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GET THE FACTS ABOUT LEWY
Introduce those you care about to the facts about Lewy body dementia.
FACT: Lewy body dementia (LBD) is the most misdiagnosed form of dementia.
FACT: LBD is the second most common cause of progressive dementia behind Alzheimer’s disease.
FACT: LBD affects approximately 1.4 million Americans, most often after the age of 50.
FACT: LBD is NOT usually hereditary.
WHAT IS LEWY BODY DEMENTIA?
Lewy body dementia (LBD) is a progressive brain disorder in which Lewy bodies (abnormal deposits of a protein called alpha-synuclein) build up in areas of the brain that regulate behavior, cognition, and movement.
A complex disease, LBD can present with a range of symptoms including problems with thinking, memory, moving, sleep and/or changes in behavior, to name a few of the physical, cognitive, and behavioral symptoms.
LBD also affects autonomic body functions, such as blood pressure control, temperature regulation, and bladder and bowel function. Progressively debilitating, LBD can also cause people to experience visual hallucinations or act out their dreams.
WHAT IS THE DIFFERENCE BETWEEN LBD AND DEMENTIA WITH LEWY BODIES?
LBD is an umbrella term for two closely related clinical diagnoses: Parkinson’s disease dementia and dementia with Lewy bodies (DLB).
WHAT CAUSES LBD?
The causes of LBD are not yet well understood, but research is ongoing in this area. There are probably multiple factors involved, including genetic and environmental risk factors that combine with natural aging processes to make someone susceptible to LBD.
WHAT ARE THE SIGNS AND SYMPTOMS OF LBD?
This condition impairs thinking, such as memory, executive function (planning, processing information), or the ability to understand visual information. Patients with LBD may have fluctuations in attention or alertness; problems with movement including tremors, stiffness, slowness and difficulty walking; hallucinations; and alterations in sleep and behavior.
EARLY DIFFERENTIATING SYMPTOMS
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HOW IS LBD DIAGNOSED AND WHAT TYPE OF DOCTOR DO I NEED TO VISIT?
Doctors diagnose LBD based on the patient’s history, examination, and potentially other blood tests or brain scans to exclude other causes of dementia, movement disorders, or behavioral problems. There are no medical tests that can diagnose LBD with absolute certainty during life, so when a doctor suspects a person has LBD based on their symptoms, they are diagnosed with “probable LBD.” The only way to be certain of the diagnosis is with an autopsy.
Primary care practitioners should be told about any cognitive, emotional, movement, or other physical changes. If LBD is suspected, a neurologist is recommended for diagnostic evaluation and management. Neurologists have the specialized knowledge necessary to diagnose specific types of dementia or movement disorders, as do psychiatrists and geriatric psychiatrists.
Some neurologists have advanced or specialty training in the care of patients with dementia and/or parkinsonian movement disorders. Neuropsychologists also play an important role in helping to diagnose LBD and testing memory and cognitive functions. Geriatricians, who specialize in treating older adults, are also usually familiar with the different forms of dementia.
If you have access to a hospital affiliated with a medical school, the hospital may have a clinic specializing in the diagnosis and treatment of dementia
and/or movement disorders. A diagnosis by specialists very familiar with DLB may be accurate up to 90% of the time.
IS THERE A CURE FOR LBD?
Currently, there is no cure for this disease. Practitioners prescribe medications to reduce symptoms. Research is continuing so that better medications can be developed and a cure can be found.
WHAT RESOURCES ARE AVAILABLE TO HELP PRACTITIONERS IN THE HEALTHCARE COMMUNITY RECOGNIZE, DIAGNOSE, AND TREAT PATIENTS WITH LBD?
The Lewy Body Dementia Association (LBDA) has developed a Diagnostic Symptoms Checklist
to help patients, caregivers, and healthcare providers quickly and easily identify symptoms that are required for the diagnosis of dementia with Lewy bodies.This free checklist can be downloaded and printed for unlimited use by both medical practitioners and individuals who want to discuss LBD with their doctor:
WHAT SUPPORT IS AVAILABLE FOR PEOPLE WITH LBD AND THOSE WHO MAY HAVE IT?
If you suspect that you or someone you love is having symptoms of LBD, call your doctor right away. Don’t forget to fill out the patient’s section of LBDA’s diagnostic symptoms checklist and take it with you to your doctor’s appointment. An early diagnosis provides the person with dementia an opportunity to share their wishes about decisions that will need to be made in their future. It also allows practitioners to give proper treatment that can extend independence and improve quality of life.
ABOUT THE LEWY BODY DEMENTIA ASSOCIATION
The Lewy Body Dementia Association is a 501(c)(3) national nonprofit health organization dedicated to raising awareness of Lewy body dementia, supporting people with LBD, their families and caregivers, and promoting scientific advances. Through outreach, education and research, LBDA supports all those affected by Lewy body dementia.
WE’RE HERE TO HELP
Visit the LBDA website at lbda.org to learn more about LBD, find resources to get the help you need, and connect with the LBDA community.
LBD CAREGIVER LINK
You are not alone. Experienced LBD caregiver volunteers are available to listen compassionately and confidentially during life’s challenging times. Call toll-free 800.539.9767 or email firstname.lastname@example.org
LOCAL LBD SUPPORT GROUPS
Support groups provide the opportunity to educate, encourage, and connect to a community and each other. Find a local LBD support group near you or join one online by visiting lbda.org.
LBD SOCIAL NETWORKING
Connect with the LBDA and other LBD families to get support and help us raise awareness of LBD. Visit lbda.org to connect with us on Facebook, Twitter, and LinkedIn.
We know it can be difficult for caregivers to attend support groups in person. That’s why we created the LBDA forums, where you can meet and share
your experiences and insights with caregivers and people affected by LBD. Join today by sending an email to the Forums