Tag: Featured

Preparing LBD Families about End of Life

End of life factors are known to be different in LBD compared to Alzheimer’s disease. The progression of LBD averages 5-7 years from onset to end of life. This is considerably shorter than the 8-10 years in Alzheimer’s disease. Adding typically-delayed diagnosis, this results in a compressed time to address LBD’s complex diagnostic, clinical and caregiving issues.

A new study highlights that Lewy body dementia (LBD) families need better guidance from their healthcare professionals on end of life issues. This includes likely causes of death, timing of engaging hospice services, and what to expect at end of life.

Led by Melissa Armstrong, MD, MSc of the University of FL, Gainesville, researchers explored the end of life experiences in people with one form of LBD: dementia with Lewy bodies (DLB). The study, a collaboration with the Lewy Body Dementia Association, used an online survey about end of life experiences.

The study included caregivers, family members and friends of people who died within the previous 5 years with a DLB diagnosis. Of the 658 respondents, most (89%) were female with a median age of 50-69. The study revealed most care recipients died within 5 years of their diagnosis.

Less than half of the full cohort reported early advanced care planning with their physician (within the first 1-2 years). This underscores a missed opportunity for the patient to discuss preferences and priorities for care with their physician before the disease progresses.  Seventy percent (70%) indicated having advanced directives completed prior to diagnosis. Only 10% indicated advanced directives were revised after diagnosis.

Caregivers indicated providers rarely addressed what to expect at end of life (40% total, but only 22% to a helpful degree). Most conversations on end of life issues were first broached by the caregiver.

Hospice services were used by 78% of respondents, but with widely varying lengths of time. The median time for hospice service use was 1-2 months.  Two thirds of respondents felt hospice was started at the right time. However, that left a substantial minority (25%) feeling hospice was started too late, often within weeks of death. Only 3% felt hospice was started too early.

Care recipients commonly died in skilled nursing or memory care (43%) or at home (36%). Most caregivers (74%) reported they expected the care recipient’s death. Respondents reported the most common causes of death were failure to thrive, such as not eating or drinking (65%), pneumonia and swallowing difficulties (23%). Less common causes included other medical conditions (19%) and complications from falling (10%).  Suicide was reported as very rare (less than 1%).

This study underscores important opportunities for physician-initiated discussions on advanced care planning with persons in the early stage of LBD, counselling patients and their families on the use of palliative care and hospice and preparing patients and LBD families on what to expect at end of life.

This study was supported by the University of Florida Dorothy Mangurian Headquarters for Lewy Body Dementia, the Raymond E. Kassar Research Fund for Lewy Body Dementia, and the Lewy Body Dementia Association. Dr. Armstrong is the primary investigator at University of Florida’s LBDA Research Center of Excellence.

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

Lewy and Lumbar Punctures

Did you know that spinal fluid is extremely valuable in LBD research? It allows scientists to study changes in the levels of proteins that might be associated with LBD, Alzheimer’s disease, or other disorders that can only be found in spinal fluid. By studying spinal fluid from people with LBD, researchers hope to answer important questions about LBD, like:

  • How to diagnose LBD earlier and more accurately.
  • How to measure the effectiveness of an experimental treatment.
  • How levels of different proteins relate to the symptoms people with LBD experience.

Download “What You Need to Know About LBD and Lumbar Punctures ”today!

And consider participating in an LBD research study!

Double Your Donation

Many companies offer matching gift programs to encourage employees to contribute to charitable organizations. Some provide matching funds to support employee volunteer hours. Most of these programs match contributions dollar for dollar, and some will even double or triple the amount of your gift!

To find out if your company will match gifts to the Lewy Body Dementia Association click here.

If you do not find your employer through this search, please check with your company to see if it offers a matching gift program that will match your gift or volunteer hours to LBDA.

You may mail or email your completed matching gift form to:

Lewy Body Dementia Association
912 Killian Hill Road, SW
Lilburn, GA 30047


Biomarkers: The Pathway to Earlier LBD Diagnosis and Better Treatments

In LBD clinical research, scientists use tests that measure both the symptoms of a disease and also what biological changes are underway. Those tests that detect the presence or progression of a biological disease process are called biomarkers.

Finding LBD biomarkers is one of the top research recommendations for LBD in the National Plan to Address Alzheimer’s Disease (and related dementias). Thanks to increases in dementia research funding, the National Institutes of Health recently funded four new LBD biomarker research studies.

While the studies all have different aims, they include a core set of physical and neurological examinations and interviews, and collection of certain biological fluid samples. Each of these studies will carefully assess people with LBD for up to five years, with the goal of reaching a better understanding of how biological changes result in the symptoms of the disease. This can ultimately lead to better diagnostic tools and treatments. These studies will also establish a new and rich resource for the LBD scientific community – a national, centralized collection of LBD clinical and biological data.

This represents a major step forward and the participation of the LBD community in these studies will be vital. This article will help you understand what clinical assessments and biomarkers are involved and how they will help advance our understanding of LBD.

LBD Biomarker Studies: What to Expect

Those who are interested in participating in LBD research can be confident that they will learn right up front exactly what tests the study includes. All research studies include a process called “informed consent” in which the person volunteering formally agrees to participate in the study. Part of the informed consent process involves a member of the study team explaining the study, any treatments or tests involved, any benefits from participating in the study, and any risks involved.

To provide the researchers with a thorough understanding of a person’s health, participants will be asked questions to set a baseline at the start of the study. This starts with their personal and family’s medical history. A simple cognitive assessment will be done, and participants will be asked basic questions about mood or behavioral changes. Blood pressure, height and weight will be taken and a neurological exam will be done to identify any changes in movement including tremor, stiffness and slowness.

The study team will then look more deeply at LBD symptoms. These assessments may take several hours, and may be administered over two sessions. Extensive cognitive testing will help measure what skills have been affected, such as memory, language, or executive function. Questionnaires will help identify the range of mood changes, like depression or anxiety, as well as psychiatric symptoms like hallucinations or delusions. A careful assessment will be done to identify if the participant has any sleep disorders. A smell test will be given to detect any loss of the ability to smell. And other tests will identify changes in the body’s ability to regulate autonomic systems like blood pressure and pulse.

Biofluids (blood, urine and cerebrospinal fluid) provide information about the presence of other medical conditions, but are also studied to find changes that are linked to LBD and related disorders. This may include changes in genetic factors or levels of certain proteins associated with neurological disorders. The presence of these biomarkers may predict future symptoms and rate of progression.

One of the most important tests in these studies is called a lumbar puncture (or spinal tap). A lumbar puncture is the only way to get direct access to spinal fluid, the clear liquid that circulates through the brain and spinal cord. This sample of fluid gives researchers the ability to measure levels of proteins produced by the brain. Examining levels of key proteins that are associated with dementia is absolutely vital to the development of new LBD diagnostic tools and treatment options, and has revolutionized the study of Alzheimer’s disease. Because it is so essential, a lumbar puncture is considered mandatory to participate in all four LBD biomarker studies.

Advances in lumbar puncture techniques have significantly reduced the risks and side effects, making an increasingly common part of cutting-edge dementia research studies. To learn more, view this 5-minute video on lumbar puncture.

Tests Unique to Certain Studies

Depending on which of the 4 studies you choose to participate in, additional assessments may be administered to answer the aims of the study. Participants may have brain scans to help detect changes in brain structure and function. A magnetic resonance imaging (MRI) scan allows researchers to see physical changes in the brain. (Examples include the brain shrinkage seen in Alzheimer’s disease or the presence of a tumor.) A second type of scan, called single photon emission computerized tomography or SPECT, is used to look at a functional change associated with LBD. A nuclear medicine compound called 123I-FP-CIT (also called DAT scan) is used with SPECT to find changes in the brain’s abilities to use a neurotransmitter called dopamine. Dopamine is important in movement and mood.

If any of the participants should happen to pass away during certain studies, their brains can be carefully examined by a highly-trained neuropathologist. At the present time, this is the only way to currently confirm the LBD diagnosis. Because these research participants will be so carefully studied for several years, researchers can combine the research data collected during life with what is seen in the brain after death. This is the most powerful information scientists can use to advance our understanding of LBD. The donation of a study participant’s brain is the “ultimate gift” a person can make to research. Learn more about brain donations and brain autopsies in this helpful article from LBDA.

Participate in Research

These studies are funded by the National Institute of Health through a program called the Parkinson’s Disease Biomarker Program (PDBP). To learn more about these studies, visit the PDBP’s website. To find research studies and clinical trials now enrolling people with LBD, visit LBDA’s Participate in Research page.

The Importance of LBD-Specific Support Groups

A recent poster presented at the 2016 Alzheimer’s Association International Conference suggests that LBD caregivers experience unique benefits from attending an LBD-specific support group compared to a general dementia support group.

Christopher Zalewski of the Cleveland Clinic Lou Ruvo Center for Brain Health, in collaboration with the Lewy Body Dementia Association and Taylor Young of the Cleveland Area Chapter of the Alzheimer’s Association recently launched a support group for LBD caregivers in response to feedback from LBD patients and families.

LBD families reported difficulty relating to Alzheimer’s caregivers whose challenges often centered around memory loss, which is not always a concern for LBD caregivers. The lack of familiarity with LBD symptoms also resulted in LBD caregivers receiving misguided or ineffective advice.

A number of common LBD caregiver needs emerged from group discussion. On the movement side, families need assistance managing movement changes such as ‘freezing’ or slowed movement. Emotionally, family caregivers feel a lack of understanding and awareness from their peers regarding LBD. They also need help responding to hallucinations, delusions and fluctuations in LBD symptoms. Challenges in obtaining a correct diagnosis and avoiding medications potentially harmful in LBD were common clinical concerns. In addition, creating a safe environment at home in response to fluctuations is a consistent issue.

Quotes from LBD caregivers participating in the discussion underscore the importance of LBD-specific support groups. “This group is so necessary for early stage Lewy body dementia caregivers. I had no idea about how different the journey would be compared to Alzheimer’s.”

A general satisfaction survey of 10 members from the new support group confirms the participants find the group of significant value.  All respondents agreed or strongly agreed that they now know more about LBD resources, would recommend the group to other LBD caregivers, and found the group to be helpful overall. Nearly all (90%) respondents agreed or strongly agreed that the group helped them prepare for the future.

The Lewy Body Dementia Association offers training and resources to help both laypersons and professionals launch new groups across the country. For more information, contact Pamela Corsentino at pcorsentino@lbda.org.

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).



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.


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.


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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


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).