1. Lewy body dementia: When it isn’t Alzheimer’s (Speaker’s name here)

2. What we’ll cover What is LBD? How is it different from other conditions like Alzheimer’s and Parkinson’s disease? How is LBD diagnosed? What are potential treatments? What you can do?

3. Dementia is… Not one disease A significant decline in one’s ability to function in everyday activities Dementia affects: –Memory –Language –Judgment –Executive function –Visuospatial skills –Attention

4. Dementia is not always Alzheimer’s disease Reversible and treatable causes of dementia –Medical conditions like infection and thyroid disease –Vitamin deficiency –Drug reactions –Brain tumor –Subdural hematoma –Hydrocephalus Common causes of irreversible dementia –Alzheimer’s disease –Lewy body dementias –Vascular dementias –Frontotemporal dementia

5. What is Lewy body dementia? Lewy body dementia (LBD) is: –A brain disease affecting thinking, movement, behavior and sleep –Progressive and incurable –Biologically related to Parkinson’s disease. “Lewy body dementias” include two diagnoses: –Dementia with Lewy bodies –Parkinson’s disease dementia

6. Meet Mildred “My mother lived with LBD for about 10 years before passing away in 1999. I wish the Lewy Body Dementia Association had been around back then.” Jason, Mildred’s son Mildred’s early symptoms Moving slowly Shuffling walk Reduced manual dexterity Problems playing familiar card games Problems making familiar meals Mildred was diagnosed with Parkinson’s disease and later developed dementia.

7. What are the symptoms of LBD? Central: –Dementia with severe executive and visuospatial dysfunction early Core: –Fluctuating cognition (variations in attention and alertness) –Recurrent visual hallucinations –Parkinson’s-like symptoms, especially rigidity and slowness Suggestive: –REM sleep behavior disorder (acting out dreams, sometimes violently), –Severe sensitivity to antipsychotic medications –Abnormal result on dopamine brain scans Other symptoms: –Repeated falls, fainting, transient unexplained loss of consciousness, severe autonomic dysfunction (e.g. orthostatic hypotension, urinary incontinence, constipation), hallucinations of hearing, touch, smell, delusions, misperceptions, depression

8. Challenging behaviors and mood disorders in LBD Hallucinations Delusions Illusions Capgras Syndrome Apathy Depression Anxiety

9. Meet Bruce “Thanks to LBDA, I was able to connect with so many other LBD families. I would have been so lost without LBDA’s help.” Bruce’s daughter, Angela Bruce’s early symptoms: Mild confusion Vivid, frightening nightmares that he acted out in his sleep Bruce was diagnosed with mild cognitive impairment and REM sleep behavior disorder. Two years later he progressed to dementia and was diagnosed with LBD.

10. How is LBD related to Parkinson’s? Similar changes (Lewy bodies) in the brain, but in different locations Involves the same proteins –alpha-synuclein –ubiquitin Some symptoms are similar Source: www.genome.gov

11. How is Alzheimer’s different from LBD? Different changes in the brain –Plaques and tangles form Different proteins involved –Beta amyloid and tau Courtesy of Alzheimer's Disease Research, a program of the American Health Assistance Foundation. © 2012 www.ahaf.org/alzheimers Alzheimer’s has different presenting symptoms –Progressive decline in memory, thinking and behavior. –No changes in movement or sleep disorders early in disease, –Hallucinations uncommon early in Alzheimer’s –No neuroleptic medication sensitivities

12. LBD is NOT a rare disease Alzheimer’s = 5 million LBD = 1.3 million HIV = 1.2 million Parkinson’s = 1 million

13. Who can diagnose LBD? Neurologists Geriatric psychiatrists Geriatricians Neuropsychologists can provide supportive data Who may not be familiar with LBD yet? –Primary care physicians –Hospital staff (outside of neurology or psychiatry) –Emergency medical services –General public

14. Early diagnosis is critical Getting an accurate diagnosis isn’t easy, but... It’s essential! Early legal and financial planning Driving and safety issues Input into long term care preferences Early and aggressive treatment Minimize risk of medication side effects

15. How is LBD diagnosed? Standard: –Detailed medical history –Physical exam –Neurological exam –Blood tests –Brief cognitive test –Brain scans Suggested: –Referral for detailed neuropsychological tests. –SPECT/PET brain scan, like DAT scan

16. How is LBD treated? Pharmacological treatment Medications used in Alzheimer’s, Parkinson’s, sleep and psychiatric/mood disorders Severe medication sensitivities make treatment of LBD a balancing act.

17. Commonly-used medications Cognition and memory –rivastigmine (Exelon), donepezil (Aricept), galantamine (Razadyne), memantine (Namenda) Parkinsonism –carbidopa/levodopa (Sinemet) REM behavior disorder –clonazepam (Klonopin), melatonin Excessive daytime sleepiness –stimulant-like medications such as modafanil (Provigil) Hallucinations or delusions (WARNING: severe medication sensitivities) –medications above for cognition –atypical antipsychotics such as quetiapine (Seroquel) or clozapine (Clozaril) –AVOID TRADITIONAL ANTIPSYCHOTICS such as haloperidol (Haldol) Depression and anxiety –Antidepressants in the SSRI or SNRI class, such as citalopram (Celexa) or venlafaxine (Effexor)

18. Non-pharmacological treatments Physical therapy Occupational therapy Speech therapy Counseling There is no way to prevent, stop or cure LBD.

19. What is the prognosis? This is a disease of years, not months Survival range may vary greatly –General wellness –Other medical conditions –Aggressive and appropriate LBD treatment Average life expectancy is 5-7 years after diagnosis Caregiver burden is possibly higher than in Alzheimer’s

20. Meet Betty Betty’s early symptoms: –Minimal tremor –Cramped handwriting –Shuffling gait –Stooped over Betty was diagnosed with Parkinson’s disease Later, she developed: –Hallucinations –Visual-spatial problems –Confusion Betty was then diagnosed with Parkinson’s disease dementia Betty and her daughter, Angela Herron, President of LBDA’s Board of Directors

21. Help is available at LBDA! Family Services: –LBD Caregiver Link (800.539.9767) –Caregiver support groups –An active virtual community Education and Awareness –LBD Awareness Movement – October is LBD Awareness Month –Free publications, for families and professionals –Lewy Body Digest (e-newsletter) –Webinars and website: www.lbda.orgwww.lbda.org Research –Research grants and scientific conferences –Studies of the impact of LBD on caregivers

22. You can help too! Pass it forward - tell someone else about LBD Volunteer with LBDA Make a donation – every dollar helps

23. Increasing Knowledge Sharing Experience Building Hope Need Support? Contact Us! Lewy Body Dementia Association www.lbda.org Or find us on Facebook, Twitter and LinkedIn LBD Caregiver Link (800) LEWY SOS (800) 539-9767