Lewy Body Dementia

Help for Families and Care Givers

Lewy Body Dementia (or Dementia with Lewy Bodies - DLB) is a rapidly progressing type of dementia that shares traits with both Alzheimer's Dementia and Parkinson's Disease. It is difficult to diagnose initially due to this fact.

This disease process is diagnosed by a full medical work up initially to rule out any other cause of these symptoms. Physician's usually conduct MRI's, CT Scans and even PET Scans to determine if there are Lewy Bodies present.

Once a full work up is done and if they find Lewy bodies, a definitive diagnosis can be made. Although it can be difficult to diagnose, there is a combination of symptoms that can indicate Lewy Body Dementia.

Dementia with Lewy Bodies is considered both a cortical and subcortical dementia that is progressive in nature and difficult to treat. It is irreversible with no known cure at this time, although some symptoms can be managed with medications and certain drugs used to treat Alzheimer's are often effective.

Signs of Lewy Body Dementia

Although this disease shares characteristics with both Alzheimer's and Parkinson's, there is a unique combination of symptoms that may indicate Dementia with Lewy Bodies (DLB).

The symptoms below, although individually are not unique to Lewy Body Dementia, in combination can certainly indicate that this may be the underlying disease process.

  • Visual Hallucinations: DLB is one of the few dementias that may actually present with the primary symptoms being visual hallucinations. These disturbances usually involve people and animals and can be quite disturbing. Depth perception is also compromised.
  • Frequent Falls: Due to the interference in motor function, these people often have frequent falls, some resulting in injuries and hospitalizations. Gait disturbances are common, along with stiffness and tremors, similar to those of a person suffering from Parkinson's.
  • Mental Function Loss: Decline in mental function is common but may not occur as a primary symptom. You may also notice a decreased attention span.
  • Sleep Disturbances: People with Lewy Body Dementia often suffer from severe insomnia and intense dreams that disturb sleep. They may "act out" their dreams, making it difficult, and even dangerous, for a spouse to continue to sleep in the same bed.
  • Acute Depression: It is not uncommon for these patients to have significant problems with depression. Depression is usually treatable with medication and this option should be discussed with their doctor.
  • Fluctuations is Cognition: Oftentimes, people with DLB will have periods of time where they are alert, followed by time periods of acute confusion. These fluctuations can happen several times in a day.
  • Autonomic Nervous System Problems: This can include changes in heart rate, blood pressure, difficulty swallowing and problems with temperature control, either excessive sweating or not sweating enough.

Caring for Someone with Lewy Body Dementia

If you look at the list of common symptoms above, you can see that this disease process can be exceedingly challenging for family and care givers, as well as the person suffering from the condition.

Prevention of complications should be your primary concern. Due to gait disturbances, depth perception issues and dizziness, preventing falls is a priority.

By looking at the causes individually, a fall prevention program can be instituted at home. When changing from a sitting (or lying) position to a standing position, have the person rest for 2-3 minutes in each position prior to walking.

Throw rugs should be removed and stairs blocked off. The use of chair alarms and bed alarms can be very effective in alerting you if your loved one is attempting to stand and walk, hopefully giving you time to get there before a fall occurs.

The risk of falls is so high in these people that every patient admitted to us with a diagnosis of Lewy Body Dementia was placed close to the nurse's station and always had fall alarms in place.

Although not a guarantee, persons with DLB were expected to fall, and appropriate interventions had to be in place.

Hallucinations are difficult to manage. Sometimes people are aware that they are having visual hallucination and sometimes not. Antipsychotic medications have been used successfully in some cases.

However, extreme caution should be used when treating patients with DLB with antipsychotic medications.

Research has shown that up to 50% of people with DLB experience severe neuroleptic sensitivity, including worsening and sometimes permanent Parkinson's symptoms, heavy sedation, increased confusion and agitation and in the worst cases, neuroleptic malignant syndrome symptoms, which can be fatal.

Not all treatment involves pharmaceutical medications. Other important areas of treatment involve speech therapy to help with language and swallowing, physical and occupational therapy to help with motor function, and family support.

What's Next?

Remember that this disease is progressive over months and years. In the initial stages, taking care of someone at home, although difficult, can be successful.

As the disease progresses, you will probably need more help at home. Due to agitation and combativeness, make sure you are safe and have help available quickly, like a neighbor or close friend, in case you find yourself in a situation where you need immediate assistance.

Lewy Body Dementia is the second most common type of dementia according to some experts. If you or your loved one is suffering from this disease, I highly recommend contacting your local Alzheimer's Association to find a specific support group for DLB where you can find the tender support of those that truly understand all you are going through.

If you can't find anything local, or in addition to a support group, the Lewy Body Dementia Organization provides abundant information, including the latest research and treatment modalities.

There is also a wonderful blog written by a physician diagnosed with DLB in his sixties. He openly shares what it feels like to go through this disease process.

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