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A Day in the Life of Lewy Body Dementia

A Day in the Life of Lewy Body Dementia


Have you ever wondered what life would be like if you suffered from dementia other than Alzheimer’s disease?

The Lewy Body Dementia Association (LBDA) explains what a typical day looks like for caregivers and their loved ones who suffer with Lewy body dementia (LBD), a complex, challenging, and surprisingly common brain disease.

LBD families have unique challenges that differ from Alzheimer’s, and awareness is needed by healthcare professionals and the general public to better support them.

Judy picks out Bob’s clothes every morning and helps him dress. After a slow, unsteady walk down the stairs, he takes the medicine Judy doles out and later “helps” her dry the breakfast dishes. They go out together some days to run errands, but everything takes longer now because of Bob’s confusion, muscle stiffness, and slow, shuffling walk.

Sometimes he can zip his coat up on the first try, but there are days he doesn’t understand how a zipper works.

With symptoms that resemble both Alzheimer’s and Parkinson’s disease, LBD is the most misdiagnosed form of dementia. Following Alzheimer’s disease, it is the second most common cause of progressive dementia, affecting 1.3 million Americans.

“Recognizing LBD at its earliest stage is critical not only for an accurate diagnosis by the appropriate specialist but also because it is important for a patient with LBD to be managed by an expert familiar with dementia in general and LBD in particular,” says Howard I. Hurtig, M.D., Chair Emeritus, Department of Neurology, Pennsylvania Hospital, and Elliott Professor of Neurology, Perelman School of Medicine, University of Pennsylvania.

A primary care physician with the best intentions may not be well informed.

“A primary care physician with the best intentions may not be well informed, so it becomes the duty of the patient and caregiver to know about resources such as the LBDA and the Alzheimer Association for help when needed.”

Judy can’t leave Bob home alone any longer because delusions and hallucinations make him really anxious and upset, for instance, when he’s convinced there are other people in the house. He’s even called 911 about intruders.

The doctor tried several different antipsychotic medications before finding one that didn’t make him more confused or worsen his muscle stiffness or movement.

By the end of the evening they’re both exhausted, but Judy has to help Bob get a shower and ready for bed. Finally asleep, Bob’s dreams sometimes turn frightening and he shouts and kicks, always waking Judy up and sometimes even injuring her. Relaxing days and restful nights are hard to come by at their house.

A Checklist of Symptoms: A Day in the Life of LBD

LBDA developed a checklist of Lewy Body dementia diagnostic symptoms to help unveil the symptoms of this debilitating disease and to help doctors, caregivers and people with LBD get the diagnosis and support they need.

Caregivers or people with cognitive and/or movement symptoms should record their experience and talk to an expert. The symptoms below* may indicate a diagnosis of Lewy body dementia should be considered.

Download the checklist or access other resources. 

  • Changes in thinking skills
  • Confusion and forgetfulness
  • Trouble with problem solving or analytical thinking
  • Difficulty planning or keeping track of sequences (poor multi-tasking)
  • Disorganized speech and conversation
  • Difficulty with sense of direction or spatial relationships between objects
  • Fluctuating levels of concentration and attention
  • Episodes of unexplained confusion or decreased alertness
  • Parkinson’s-like symptoms (“parkinsonism”)
  • Slowness of movements
  • Muscle rigidity and stiffness
  • Tremor
  • Shuffling walk, balance problems and falls, change in posture (stooped)
  • Behavior and mood changes
  • Hallucinations: seeing things that are not really present
  • Strong reactions to medications (anti-psychotics) for hallucinations
  • Depression
  • Sleep concerns
  • Acting out dreams during sleep
  • Excessive daytime sleepiness

For more information, visit the Lewy Body Dementia website. 

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