Diagnosing Lewy Body Dementia
It’s important to know which type of Lewy body dementia (LBD) a person has, both to tailor treatment to particular symptoms and to understand how the disease will likely progress. Clinicians and researchers use the “1-year rule” to diagnose which form of LBD a person has. If cognitive symptoms appear within a year of movement problems, the diagnosis is dementia with Lewy bodies. If cognitive problems develop more than a year after the onset of movement problems, the diagnosis is Parkinson’s disease dementia.
Regardless of the initial symptoms, over time people with LBD often develop similar symptoms due to the presence of Lewy bodies in the brain. But there are some differences. For example, dementia with Lewy bodies may progress more quickly than Parkinson’s disease dementia.
Dementia with Lewy bodies is often hard to diagnose because its early symptoms may resemble those of Alzheimer’s, Parkinson’s disease, or a psychiatric illness. As a result, it is often misdiagnosed or missed altogether. As additional symptoms appear, it is often easier to make an accurate diagnosis.
The good news is that doctors are increasingly able to diagnose LBD earlier and more accurately as researchers identify which symptoms help distinguish it from similar disorders.
Difficult as it is, getting an accurate diagnosis of LBD early on is important so that a person:
- Gets the right medical care and avoids potentially harmful treatment
- Has time to plan medical care and arrange legal and financial affairs
- Can build a support team to stay independent and maximize quality of life
While a diagnosis of LBD can be distressing, some people are relieved to know the reason for their troubling symptoms. It is important to allow time to adjust to the news. Talking about a diagnosis can help shift the focus toward developing a care plan.
Read more about diagnosing dementia, including tests and who can make a diagnosis.
Researchers are studying ways to diagnose LBD more accurately in the living brain. Certain types of neuroimaging—positron emission tomography and single-photon emission computed tomography—have shown promise in detecting differences between dementia with Lewy bodies and Alzheimer’s disease. These methods may help diagnose certain features of the disorder, such as dopamine deficiencies. Researchers are also investigating the use of lumbar puncture (spinal tap) to measure proteins in cerebrospinal fluid that might distinguish dementia with Lewy bodies from Alzheimer’s disease and other brain disorders.
Talking to both patients and caregivers helps doctors make a diagnosis.
It is important for the patient and a close family member or friend to tell the doctor about any symptoms involving thinking, movement, sleep, behavior, or mood. Also, discuss other health problems and provide a list of all current medications, including prescriptions, over-the-counter drugs, vitamins, and supplements. Certain medications can worsen LBD symptoms.
Caregivers may be reluctant to talk about a person’s symptoms when that person is present. Ask to speak with the doctor privately if necessary. The more information a doctor has, the more accurate a diagnosis can be.
For More Information About Diagnosing LBD
NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center
The National Institute on Aging’s ADEAR Center offers information and free print publications about Alzheimer’s disease and related dementias for families, caregivers, and health professionals. ADEAR Center staff answer telephone, email, and written requests and make referrals to local and national resources.
Lewy Body Dementia Association
1-800-539-9767 (toll-free LBD Caregiver Link)
Updated: July 25, 2017