Prognosis and Disclosing the Diagnosis

The natural history of LBD, like Alzheimer’s disease, varies significantly among patients. Some progress slowly, others more quickly. The average duration of illness is 5-7 years after enough symptoms present for a diagnosis to be made. There are no formally defined stages of LBD like there are in Alzheimer’s disease. Efforts are underway to define the mild cognitive impairment stage of LBD, to allow for an earlier diagnosis.

Due to the low public awareness of LBD, most patients and families will first be introduced to it at the time of diagnosis. Information about LBD, referrals to community services, and discussions about advanced care planning for the future are important immediately after diagnosis. The Lewy Body Dementia Association accepts referrals and provides additional useful resource for patients and caregivers.

An accurate diagnosis of LBD is imperative for educating patients and caregivers about the unique clinical needs of LBD patients. Many patients and families have benefitted from locating physicians who are experienced in recognizing and managing the complexities of LBD.  

For additional information, read the expanded handout: Prognosis and Disclosing the Diagnosis