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Lewy body dementia webinar final
- 1. Dementia with Lewy Bodies: Charles E. Driscoll, MD, FAAFP Geriatrician; Emeritus Professor of Family Medicine University of Virginia Lynchburg, VA Angela Taylor Director of Programs Lewy Body Dementia Association Lilburn, GA Clarity Emerging from Confusion
- 2. Poll • Do you work with or know someone who has Lewy Body Dementia? • Yes • No
- 3. Abbreviations • DLB – Dementia with Lewy Bodies • LB – Lewy Body • LBD – Lewy Body Dementia • MMSE – Mini Mental State Examination • PDD – Parkinson’s Disease Dementia • REM – Rapid Eye Movement
- 4. Learning Objectives Recognize it! Know how it differs from other dementias Understand LB is a spectrum of diseases Treatment and Management issues Family Care and Support Issues
- 5. The Slow Road of Discovery Dr. Friedrich Lewy identifies protein 1912 Hallmarks described in 1996 Added to International Classification of Diseases in 2005 Today, recognized as the second most common form of progressive dementia
- 6. Micrograph of brain cells containing a Lewy body which is an abnormal aggregation of protein Lewy bodies can be more easily detected using special antibody staining against the α-synuclein protein Tau protein and tangles within a neuron cell
- 7. The Many Faces of Lewy Body
- 8. Case Scenario - Hal • Hal, a veteran, retired from his work as an auto mechanic at age 68. • His boss had noticed a number of Hal’s repairs needed some review and “tweaking”. • Hal’s wife noticed he is more forgetful, becomes confused when following directions, and has some difficulties finding “the right word” in conversation. • Health is good with BP 134/84 and his only medications are a baby aspirin and a multi-vitamin daily. • Smokes 1ppd.
- 9. Poll… • Select the elements necessary to make a diagnosis of dementia • Demonstrated memory loss • Hallucinations • Interference with day to day function • Delusions • 2 or more cognitive areas involved
- 10. Does He Have Dementia? Necessary Elements for a diagnosis: Memory loss: subjective and objective Trouble in a second cognitive domain Language, Executive Function, Motor Skills, Social Skills, Visual- Spatial, Learning, Attention Interference with day-to-day function
- 11. Poll – open ended question • Name 3 symptoms that might suggest a diagnosis of DLB? Please use your Questions tab to enter three such symptoms (separated by commas)
- 12. Another Look at Our Patient, Hal Having been diagnosed with early dementia, Hal is seen again in 6 months. His wife notes some new problems: • He is sleeping and barely rousable for long periods during the day • He has become suspicious when his wife leaves the house, and thinks she is trying to sell their home • Sleep at night is disrupted by nightmares with “hitting at something in the dream” • A “sedative” was prescribed for the sleep problem, but it had paradoxical effects, raising his anxiety and restlessness
- 13. What Clues Can Suggest DLB? Fluctuation – good days and bad days REM sleep behavior disorder Difficulty with complex mental activities Day-time sleepiness Medication sensitivity – tranquilizers and neuroleptics Motor dysfunction Vivid hallucinations/Delusions Autonomic dysfunction Abnormal brain imaging
- 14. REM Sleep Behavior Disorder • Acting out dreams • Sometimes injured by falling out of bed • Sometimes injure sleep mate • May appear years before DLB diagnosis • Red flag symptom REM sleep behavior disorder Difficulty with complex mental activities Fluctuation – good days and bad days Day-time sleepiness Medication sensitivity Vivid hallucinations/Delusions Motor dysfunction Autonomic dysfunction Abnormal brain imaging
- 15. Difficulty with Complex Mental Activities • Executive function severely impaired • Visuospatial dysfunction • Decline in attention • Memory often relatively spared in the early stage REM sleep behavior disorder Difficulty with complex mental activities Fluctuation – good days and bad days Day-time sleepiness Medication sensitivity Vivid hallucinations/Delusions Motor dysfunction Autonomic dysfunction Abnormal brain imaging
- 16. Cognitive Fluctuation • Most difficult to define and identify • Fluctuation of MMSE scores by >5 points up & down over 6-month period • Family members say: • “appears drowsy, but awake”, “looks dazed” • “not aware of what is going on” • “can be fine one day and confused the next” • Minutes, hours or days between periods REM sleep behavior disorder Difficulty with complex mental activities Fluctuation – good days and bad days Day-time sleepiness Medication sensitivity Vivid hallucinations/Delusions Motor dysfunction Autonomic dysfunction Abnormal brain imaging
- 17. Hallucinations and Delusions Hallucinations – usually visual • more frequent in patients with poor eyesight • not unpleasant, but very real Delusions – usually misidentificati on type • someone is present in the room • phantom boarder delusion • people are stealing things REM sleep behavior disorder Difficulty with complex mental activities Fluctuation – good days and bad days Day-time sleepiness Medication sensitivity Vivid hallucinations/Delusions Motor dysfunction Autonomic dysfunction Abnormal brain imaging
- 18. Motor Dysfunction • Fine motor skills are lost • Rigidity • Parkinson symptoms • Tremor • Slowness of movement (bradykinesia) • Shuffling gait • Loss of balance • Falls REM sleep behavior disorder Difficulty with complex mental activities Fluctuation – good days and bad days Day-time sleepiness Medication sensitivity Vivid hallucinations/Delusions Motor dysfunction Autonomic dysfunction Abnormal brain imaging
- 19. Autonomic Dysfunction REM sleep behavior disorder Difficulty with complex mental activities Fluctuation – good days and bad days Day-time sleepiness Medication sensitivity Vivid hallucinations/Delusions Motor dysfunction Autonomic dysfunction Abnormal brain imaging
- 20. Putting it All Together LEWY BODY DEMENTIA Visual hallucinations and/or sensitivity to neuroleptics Acting out dreams (REM Sleep Behavior Disorder) and/or other sleep disturbances Motor dysfunction (may look like Parkinson’s) Autonomic dysfunction Cognitive dysfunction (may look like AD) Fluctuating levels of attention (may mimic delirium)
- 21. Taxonomy is somewhat arbitrary • No major clinical differences, both, DLB and PDD are LBD • ICD-9 codes are the same – 331.82 Is it DLB, PDD, or LBD? 12 months PDD DLB BY CONSENSUS: IF
- 22. Poll • What is one medication that should always be avoided in DLB? • Aricept • Valium • Seroquel • Haldol • Prozac
- 23. Treating Behavior LBD Disturbances Always evaluate for physical problem. • Is it delirium? Avoid or reduce medications. •Benzodiazepines, bladder Avoid traditional antipsychotics •Hallucinations and psychotic behaviors appear to be related to cholinergic deficits. •Try: • Donepezil, Rivastigmine, and Galantamine – a long term “fix.” • If urgent, try Quetiapine or Clozapine. • Note “black box” warnings to family. Use for shortest duration •Educate patient/family
- 24. Research Needed: Racial and Socioeconomic Disparities Parkinson’s Disease African Americans Whites Disease prevalence may be higher X Seek care earlier at specialty clinic X Greater disability X Greater disease severity X More likely to be prescribed dopaminergic medications, especially newer ones X More likely to be prescribed antipsychotics X
- 25. Importance of an Early Diagnosis • These patients respond differently to: • Neuroleptic medications • Anti-cholinesterase inhibitors • Parkinson’s medications • Different progression than Alzheimer’s • Shorter prognosis • Need advance planning • More family support needed • New research emerging at rapid rate
- 26. Poll • Do you work with or know someone who has LBD? • Yes • No
- 27. Quality of Life Matters • Comprehensive care of LBD symptoms improves quality of life and reduces caregiver burden • Coordinate treatment with patient’s other doctors to avoid exacerbating symptoms • Consider referrals to Physical Therapist, Occupational Therapist and Speech Therapist
- 28. Caregiver burden • Treat the primary caregiver as a second patient • Burden is associated with cognitive, behavioral or affective symptoms • Especially disturbances in mood and sleep • Caregivers should expect crises, especially trips to the emergency room
- 29. Poll – open ended question • Name some of the signs of caregiver burnout Please use your Questions tab to enter such signs (separated by commas)
- 30. Meal services Senior transportation Caregiver support groups Geriatric case manager Home health aides Adult day programs Long term care providers Helpful Community Services
- 31. Caregiving Tips to Share • Focus more on the individual than the disorder • Maintain a sense of humor • Limit noise and distractions • Simplify questions and expectations • Keep a regular routine • Address underlying emotions instead of behavior. • Stay flexible to fluctuating symptoms • Don’t accept sudden changes as a “normal” progression
- 32. Poll – open ended question • What would you do if you suspect a client has undiagnosed LBD or is possibly misdiagnosed with another disorder?
- 33. Help Relieve Caregiver Burden • If you or the family suspects LBD – urge a second opinion at a specialty clinic • Encourage learning about LBD and talking with other caregivers • LBD is likely to overstress and burden families. • Encourage them to accept help • Remind caregivers their well-being is equal to patient well-being • Recommend community-based services and resources • Watch for grieving
- 34. Help is Available Outreach EducationResearch Family Services LBD Caregiver Link (800) LEWY SOS (800) 539-9767 Caregiver support groups An active online community
- 35. Download free diagnostic and comprehensive symptom checklists from LBDA.org Order print copies of this 40 page booklet from NIA’s Alzheimer’s Disease Education and Referral Center Educational Resources
- 36. Stay Informed with LBDA • Visit our homepage, www.lbda.org and click this image: • Or visit: http://www.lbda.org/content/sign-lewy-body- digest-0
Editor's Notes
- DLB is responsible for 10-20 percent of all dementias, approximately 1.5 million Americans. May coexist in the presence of other dementias, e.g. vascular or AZD Prevalence increases with age – mean age at presentation is 75, slightly more men than women affected
- This presentation should make you more aware of some of the unique features of DLB. Of particular importance are issues of prognosis and treatment. This diagnosis is very difficult to make and often confused with AZD early in its course The longer the patient is under observation and the more “eyes on the patient” to gather information, the more accurate and helpful we can be.
- Round eosinophilic intra-cytoplasmic inclusion bodies Specific stains can be used to detect the deranged protein, alpha synuclein Can be found in brainstem areas as well as cortical areas and hippocampus Amyloid plaques similar to AZD can also be seen, but are not as numerous and AZD hallmark of neuro-fibrillary tangles are rare or non-existant
- Lewy Body Disease is a spectrum disorder. Dementia, MSA, Down Syndrome, and Parkinson’s all share the findings of neuronal destruction and Lewy body formation.
- Correct answers are memory loss, interference with function, and 2 or more cognitive areas involved to achieve the diagnosis under DSM 5 criteria. Also, absence of delirium and not explained by another mental disorder such as depression
- This case scenario probably indicates he has dementia. Agism may attribute some symptoms to “just getting older”, but these findings are more substantial than normal aging. New DSM5 also requires no evidence of delirium and not explained by another mental disorder, e.g. depression
- Lewy Body is suggested by symptoms as follows. A hallmark of DLB is the appearance early on of delusions and hallucinations which typically do not occur until late in AZD. Response to medications is also a marker for DLB.
- Here are the remarkable symptoms and let’s take a closer look at a few of them.
- Difficulty appears when there is a step approach to tasks, e.g. making a shopping list, going to the store, finding the items and checking out, then following a recipe. Visuospatial tasks are those that require eye-hand coordination such as copying a drawing or tracing a path with your finger
- Wake-sleep cycles are abnormal Can do a task one day and not the next
- “the baby” and “the phantom border” are two common delusions Hallucinations are sometimes comical to others, but seriously taken by the patient
- Combined with visuospatial dysfunction, this problem can make it hard to feed oneself. Can’t button buttons. Patient appears lethargic and slowed down. Extreme fall risk.
- Constipation, lacrimation, salivation, urinary incontinence or bladder paralysis can occur. Of particular concern is hypotension which when combined with motor dysfunction, makes falling a certainty.
- A diagnosis of Lewy Body dementia is made by carefully observing all the patients problems and tying the findings together. Key is continuity of care and observance over time span; with fluctuations of good days and bad, may never see it all come together at once such as with a single office visit. Keeping a symptom diary will help everyone involved.
- Share the same ICD code as a spectrum disorder. Are PD and DLB the same? Arbitrary taxonomy would say so.
- Especially analgesics, psychotropics, sedative hypnotics, and anticholinergics. Haldol is the most pronounced of these.
- This is an approach to understanding and managing behavioral disturbances of which there will be many. Always need to rule out physical disease such as infection, silent MI, etc. Systematically assess, then try reducing number or dose of some of the medications. Look for new things added to the regimen by someone else or OTC. If control needed, avoid long-acting benzodiazepines and haldol. Neuroleptic, malignant hyperthermia syndrome
- Because LBD wasn’t clinical defined until 1996, research is lagging behind diseases like Alzheimer’s and Parkinson’s. While there isn’t data available yet on racial and socioeconomic disparities in DLB, it may be useful to look at other Lewy body disorders like Parkinson’s disease for clues. Possible causes of disparities in PD: Patient attitudes on when to seek treatment at specialized center, problems in diagnosis, access to care, physician referrals
- This is the same question we asked at the start of this section of the presentation. Now having heard the symptoms, let’s ask it again. Usually an “AH-HAH” moment occurs here.
- LBD is considered a very treatable dementia, as many of its symptoms CAN be ameliorated to some degree with treatment. So comprehensive treatment of all of LBD symptoms is important, as is a focus on palliative care. Managing symptoms like insomnia and constipation can improve the quality of life for both the person with LBD and their primary caregiver. In addition to medications, non-pharmacological interventions are very important to quality of life. Physical therapists can help with movement problems through cardiovascular, strengthening, and flexibility exercises, as well as gait training and general physical fitness programs. Speech therapists may help with low voice volume and voice projection, poor speaking ability, and swallowing difficulties. Occupational therapists help identify ways to more easily carry out everyday activities, such as eating and bathing, to promote independence. Music or expressive arts therapists may provide meaningful activities that can reduce anxiety and improve well-being. Mental health counselors can help people with LBD and their families learn how to manage difficult emotions and behaviors and plan for the future.
- Something that many people don’t appreciate is how heavily LBD can impact the primary caregiver. It’s known that Alzheimer’s caregivers are prone to isolation and depression, have a higher risk of medical illnesses and feelings of guilt. LBDA did a survey of 962 LBD caregivers to understand how the disease affects them LBD caregivers report medium to high levels of burden ¾’s fear of the future for their loved one Over half feel stress between caring for their loved one and their personal responsibilities And half feel uncertainty about what to do as a caregiver 40% report feeling very isolated because nobody knows about LBD ¼ feel that no one understood what they are going through Spouses reported total greater burden than nonspouses, which is understandable. They are older and more likely to live alone with the person with LBD. Caregiver burden in LBD is associated with the presence of any cognitive, behavioral or affective symptom. Strongest associations in total caregiver burden were patient disturbances in mood and sleep Interestingly, when we asked them “Have you had to deal with a crisis situation with the person with LBD in the past year, 64% said yes. ¾ of those who had a crisis included a trip to the emergency room Other emergencies required EMS or law enforcement Only 12% required inpatient psychiatric care and another 5% sought help from outpatient mental health services
- LBD creates a very challenging set of caregiving demands from early in the disease and it can burn caregivers out early due to its unpredictability. But beyond that, the low public awareness of LBD brings its own emotional toll on families, who have to explain what LBD is to every person they meet, including many of their healthcare providers. Look for warning signs Withdrawal from family and friends Feeling blue or increasingly sad Changes in sleep patterns Changes in appetite and/or weight Getting sick more often Emotional and physical exhaustion Increased irritability
- While the subjective burden they experience is high, their use of community resources is rather low. 38% reported they received no help at all and only 30% were satisfied with the help they were getting. Less than half used adult day programs, transportation or meal services. Only 29% used paid care in the home and 21% used adult day services. Less than a 1/3rd attend support groups and only A new study by Steve Zarit and colleagues suggests that dementia caregivers who regular use adult day care services at least twice a week actually see an increase in a beneficial stress hormone. This hormone is known to be protective against the physiological damaging effects of stressor exposure and may reduce risks of illness. Using adult day services may help reduce depletion of this beneficial stress hormone (DHEA-S) and allow the body to mount a protective and restorative response to the physiological demands of caregiving.
- Caregiving is more than just the physical care of a person with LBD. It’s good to help them find the best quality of life possible. Stay focused on them as an individual with emotional and spiritual needs, not just medical needs. Remember to keep your sense of humor and understand that there are going to be limitations that have to be accepted. Because people with LBD have a reduced level of attention and alertness, keep the stimulation low to moderate. It will help them not get exhausted from the stimuli. Take instructions one step at a time. As the disease progresses, offer them a choice of 2 things and then later, simple yes or no questions. Keep their daily routine relatively stable. Their memory may be relatively good, compared to a person with Alzheimer’s. Knowing what to expect can help to reduce anxiety and resistance to care. Delusions and hallucinations are common in LBD, so listen to what they are saying and respond to the emotions they are expressing. You can provide a lot of emotional comfort without having to tell them they are wrong or having a hallucination. Don’t forget to try redirecting them to other topics or activities as well. LBD is never the same two days in a row. Flexibility is the caregiver’s best friend. Any sudden changes are likely not progression of the disease, but signs of an illness, pain or exhaustion.
- LBD is the most misdiagnosed form of dementia. If you or a family suspect LBD, it’s important to seek a second opinion. LBD expertise can often be found at dementia clinics at university hospitals. Encourage family caregivers to become knowledgeable about LBD symptoms and treatments. They are often the front line protection between the person with LBD and traditional antipsychotics, especially in a hospital setting. Tell LBD families they can connect with others affected by LBD through support groups or online communities. Because LBD is so highly under-diagnosed, they may not personally know anyone else who has been touched by LBD. They find a tremendous amount of solace and support when they realize they are not alone. Remember that LBD is a heavy load for family caregivers. Caregivers should be viewed as your second patient and should be screened for caregiver burnout. They need someone else to help them objectively look at their options. I’ll say this from personal experience, as my father had LBD. Many times caregivers think there is only one good caregiving choice, when the truth is that there are several alternatives that we simply refuse to consider for our own personal reasons. But when we get desperate, those alternatives start to look pretty good. It bears saying that if a caregiver is so exhausted that they are sick, depressed, or, and it’s sad to say, but it does happen, suicidal, they cannot do anything for the person they love and are providing care for. Use these tips to help them find ways to balance their caregiving responsibilities with their own physical, emotional and spiritual needs.
- Help is available from the Lewy Body Dementia Association. Our Family Services are designed to help alleviate those feelings of isolation, by putting caregivers directly in touch with other caregivers. Many of our volunteers were former LBD caregivers, so they really understand.
- We have a many educational resources on our website, but I’d like to highlight two of our newest ones. The Diagnostic Symptoms Checklist is a free resource that can be downloaded and printed by families and professionals. It’s a list of key LBD symptoms that are part of the diagnostic process. There are lots of other symptoms, but they are more supportive and are not diagnostic in and of themselves. We also created a comprehensive symptom checklist to make it easier to identify, report and hopefully treat symptoms related to LBD. This new booklet from the National Institute on Aging was a collaboration between LBDA, the University of California, San Diego, and the National Institutes of Health. You can read the booklet online at LBDA’s website. Print copies can be ordered for free from NIA’s the Alzheimer’s Disease Education and Referral Center (ADEAR).
- We encourage you to learn more about LBD and to stay up to date on the latest clinical and scientific news by subscribing to the LBDA’s e-newsletter, the Lewy Body Digest. Click on this graphic on our homepage or visit the URL listed here.