Download Dementia is… - Lewy Body Dementia Association

Lewy body dementia:
When it isn’t Alzheimer’s
(Speaker’s name here)
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?
Dementia is…
• Not one disease
• A significant decline in one’s ability to function in everyday
activities
• Dementia affects:
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Memory
Language
Judgment
Executive function
Visuospatial skills
Attention
Dementia is not always
Alzheimer’s disease
• Reversible and treatable causes of dementia
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Medical conditions like infection and thyroid disease
Vitamin deficiency
Drug reactions
Brain tumor
Subdural hematoma
Hydrocephalus
• Common causes of irreversible dementia
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Alzheimer’s disease
Lewy body dementias
Vascular dementias
Frontotemporal dementia
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
Meet Mildred
Mildred’s early symptoms
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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.
“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
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
Challenging behaviors and mood
disorders in LBD
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Hallucinations
Delusions
Illusions
Capgras Syndrome
Apathy
Depression
Anxiety
Meet Bruce
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.
“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
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
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
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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
LBD is NOT a rare disease
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Alzheimer’s = 5 million
LBD = 1.3 million
HIV = 1.2 million
Parkinson’s = 1 million
Who can diagnose LBD?
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Neurologists
Geriatric psychiatrists
Geriatricians
Neuropsychologists can provide supportive data
• Who may not be familiar with LBD yet?
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Primary care physicians
Hospital staff (outside of neurology or psychiatry)
Emergency medical services
General public
Early diagnosis is critical
• Getting an accurate diagnosis isn’t easy, but...
It’s essential!
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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
How is LBD diagnosed?
• Standard:
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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
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.
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)
Non-pharmacological treatments
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Physical therapy
Occupational therapy
Speech therapy
Counseling
• There is no way to prevent, stop or cure LBD.
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
Meet Betty
• Betty’s early symptoms:
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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
Help is available at LBDA!
• Family Services:
– LBD Caregiver Link (800.539.9767)
– Caregiver support groups
– An active virtual community
• Education and Awareness
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LBD Awareness Movement – October is LBD Awareness Month
Free publications, for families and professionals
Lewy Body Digest (e-newsletter)
Webinars and website: www.lbda.org
• Research
– Research grants and scientific conferences
– Studies of the impact of LBD on caregivers
You can help too!
• Pass it forward - tell someone else about LBD
• Volunteer with LBDA
• Make a donation – every dollar helps
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
Increasing Knowledge Sharing Experience Building Hope