Dementia with Lewy Bodies


  • Dementia with Lewy bodies (DLB) is known as a Parkinson-Plus Syndrome. These conditions resemble Parkinson’s Disease but have additional features.
  • Abnormal proteins called Lewy bodies are found widespread throughout the brain.
  • Symptoms are different for everyone, some people have a few and others have many. These can involve cognition (thinking), movement, behavior, and mood.
  • Cognitive changes typically begin first, movement symptoms develop a year or so later.


  • Challenges with memory, planning or completing tasks
  • Thoughts may be disorganized or illogical. Judgment, sense of time and place, language and numbers can be difficult.
  • Alertness can wildly fluctuate.


  • Depression or anxiety
  • Visual hallucinations are common. They often including animals or people, and are not usually scary.
  • Restlessness, pacing, hand wringing, constant repeating, or irritability
  • Delusions, false fixed beliefs that are real to the person
  • Paranoia, suspicion that people are stealing personal items
  • Sleep issues, including acting out dreams (REM sleep behaviors) and daytime sleepiness


  • Tremor or shaking, most commonly at rest
  • Small handwriting
  • Reduced facial expression, soft voice
  • Stooped posture, shuffling walk, slow/stiff movement
  • Balance problems, falls


  • Your health deserves a team approach. Sharing your diagnosis with those closest to you can help you stay healthy and have support.
  • Schedule a CARE PLAN (see below), call our office 704-577-3186 to do so.
  • Bring list of symptoms you are experiencing to appointments, call sooner if urgent.
  • Exercise is very beneficial, as is eating healthy, hydrating and getting enough sleep.
  • Physical, speech, and occupational therapy may be recommended.
  • Common medications used in DLB include those used to treat Alzheimer’s and Parkinson’s disease, anti-depressant, anti-anxiety, or anti-psychotic medications.

What is a care plan?

  • A Care Plan visit is a one-hour appointment. This is typically attended by the primary caregiver or care partner, our Nurse Practitioner or Physician Assistant, and Social Worker. If you are unsure if the patient should attend this appointment, please contact our office to ask.
  • What’s discussed?
    • Diagnosis
    • Main concerns and goals
    • Advance Directives
    • Safety assessment
    • Strategies as needed for behavior, personal care, and communication
    • Caregiver stress
    • Community resources


  • See our website, select Education, select Take Charge Resource Library. Brain Health has information to stay healthy, and you will find handouts and videos addressing various topics on this site.
  • Support groups are valuable for emotional and social support for individuals with DLB and their care partners/caregivers (see info below). Counseling is often beneficial.
  • Book: Dementia with Lewy Bodies & Parkinson’s Disease Dementia by J. Eric Ahlskog, MD
  • Lewy Body Dementia Association- have support groups and Facebook support groups
    • Phone(s): (404) 935-6444, (800) 539-9767
    • Website:
    • Email for support groups:
  • Lewy Body Dementia Resource Center
  • NIA Alzheimer’s and Related Dementias Education and Referral (ADEAR) Center
  • National Institute of Neurological Disorders and Stroke (NINDS)