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  • Karen McPhail, RN, MSN, CDP

Lewy Body Dementia - Frequently Missed and Under Diagnosed

Happy Friday! As usual, I am blogging about what I have experienced throughout my week! Lately I have had several new patients with undiagnosed Lewy Body Dementia (LBD). I am finding that LBD is sadly often misdiagnosed, missed, or mismanaged in the healthcare community. Many health care providers sadly do not even understand the disease process or proper care considerations. Education is key in this area and why I try to provide frequent community education programs for clinicians and caregivers.

Proper evaluation, treatment, and clinical interventions are key for all dementias including LBD. In addition to cognitive evaluation and testing which I routinely perform as a first step, a simple Lewy body checklist can be very helpful, but is often not used. Obtaining this information along with a detailed history / chronology, imaging and other diagnostics (to rule out other disease processes) is vital when symptoms are noted. Be mindful when hiring individuals who claim to do comprehensive assessments including cognitive areas. Ensure that they are an aging life care professional and / or have clinical credentials; not all assessments are the same sadly. Do your homework and study professional bios before hiring! Eldementals provides only RN care management and RN cognitive evaluations. Those completing cognitive evaluations are not only masters prepared clinicians, but also have extensive training, licensing, and experience in using the BCAT system and other cognitive evaluation tools.

One of my clients from this week was being managed by their primary care physician, living at home, and had been misdiagnosed as simply having Alzheimer's disease. Proper cognitive evaluation had not been done sadly and behavioral aspects were beginning to emerge and interfere with aspects of daily living and safety.

It is important for clinicians to be able to distinguish between Alzheimer's and Lewy Body Dementia for several important reasons. Individuals with documented LBD can be linked to disability sooner and need to be managed carefully in terms of their clinical care and medications. Families need to be given time to plan and put affairs in order as LBD often times moves faster than other dementias. Finally, those with LBD are sensitive to medications and some common medications should be avoided as they can cause behavioral issues, expedite symptoms, and disease progression. Those with LBD should be treated conservatively in terms of medications - a low and slow approach should always be taken with careful observation following any medication changes.

General Drugs to Avoid with LBD:

  • Anticholinergics - Can worsen cognitive impairment, cause confusion, and hallucinations.

  • Benzodiazepines - Use with caution as high risk of sedation, increasing risk of injury, falls, paradoxical agitation.

  • Over-The-Counter (OTC) - Especially herbal remedies, sleep and bladder-control. Can cause agitation.

  • Inhaled anesthetics - Careful monitoring and use, lowest possible dose for surgical procedure to minimize risk for delirium.

  • Typical antipsychotics should not be used!

Second generation or atypical (newer) antipsychotics may be helpful!

LBD is a progressive brain disorder with an average life span of 5-7 years. The cause of LBD is unknown at this time. Often people are surprised to hear that it is one of the most common dementia's being 2nd to Alzheimer’s! It is caused by the accumulation of Lewy bodies bodies- abnormal deposits of a protein (alpha-synuclein) accumulate in brain. This disease effects behavior, cognition, and movement.

LBD Involves two primary diagnosis:

- Dementia with Lewy bodies (DLB)

- Parkinson's disease dementia (PDD) - 78% of Parkinson's disease patients will eventually develop dementia

LBD is therefore two related conditions with key differences. In Dementia with Lewy bodies (DLB) the cognitive symptoms are usually noted first or at same time as motor. While, with Parkinson’s Disease Dementia movement symptoms are pronounced in the early stages, with cognitive symptoms developing years later.

Many researchers and clinicians think of PDD and DLB as being on a continuum of a similar disease process rather than as two distinct entities

Early signs differ, but the same biologic brain changes are noted with similar symptoms overtime.

Both PDD and DLB involve disturbances of cognition, behavior, sleep, movement and autonomic functioning

Some of the signs of LBD are sleep disturbances and acting out dreams, visual hallucinations which may be one of the early symptoms, motor issues including falls and shuffling, and varying confusion and alertness.

If you or your family member are experiencing these symptoms feel free to reach out via our contacts tab as we are here to help and provide not only clinical guidance, but support long term.

Search our past and look for future posts on FTD, Vascular Dementia and more! If you need guidance on a specific area contact us!


#ftd #Eldementals #caremanagement #dementia #rncaremanagement

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