice care, as LBD is often life-shortening. Caregivers may also require referral for counseling due to depression or burnout.

Treatment

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The importance of early treatment is supported by recent data suggesting that patients with LBD, might respond better to cholinesterase inhibitors than patients with AD. In addition, an early diagnosis of DLB will help treating physicians know which medications to avoid or use cautiously, especially the antipsychotics (aka neuroleptics).

IMPORTANT NOTE: It is estimated that a high percentage of DLB patients exhibit worsening parkinsonism, sedation, immobility, or even neuroleptic malignant syndrome (NMS) after exposure to antipsychotics. NMS is a rare, life-threatening medical emergency characterized by fever, generalized rigidity and breakdown of muscle tissue that can cause renal failure and death. The heightened risk of NMS in DLB mandates that typical or traditional antipsychotics (such as haloperidol, fluphenazine or thioridazine) should be avoided. Atypical antipsychotics have been available for treating mental illness for 25 years and may be safer to use in patients with DLB, but only with extreme caution. Patients with PDD appear to have a lower risk of an adverse reaction to antipsychotics, but all patients with LBD should be carefully managed with any antipsychotic drug.

Goals of Care

Comprehensive, palliative management of LBD should begin at diagnosis to promote the best quality of life for the person with LBD and the family and caregivers. An early, wide-ranging discussion of symptoms and goals of treatment will proactively inform both the provider and the primary family caregiver about important future decisions.

The goals of care may change as the illness progresses due to emerging or evolving issues of safety, caregiver burden, or comorbid illness. An ongoing dialogue between the healthcare providers, patient and family about management, especially in regard to later, end-of life decisions, should occur regularly throughout the course of the illness.

First-Line Medications

Cognitive Impairment and Fluctuations

Acetylcholinesterase inhibitors (AChEIs): AChEIs are the current standard of care for treating cognitive and psychiatric symptoms of LBD. Three have been approved by the FDA for treatment of AD; donepezil (Aricept), rivastigmine (Exelon), and galantamine (Razadyne). Rivastigmine is the only one of the three that is FDA-approved for treating LBD, specifically PDD. The other two are used “off label.” There is no compelling evidence that any one of the three is superior to the other two in treating LBD1.

AChEIs are generally well-tolerated by patients with LBD, but not always. For example, in a study of rivastigmine in PDD, approximately 10% of patients experienced worsening of tremor, but it was not usually clinically significant.Healthcare providers and patients/caregivers must always be on guard for the development of adverse effects of any drug.

Memantine (Namenda) is another drug (with a different pharmacological mechanism of action) approved for AD but not LBD and is also used off label as an add-on therapy to AChEIs, typically in patients with more severe dementia. Only a few studies of memantine have been done in LBD, with mixed results.3,4

Parkinsonism

Levodopa is an effective and relatively safe drug for treating motor symptoms in PD; most patients with LBD respond with improvement in motor function, without side effects, as long as the dosing is kept at the lowest, most effective level.However, all patients with LBD are vulnerable to the development of medication-induced behavioral or psychotic symptoms. Not everyone with LBD requires anti-parkinsonian treatment, particularly those with DLB. In fact, some patients with DLB may go years before showing signs of parkinsonism. Given the potential for adverse effects, healthcare providers should use levodopa in this setting only when symptoms are truly bothersome and should start with a low dose and titrate up slowly.

Dopamine agonists are less effective than levodopa for treating motor symptoms and are more likely to cause non-motor side effects, especially drug-induced psychosis even at low doses. Dopamine agonists may also cause excessive daytime sleepiness and swelling of the legs. Other PD medications such as amantadine, COMT inhibitors, MAO inhibitors, and anticholinergics, likewise, can induce psychosis and exacerbate cognitive impairment and should be avoided in DLB. Furthermore, dementia is a contraindication to deep brain stimulation, even when the patient is an otherwise good candidate.6,7

Behavioral Changes

The overarching goal of managing psychotic and behavioral disturbances in LBD is to improve outcome without compromising safety of the patient and others. If hallucinations (usually visual) are not frightening to the patient, even if they are considered bothersome by the family, treatment with a drug may not be needed, especially if the patient understands that the hallucinations are not real. On the other hand, delusions (a false belief held with strong conviction despite evidence to the contrary), are often socially disruptive and in most cases, should be treated, most productively by a mental health professional.

The first line intervention should be non-pharmacologic measures including evaluation for acute physical ailments that may be provoking behavioral disturbances (e.g., fecal impaction, pain, decubitus ulcers, urinary tract infection and other febrile illnesses). Medications that can potentially cause agitation, especially those with anticholinergic properties, including amantadine, certain antidepressants, and those antihistamines with significant anticholinergic effects should be reviewed for need and stopped if possible. It may be necessary to reduce or discontinue all PD medications other than low dose levodopa.

Although little evidence exists to guide specific pharmacotherapy for hallucinations and behavioral symptoms in LBD, the following background literature review should be helpful.

AChEI for Behavioral Symptoms

Deficits in the brain’s supply of the neurotransmitter acetylcholine probably contribute to cognitive impairment and psychosis in LBD. Visual hallucinations may predict a favorable response to treatment with an AChEI. By comparison, a meta-analysis of 6 large trials in AD, which also causes depletion of acetylcholine in the brain, showed a small but significant benefit of AChEI treatment in decreasing neuropsychiatric symptoms. Moreover, AChEIs may selectively ameliorate psychosis and anxiety compared with other psychiatric symptoms.

A few published reports have shown behavioral improvement in patients with LBD treated with the AChEI rivastigmine. In a large multicenter trial, rivastigmine resulted in improvement by 30% from baseline in psychiatric symptoms.8 In a comparator study of rivastigmine in patients with clinical diagnoses of DLB and AD, treatment was associated with improvement in hallucinations, anxiety, and sleep disturbances only in the DLB group.9

Behavioral Medications to AVOID
  • Typical antipsychotics (neuroleptics) should always be avoided in the management of patients with LBD, especially DLB, who risk severe worsening of all symptoms, and, as mentioned above, may develop potentially fatal NMS.10
  • Atypical antipsychotics, especially those with high D2 receptor antagonism (such as olanzapine and risperidone), should also be avoided due to the risk of severe neuroleptic sensitivity reactions,  neuroleptic malignant syndrome, worsening parkinsonism, somnolence and orthostatic hypotension.11,12 Quetiapine and clozapine are two from this class of drugs that have been shown to be well tolerated in low doses for treatment of psychosis (see below).
  • Benzodiazepines and benzodiazepine-like sedative hypnotic medications (such as zolpidem) should not be first-line agents given their risk of sedation and paradoxical agitation. (One exception is clonazepam at night for management of REM sleep behavior disorder.)
  • Opiates or tramadol should be avoided; alternatives for pain management include nonsteroidal anti-inflammatory agents and acetaminophen.
Atypical Antipsychotics

If long-term treatment with AChEIs is ineffective, or more acute symptom control of behavior is required, it may be difficult to avoid a cautious trial of an atypical antipsychotic. When medications are needed to modify behaviors, they should be used for the shortest duration possible.

Quetiapine and clozapine are preferred when psychosis warrants drug treatment. Clozapine has been demonstrated to be effective for PD psychosis in several randomized clinical trials. However, due to the infrequent but serious risk of potentially fatal agranulocytosis (severe depression of white blood cells), and the corresponding need for intrusively frequent blood monitoring to prevent such a reaction, clozapine is not the drug of first choice. Quetiapine is a safer alternative atypical antipsychotic in PDD and DLB, typically in the dose range of 6.25 mg to 50 mg a day, although higher doses may be used if tolerated and necessary. As with any drug in this setting the low slow approach is required. Pimavanserin, now FDA-approved for the treatment of psychosis in PD13, has not yet been studied in DLB.

Black box warning: The FDA’s ‘black box warning’ indicates both typical and atypical antipsychotics are associated with an increased risk of mortality and morbidity in elderly patients with dementia-related psychosis. However, if used carefully according to the guidelines mentioned above, the risk of mortality is extremely low. Physicians should discuss the risks and benefits of these types of medications, so that patients with LBD and caregivers can weigh the impact of the symptoms against the potential risks associated with these medications.

Non-Pharmacological Methods to Managing Behavioral Changes

Refer to LBDA’s publication, Understanding Behavioral Changes in Dementia, which can be downloaded at http://lbda.org/content/understanding-behavioral-changes-dementia

Emergency Room Treatment of Psychosis

Refer to LBDA’s publication, Emergency Room Treatment of Psychosis, which can be downloaded at http://lbda.org/go/er

REM Sleep Behavior Disorder and Insomnia

 Melatonin is a safe, over-the-counter natural substance that may also offer benefit either as monotherapy without risk or in conjunction with clonazepam. Prescription medications may be prescribed.

For insomnia, treatment can be attempted with antidepressants, low doses of benzodiazepines or specific sedative-hypnotic agents. These medications have not been extensively studied in LBD, and worsening confusion and daytime sedation is a potential side effect of sedative-hypnotics.

Autonomic Dysfunction

Orthostatic hypotension (drop in blood pressure) is a common manifestation of LBD, often presenting as lightheadedness or fainting, mainly when standing. Initial management consists of simple measures such as arising slowly from a reclining or seated position, leg elevation when sitting, elastic stockings, increasing salt and fluid intake, and if possible avoiding medications that are known to exacerbate orthostasis. If simple measures fail, medications can be used.

Medications with anticholinergic activity can be used to treat urinary urgency, frequency and urge incontinence. They should be used cautiously however, given their risk of exacerbating cognitive problems because of their anticholinergic properties.

Constipation can usually be treated by exercise and modifications of the daily diet to include foods with high fiber content (fruits and vegetables) and bran cereal. Laxatives, stool softeners and mechanical disimpaction may be needed.

Erectile dysfunction (ED), loss of libido and impotence in LBD is likely multifactorial. While autonomic dysfunction is a possible cause, other factors often contribute, such as depression, poor bed mobility, pain and co-morbid illnesses. Treatment can be complex, requiring a urologic and/or psychiatric consultation. Medications for ED include three inhibitors of phosphodiesterase-5 (sildenafil, tadalfil, and vardenafil), the natural substance yohimbine, or the intracavernal injectables phentolamine and prostaglandid E. If immobility in bed is a major problem, a bedtime dose of levodopa is worth a try. If mood disturbances are associated with sexual dysfunction, psychotherapy or a trial of an antidepressant can be considered, although antidepressants often cause ED.

Other Drugs to Avoid

  • Anticholinergics, as mentioned above, may worsen cognitive impairment, confusion, and hallucinations.
  • Benzodiazepines are best avoided unless specifically indicated, given their risk of sedation, increasing risk of falls, worsening cognition, and potentially paradoxical agitation.
  • Inhaled anesthetics should be avoided when possible to minimize delirium and a decrease in functional ability.
  • OTC sleep agents such as Tylenol or Advil PM and bladder-control medications may cause agitation. Many of these drugs contain diphenhydramine, an antihistamine with anticholinergic effects.

1. Bhasin, M., Rowan, E., Edwards, K. & McKeith, I. Cholinesterase inhibitors in dementia with Lewy bodies—a comparative analysis. Int. J. Geriatr. Psychiatry 22, 890–895 (2007).
2. Emre, M. et al. Rivastigmine for dementia associated with Parkinson’s disease. N. Engl. J. Med. 351, 2509– 2518 (2004).
3. Wang, H.-F. et al. Efficacy and safety of cholinesterase inhibitors and memantine in cognitive impairment in Parkinson’s disease, Parkinson’s disease dementia, and dementia with Lewy bodies: systematic review with meta-analysis and trial sequential analysis. J. Neurol. Neurosurg. Psychiatry 86, 135–143 (2015).
4. Stinton, C. et al. Pharmacological management of Lewy body dementia: a systematic review and metaanalysis. Am. J. Psychiatry 172, 731–742 (2015).
5. Goldman, J. G., Goetz, C. G., Brandabur, M., Sanfilippo, M. & Stebbins, G. T. Effects of dopaminergic medications on psychosis and motor function in dementia with Lewy bodies. Mov. Disord. 23, 2248–2250 (2008).
6. Rothlind, J. C. et al. Neuropsychological changes following deep brain stimulation surgery for Parkinson’s disease: comparisons of treatment at pallidal and subthalamic targets versus best medical therapy. J. Neurol. Neurosurg. Psychiatry 86, 622–629 (2015).
7. Weaver, F. M. et al. Bilateral deep brain stimulation vs best medical therapy for patients with advanced Parkinson disease: a randomized controlled trial. JAMA 301, 63–73 (2009).
8. McKeith, I. et al. Efficacy of rivastigmine in dementia with Lewy bodies: a randomised, double-blind, placebo-controlled international study. Lancet 356, 2031–2036 (2000).
9. Rozzini, L. et al. Cognitive and psychopathologic response to rivastigmine in dementia with Lewy bodies compared to Alzheimer’s disease: a case control study. Am. J. Alzheimers Dis. Other Demen. 22, 42–47 (2007).
10. McKeith, I., Fairbairn, A., Perry, R., Thompson, P. & Perry, E. Neuroleptic sensitivity in patients with senile dementia of Lewy body type. BMJ 305, 673–678 (1992).
11. Walker, Z. et al. Olanzapine in dementia with Lewy bodies: a clinical study. Int. J. Geriatr. Psychiatry 14, 459–466 (1999).
12. Culo, S. et al. Treating neuropsychiatric symptoms in dementia with Lewy bodies: a randomized controlled-trial. Alzheimer Dis. Assoc. Disord. 24, 360–364 (2010).
13. Cummings, J. et al. Pimavanserin for patients with Parkinson’s disease psychosis: a randomised, placebocontrolled phase 3 trial. The Lancet 383, 533–540 (2014).
14. Aurora, R. N. et al. Best practice guide for the treatment of REM sleep behavior disorder (RBD). J. Clin. Sleep Med. JCSM Off. Publ. Am. Acad. Sleep Med. 6, 85–95 (2010).

Discussing Diagnosis and Prognosis of LBD

Informing the Patient (and Caregiver)

The preparedness of patients and caregivers to receive an LBD diagnosis varies significantly between those with DLB and PDD. While there is increasing awareness of DLB among healthcare practitioners, public awareness remains relatively low. The multiple presenting features of DLB may raise suspicion in family members of more widely known disorders such as AD or PD, or alternatively, a possible psychiatric disorder. As most patients and families will first be introduced to DLB upon initially receiving the diagnosis, providing sound information and shaping appropriate expectations is essential to quality care. After a PD diagnosis, persons with PD and their caregivers are usually made aware of the potential of MCI or dementia to develop, so they may be more-well prepared to receive a PDD diagnosis.

While difficult news to receive, an LBD diagnosis can provide a certain degree of comfort as it helps patients and families make sense of their experiences. Discussion about LBD and its anticipated impact may take place over multiple office visits, due to the complexity of clinical and caregiving matters.

Documenting an LBD diagnosis is imperative, due to severe medication sensitivities and relatively low awareness of LBD outside of specialists. Family caregivers sometimes serve as the first line of defense against administration of traditional neuroleptics in hospitals. It is also critically important to make sure that one or more of the core manifestations of LBD is not caused or exacerbated by iatrogenic medications such as neuroleptics or anticholinergic agents.

Prognosis

Like AD, the rate of progression of LBD is highly variable. The typical lifespan after diagnosing LBD is about 5-7 years.1,2  Anecdotal experience suggests that the trajectory of LBD progression may mirror the rate of early symptom onset and progression. The prospect of future therapeutic developments that may alter disease progression within this time frame should punctuate any discussion of prognosis.

Progression of LBD

There are no formally defined stages of LBD like there are in AD. Until then, 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

  • Often recognized only in retrospect, 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, return to baseline, followed by a subsequent mental and physical decline.

Time for Diagnosis and Treatment

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

Advancing Disease

  • Sudden increases in confusion, psychosis and behavioral disturbance may be precipitated by medication reactions or co-morbid medical conditions.
  • Severe neuroleptic sensitivity reactions may provoke 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

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, syncope, 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.

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Thank you for your interest in learning more about LBD and LBDA. At this time, we are not able to ship materials outside of the US. However, we have many useful resources on our website including:

LBD: Information for Patients, Families and Professionals

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.

Comprehensive LBD Symptom Checklist

Comprehensive Treatment Summary

Understanding Behavioral Symptoms of LBD

Diagnosing and Managing Lewy Body Dementia

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