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  • Kristina Walker

Series: What's underneath the Dementia Umbrella?

Part 2: Lewy Body Dementia Long-Term Support and Care

In this series we will take an in-depth look at the various types of dementia and how to improve care in a long-term care setting. There are several lesser known dementias affecting our seniors. As part of their care team we need to educate ourselves on how to better understand and meet the needs of those living with these dementias.

Lewy Body Dementia: Support and Care in a Long-Term Care Setting

People with Lewy Body Dementia (LBD) experience a progressive decline in their memory and ability to think, similar to Alzheimer's disease. However, unlike a person with Alzheimer’s, the cognitive ability or alertness of a person with LBD is more likely to fluctuate from one moment to the next. Visual hallucinations (seeing things that aren't there) and delusions (believing something that is not true) occur in 80 percent of those living with LBD.

Caring for someone with this disease can be very challenging. Behavioral changes often cause caregivers to look to medications to control symptoms, but people living with LBD are more sensitive to medications, even those available over the counter. There are no medications currently approved by the FDA for this type of dementia. Antipsychotics are strongly discouraged and should be avoided, especially older generation antipsychotics like Haldol, because they impact motor functioning and make the physical symptoms of LBD worse. Antidepressants are usually tolerated well by those with LBD and can help alleviate emotional discomfort.

It is important to provide a safe environment for people living with LBD due to the movement problems they often experience. While some patients may not have significant movement problems for several years, others may experience them early on. At first signs of such problems may be very mild, such as a change in handwriting, and thus overlooked. The parkinsonism seen early in Parkinson’s disease can also develop later on with Lewy bodies.

The best way to manage the disease is by creating a safe environment and helping to decrease the occurrences of hallucinations/delusions.

Environmental/Physical adjustments

  • Smaller or one-on-one activities are best.

  • Reduce clutter, extraneous noise or other confusing aspects of an environment.

  • Avoid larger dining room settings. Smaller, private dining or eating in their apartment is best.

  • Orthostatic hypotension, constipation, urinary symptoms, dehydration, etc. can be very disturbing to those with LBD and need to be treated quickly.


  • Don’t argue. If your resident is experiencing a hallucination/delusion it is very real to them. Something environmental may be triggering it. The best solution is to move to a new setting.

  • Don’t quiz them.

  • Understand that they are often experiencing a mixture of emotions including confusion, fear, depression, anger, grief and uncertainty.

  • Keep a routine as much as possible.

  • Be patient and flexible.

Sleep factors (People with LBD can experience nighttime restlessness. They may also have REM behavior disorder in which they physically act out their dreams.)

  • Discourage daytime napping.

  • Limit caffeine.

  • Establish a calming nighttime routine.

  • Encourage exercise.

  • Avoid fats and refined sugars several hours before bedtime.

  • Avoid murder mystery and graphic/sensational books/TV programs.

Exercise Benefits

  • Improves strength, endurance and cardiovascular health.

  • Reduces the risk of falls and fractures.

  • Improves energy, circulation, stamina and mood.

  • Improves sleep.

  • Promotes regular bowel and bladder function.

  • Helps maintain flexibility and balance, reducing the risk of serious injury from falls.

  • Helps sustain the ability to perform self-care activities, such as grooming and dressing.

  • Imparts a sense of belonging, purpose and contributions

  • Creates a calming effect through familiar activity.

As caregivers, we are empowered to help ease the burden on our residents and their families by being proactive in creating an environment in which our residents can thrive.

In our next newsletter, we will continue our series on dementia. In the meantime, you can learn more about Lewy Body Dementia and how to care for people who have it from these free resources:

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