Caring For Someone With Lewy Body Dementia? Helpful Tips to Benefit Both Patient and Caregiver

Lewy Body Dementia (LBD) is a degenerative neurological condition that affects older adults and seniors. It is the second leading cause of dementia after Alzheimer’s Disease (AD) and has characteristics of both Alzheimer’s and Parkinson’s Disease Dementia (PDD), sometimes making it more challenging to diagnose.

Allcare Home Health Agency, Inc. has prepared some valuable information for caregivers and home healthcare providers to help them better understand the condition.
Lewy Body Dementia


LBD develops when proteins form in abnormal deposits in the brain, also called Lewy Bodies. These deposits interfere with proper brain chemistry and function. Similar structures form in the brain with PDD, however, treatment options traditionally used for AD and PDD can exacerbate the symptoms of LBD. Therefore, proper diagnosis is very important for accessing appropriate pharmacological and non-pharmacological treatments. Caregivers and Home Healthcare professionals should pay close attention to the symptoms they are observing to help form an effective care plan.

Often, signs of LBD are only discovered in post-mortem examinations, as with Robin Williams. He had previously been diagnosed with PDD, and the formation of Lewy Bodies found in his autopsy explained some of the symptoms he was experiencing.

Symptoms of LBD

Many of the early symptoms of LBD mimic other types of dementia, including cognitive impairment, difficulty with movement, and behavioral changes. Hallmarks of LBD include visual hallucinations, motor difficulties, and behavioral or sleep difficulties. These symptoms can appear as early as 50 years old, and an LBD diagnosis is more common for males than females. This disease usually presents with a very slow progression, making it easy to mistake it for AD or PDD. Complex visual hallucinations are usually unique to LBD.

Early symptoms might include migraine headaches due to the formation of Lewy Bodies, in addition to delirium and hallucinations. Doctors can perform a variety of tests, including brain scans, to properly diagnose LBD.


Since LBD has only been known for a couple of decades, pharmacological treatments are still being developed. We do know that medications like antipsychotics or other drugs traditionally used in dementia care can worsen LBD symptoms. Having a team of professionals working together, including a general practitioner, neurologist, physical and/or occupational therapist, psychiatrist or counselor, and even speech therapist is ideal. Home health caregivers can help with the continuity of care between doctor and therapy visits. The team can work together to create a treatment plan for each case. Individuals with LBD are sometimes more sensitive to pharmaceuticals and careful consideration should be paid to the risk/benefit profile for each case.

Non-pharmacological treatments that caregivers and home health care professionals can try, include giving simple instructions and allowing extra time to respond. Using cues, objects, and proximity can help them to orient themselves. Keeping consistency in caregivers, home health aides, familiar people, and routines can also be beneficial.

While there is no cure for Lewy Body Dementia, it has a slow progression. Accurate diagnosis, a strong care team, and appropriate medical and non-medical interventions can help keep patients with LBD in a positive state of mind and improve their quality of life. While a diagnosis of LBD may feel overwhelming, research is ongoing in the development of pharmaceuticals that can slow its progression.

If you have questions or would like to discuss how the home health caregivers at Allcare Home Health Agency, Inc. can help you and your loved one, please contact us. 

Lewy body dementia: What Robin Williams’ widow wants you to know | CNN

Robin Williams’ Suicide: What Is Lewy Body Dementia? | Live Science

Improving the identification of dementia with Lewy bodies in the context of an Alzheimer’s-type dementia – PubMed (

Neuroleptic Sensitivity in Dementia with Lewy Body and Use of Pimavanserin in an Inpatient Setting: A Case Report – PubMed (

Recent advances in Lewy body dementia: A comprehensive review – ClinicalKey