Learning about Lewy Body dementia

In the past few days I have been asked if the doctors gave us any idea about life expectancy for Terry now that he has been diagnosed.  This is not a question that I thought about but it did catch me off guard when asked.  I only thought about how his mind would slip away and the time when his drivers liscense would have to be taken away, when he would need me to be home full time, when I would have to take care of his personal hygiene issues, etc.  I did not think about the end of his life.  How awful to think about such a thing, it makes me feel a physical pain in my heart.
I did google the question and this is what I found :
Lewy body dementia is very difficult to treat. Unfortunately, people with Lewy body dementia often have severe adverse reactions to antipsychotic medications, which are otherwise helpful in treating symptoms such as delusions and hallucinations. Therefore, the use of antipsychotic medications for the treatment of Lewy body dementia is not generally recommended.

No drugs have been approved by the FDA to specifically treat Lewy body dementia, but Alzheimer's treatments have been shown to be helpful. In fact, some researchers say that those with Lewy body dementia respond better tocholinesterase inhibitors, such as Aricept, Exelon, and Razadyne, than those with any other type of dementia.

• Profile: Aricept (donepezil)
• Profile: Exelon (rivastigmine)
• Profile: Razadyne (galantamine)

Because individuals with Lewy body dementia often have Parkinson's-like problems, medications for Parkinson's disease can help treat related symptoms. However, they can also increaseconfusion, delusions, and hallucinations.

Behavior management strategies are also useful for managing the difficult behavioral symptoms of Lewy body dementia. Reducing caffeine intake, increasing physical activity during the day, and providing relaxing activities in the evening can improve sleep patterns and decrease violent outbursts during the night.

Prognosis for Lewy Body Dementia

Unfortunately, there is currently no cure for Lewy body dementia. One study found that the average life expectancy for a person with Lewy body dementia after the symptoms first appear was 7 years. However, individuals with Lewy body dementia have lived anywhere between 2 and 20 years, depending on age, the severity of symptoms, and coexisting medical conditions.

It is the coexisting medical conditions and how they react to the disease and the treatment that are the unknown in Terry's situation.  The drug therapy that he will start soon is known to cause damage to lungs and kidneys.  With the emphysema and CKD that he has they have started him on half of the lowest dosage for one month.  The drug will not cure the dementia but should make the violent outbursts and memory loss not so noticeable.  

More to come as I continue to research.  right now he is not asking any questions and seems fine with the diagnosis.  I pray he can stay in his contented state.

Diagnosis

The trip to the VA this morning was informative.  We met with two doctors and they reviewed the tests done in the spring.  They then performed some new cognitive tests and motor skills tests.  The findings are that Terry has Lewy body disease.  I learned today that it is OK for him to sit and watch his game shows, that is what makes him happy.  He has difficulty handling much more than that so leave him to it.  This will be  long stuggle and we will have to be patient.  Patience is not a virtue I have but I shall try.  I also learned that it is OK for me to live my life, I will carry on and do for him what I can but I will live MY life. 

Symptoms of Lewy body disease

People with Lewy body disease have cognitive problems (problems with thinking, memory, language, etc.) similar to those that occur in Alzheimer's disease. Therefore, it can be hard to distinguish the two. Some doctors think there are three distinguishing features and the presence of two of them makes the diagnosis of Lewy body disease probable:

• Motor problems typical of Parkinson's disease but usually not so severe as to warrant a diagnosis of Parkinson's. Of these problems, an impairment in walking (a shuffling gait) might be the most common one. Also common would be muscle stiffness and a tendency to fall. Tremor would be less common.
• Fluctuations in cognitive function with varying levels of alertness and attention. Periods of being alert and coherent alternate with periods of being confused and unresponsive to questions.
• Visual hallucinations, usually occurring early on. Delusions may be common too.

It's possible that people with Lewy body disease are better able to form new memories than those with Alzheimer's disease. Compared with Alzheimer's, Lewy body disease may affect speed of thinking, attention and concentration, and visual-spatial abilities more severely than memory and language. Depression may be a typical symptom too.

Treatment

Right now, doctors prescribe drugs to treat four major features found in Lewy body disease (also see the medication section of our Information page):

• Cognitive problems. Usually, a drug like Aricept is prescribed. This is the same drug that is commonly prescribed for Alzheimer's disease. In some people, it seems to slow the progression of the disease.
• Motor problems. Levodopa/carbidopa (Sinemet) is frequently prescribed to deal with the motor problems. This medication can worsen hallucinations, though.
• Hallucinations. An antipsychotic medication, such as Zyprexa, might be prescribed. This kind of medication can worsen motor problems, though. Also note the FDA warning.