Lewy body dementia, also known as Lewy body disease, or LBD, is a multi-system disease with a progressive dementia at its core. It is often lumped together with other forms of dementia, such as Alzheimer’s; however, while there are some similarities, the conditions have differences in causes, symptoms, and treatments.
Caregivers who are tending to those with Lewy body dementia should learn as much about the disease as they can. The greater your knowledge, the better you will be able to provide care.
Clearly, getting the best medical care from an experienced, qualified doctor is essential. Sometimes, however, even when your loved one is under the care of an expert, situations may arise (e.g., an unplanned visit to an emergency room) in which a less experienced doctor may temporarily be called upon to make a medical decision. It is especially important in these situations that you, as a caregiver, are able to assist with your own knowledge and experience.
Every patient is different and so each patient’s treatment may differ, but cholinesterase inhibitors are the most common medication used to treat cognitive issues in those who suffer from Lewy body dementia. People with Lewy body dementia tend to respond to these drugs better than do people with Alzheimer’s.
As with any medication, there can be side effects. The most common side effect of cholinesterase inhibitors is gastrointestinal disturbances; some recent studies indicate that these drugs may also increase the risk of fainting spells. It’s important to keep a close eye on your loved one to report any possible side effects to your doctor so that he or she can determine whether these effects are related to drugs or to some other source.
Hallucinations are often associated with Lewy body dementia; sometimes these can be very vivid and in some cases can cause patients to become difficult. Cholinesterase inhibitors often help with hallucinations; however, treating especially strong hallucinations can be challenging.
Alzheimer’s, antipsychotics (also called neuroleptics) are often used to treat severe hallucinations that bring about disruptive behavior. Lewy body dementia is not Alzheimer’s, and antipsychotics should be used very, very conservatively if at all. These drugs affect the brains of those with Lewy body dementia in very different ways than they affect the brains of those with Alzheimer’s, and can potentially cause significant side effects; in some instances, antipsychotics administered to those with Lewy body disease may result in something called neuroleptic malignant syndrome, which can be fatal.
If a doctor suggests using an antipsychotic for a person with Lewy body dementia, question him or her about this to make sure that this is really necessary. If you are not speaking to your loved one’s regular doctor, make sure that the regular doctor is consulted before you go ahead with this plan of action. Also insist that your loved one be carefully monitored for any sign of possible side effects.
Being a caregiver requires special skills. One of these skills is not being afraid to speak up and question your medical care provider; it’s better to ask a doctor to spend a few minutes reviewing and discussing a decision involving medications than to ignore a decision that might not be the best one.