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LBDA Lewy Line

Those living with Lewy body dementia, care partners, and others can connect to the licensed professionals with LBDA Support Services through the LBDA Lewy Line or email.

Support Services (and its national network of volunteers) can:

  • Listen compassionately and confidentially to challenges and share their own personal experience with LBD, as appropriate
  • Offering emotional support
  • Refer families to additional LBDA programs and services, as appropriate for their needs – such as support groups and Lewy Buddies (Lewy Buddies are lived-experience volunteers who share their time and experience with families)
  • Help identify information and community resources concerning the diagnosis and care of a person with LBD

We are unable to provide direct referrals for residential facilities or home care agencies. If you are seeking information on care options in your local area, please call Eldercare Locator at 1-800-677-1116 or visit their website by clicking here.

LBDA Lewy Line – 800-539-9767

Please leave a message and we will return your call as soon as possible.

Please note that we are unable to return calls outside of the United States.

E–mail LBDA Support Services – support@lbda.org

For other questions and concerns, please see our Contact Us page.


Is It LBD or Something Else?

Sometimes early dementia symptoms can be vague, making the type of dementia hard to identify. It may take several years for enough symptoms to develop to point to a specific type of dementia. By learning about common forms of dementia, you can help your physician most quickly identify what type of dementia has developed.

  • Some types of dementia are reversible. They may be caused by an interaction of certain medications, a vitamin deficiency or a curable illness. If you are experiencing changes in your memory or cognitive abilities, please consult with a doctor to identify the cause and begin treatment immediately.
  • For many types of dementia, there are no known cures. These types of dementia mainly affect older adults, though some people are diagnosed with ‘early-onset dementia’ as young as their forties. Getting an early and accurate diagnosis along with appropriate treatment is very important since people with LBD often respond very differently to certain medications. 

Common Forms of Dementia

Alzheimer’s disease symptoms include a progressive loss of recent memory; problems with language, calculation, abstract thinking, and judgment; depression or anxiety; personality and behavioral changes; and disorientation to time and place. LBD is frequently misdiagnosed as Alzheimer’s disease, especially in the early stage. Over time, changes in movement, hallucinations or RBD can help distinguish LBD from Alzheimer’s disease.
Lewy body dementia (LBD) is an umbrella term for a form of dementia that has three common presentations.

  • Some individuals will start out with a change in thinking that may resemble Alzheimer’s disease, but over time two or more distinctive features become apparent leading to the diagnosis of ‘dementia with Lewy bodies’ (DLB). Symptoms that differentiate it from Alzheimer’s include unpredictable levels of cognitive ability, attention or alertness, changes in walking or movement, visual hallucinations, a sleep disorder called REM sleep behavior disorder, in which people physically act out their dreams, and severe sensitivity to medications for hallucinations. In some cases, the sleep disorder can precede dementia and other symptoms of LBD by decades.
  • Others will start out with a movement disorder leading to the diagnosis of Parkinson’s disease and later develop dementia and other symptoms common in DLB.
  • Lastly, a small group will first present with neuropsychiatric symptoms, which can include hallucinations, behavioral problems, and difficulty with complex mental activities, leading to an initial diagnosis of DLB.

Regardless of the initial symptom, over time all three presentations of LBD will develop very similar cognitive, physical, sleep, and behavioral features, all caused by the presence of Lewy bodies throughout the brain.
Vascular dementia is caused by a series of small strokes that deprive the brain of vital oxygen. Symptoms – such as disorientation in familiar locations; walking with rapid, shuffling steps; incontinence; laughing or crying inappropriately; difficulty following instructions; and problems handling money – may appear suddenly and worsen with additional strokes. High blood pressure, cigarette smoking, and high cholesterol are some of the risk factors for stroke that may be controlled to prevent vascular dementia.
Frontotemporal dementia (FTD) includes several disorders with a variety of symptoms. The most common signs of FTD include changes in personality and behavior, such as inappropriate or compulsive behavior, euphoria, apathy, the decline in personal hygiene, and a lack of awareness concerning these changes. Some forms of FTD involve language and speech symptoms or movement changes.

What Is Lewy Body Dementia?

Lewy body dementia (LBD) is the 2nd most common type of progressive dementia after Alzheimer’s disease.

LBD is not a rare disease. It affects more than a million people and their families in the United States alone. Because LBD symptoms may closely resemble other more commonly known disorders like Alzheimer’s disease, it is currently widely under-diagnosed.

LBD is an umbrella term for two related diagnoses:

  • A person with “dementia with Lewy bodies” will develop dementia and other LBD symptoms, one of which may be changes in movement like a tremor (parkinsonism).
  • In the other form of LBD, people will present first with changes in the movement leading to a Parkinson’s disease diagnosis; over time many will develop dementia years later. This is diagnosed as “Parkinson’s disease dementia”.

Over time, people with both diagnoses will develop very similar cognitive, physical, sleep, and behavioral symptoms. The earliest symptoms of dementia with Lewy bodies and Parkinson’s disease dementia are different, but both are due to the same underlying biological changes in the brain.

LBD is a multi-system disease and usually requires a comprehensive treatment approach with a collaborative team of physicians and other health care professionals like occupational, physical or speech therapists. Early diagnosis and treatment may extend your quality of life and independence. Many people with LBD enjoy significant lifestyle improvement with a comprehensive treatment approach, and some may even experience little change from year to year.