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.
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.
The way in which LBD progresses varies from person to person.
Some people experience a gradual worsening of LBD symptoms, while others experience periods of more rapid decline.
Often LBD cognitive and behavioral symptoms worsen temporarily, because of pain, infection or other medical problem, but may improve once the problem is resolved. And while some LBD treatments may lesson certain symptoms for a period, there is no cure for LBD.
The average duration of LBD (from the time of diagnosis to death) is 5 to 7 years and final stage Lewy Body Dementia.
The initial symptoms of LBD can vary by the individual, and may include either visual hallucinations, acting out dreams or other sleep disturbances, cognitive impairment, or parkinsonian motor signs (these signs include tremor, rigidity, and problems with balance and movement).
In general, the symptoms of LBD get worse as the disease progresses over a period of years, but there may be times when symptoms suddenly become much worse or mental abilities may fluctuate unpredictably.
Medications that have anticholinergic or antipsychotic properties should be used cautiously, if at all, and may cause sudden and sometimes severe deterioration.
In the later stages of the disease, people with LBD are not able to do the basic self-care activities such as bathing, dressing, or toileting and often have increasing difficulties with movement that can affect walking, talking, and swallowing.
These more severe problems also make it more difficult for the person with LBD to communicate or participate in activities and may cause weight loss, aspiration pneumonia, or falls that result in broken hips or wrists.
When a person with LBD needs constant care to meet their basic needs (like feeding and toileting) and their quality of life is greatly reduced, it is an appropriate time to consider a hospice program.