Is it Lewy Body?

[Montrose Daily Press | January 23, 2021 | By Kathryn R. Burke] Lewy Body dementia (LBD or DLB) is the second most common type of dementia and the most often mis-diagnosed. The progressive disease has no cure and is characterized by changes in behavior or cognition (dementia), movement (Parkinson’s disease or PD), and autonomic functions). Both forms may include (or even begin with) neuropsychiatric symptoms such as hallucinations, delusions, and behavioral problems. The symptoms are caused by underlying biological changes in the brain. Near the end of life, Alzheimer’s Disease (AD) often co-exists with Lewy Body, but it is not the same disease. Memory loss is sporadic with LBD, progressively downward with AD.

My husband died of Lewy Body disease. He lived seven years after his symptoms became obvious (although in retrospect, underlying symptoms had been there for decades). His last few years were extremely difficult, and he eventually exhibited all of the physical, mental, neurological, and autonomic complications of LBD. When he began having trouble walking and thinking clearly, we began seeking help. He was initially diagnosed with Alzheimer’s and ALS. Neither were correct.

It was a person in my caregiver group that suggested Lewy Body, which was eventually confirmed by his doctors. I quickly learned my most important job as his caregiver was education and advocacy. Why? Early and accurate diagnosis is important; LBD patients may react differently or have severe reactions to medications used to treat AD or PD. As the patient loses touch with reality or exhibits peculiar thinking, regardless of medical advice or suggestions, it is the caregiver experiencing the patient’s disease progression, who must understand the disease and firmly direct care. That means having the courage to make care decisions, especially about medications, and stick with those decisions.

I also recognized that care for the caregiver should come before care for the patient. Otherwise, the caregiver may not outlive the person they are caring for. Managing LBD requires major behavioral changes by the caregiver. A show of anger or frustration can frighten or cause a patient to react overtly and negatively. Caregivers must stay calm and loving, offer support and understanding, which means changes in relationships. Caring for a spouse or a parent may mean role reversal as patient reverts to child and caregiver becomes responsible adult. As a caregiver, you must carve out time for yourself to stay physically and mentally healthy. And in today’s Covid Crisis atmosphere, that also means finding someone who can step in and help if you become ill or quarantined.

How do you manage this disease? How do you recognize and identify it? Where do you get help? The best resource I found was the Lewy Body Dementia Association (LBDA). I contacted them even before we had an official diagnosis. Knowledgable, informative, and caring, with links to a great deal of information, LBDA virtually held my hand every step of the way. Here is what else I did.

  • Researched LBD—cross checking and comparing information about diagnosis, symptoms, and treatments—and sharing what I found with our doctors.
  • Continued with my local support group (members dealing with a variety of situations and at least two, it turned out, with LBD).
  • Sought and received in-home help through military insurance, private-pay, hospice companionship program, and our church.
  • Found a job where I could work mostly from home that would help me pay for private care (eventually up to 2-3 shifts a day).
  • Took “away-breaks” which included daily exercise, naps, counseling, spending time with friends, and at least twice a year, a three-day to one-week vacation while someone stayed with him.
  • Got us signed up for Hospice, first palliative, then full hospice when he went into a nursing home.


Kathryn R. Burke, former caregiver, is the author of The Caregiver’s Journey, Navigating the Path, and The Caregiver’s Journey, Building Your Care Team. She has also published other books on caregiving. All are available from San Juan Publishing. She is also a public speaker on caregiving and offers help on her FB page,