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Dementia Caregiving Can Cause Considerable Challenges

While October is noted as “Lewy Body Dementia Awareness Month” and November as “Family Caregivers Month,” the difficult realities for caregivers stemming from these two important designations are often intertwined.

Lewy Body Dementia

Also known as LBD, or sometimes dementia with Lewy bodies, Lewy body dementia is one of the most common forms of dementia in older patients. It’s estimated that over a million people in this country have this challenging disorder, a disease that the late comedian Robin Williams’ widow Susan called “the terrorist inside his brain.”

Named after Dr. Frederich H. Lewy, the German neurologist who first discovered this brain abnormality back in the early 1900s, LBD is a neurodegenerative, progressive disease involving abnormal protein deposits that form in the brain cells responsible for cognition, motor skills and behavior. Symptoms of the disease often overlap with Alzheimer’s and Parkinson’s disease dementia.

LBD Symptoms Can Vary

There currently are no treatments to stop the brain damage caused by LBD. It may be hard for some family caregivers to understand the difference between Lewy body dementia and Alzheimer’s disease. Physicians can test with brain imaging and neuropsychological tests to help distinguish LBD from other diseases. Medical practitioners can provide guidance along with antidepressants and other medications as well as physical and speech therapies to help address some of the symptoms.

According to the Alzheimer’s Association, LBD symptoms can include:

  • Decline in thinking and reasoning

  • Confusion

  • Slower gait

  • Delusions and/or visual hallucinations

  • Memory loss

  • Sleep disturbances

  • Depression

  • Fluctuation in behavior (alert one day, “out of it” the next)

Coping with Dementia Caregiving

Caring for someone with LBD or other forms of dementia is demanding, with responsibilities changing and increasing over time. As the disease progresses, the individual will most likely have greater difficulty managing everyday tasks. Establishing routines can help avoid agitation and confusion, as can adjusting expectations.

It’s important that caregivers try to maintain their own health. Emotional and physical fatigue can present much like depression, with irritability, resentment, weight gain or loss and withdrawal from family and friends. On one hand, caregivers want to relish the “good” days remaining with their loved one. On the other hand, plans must be made for the future.

The National Institutes of Health suggests families consider professional counseling to see how individuals can work together to manage the loved one with LBD. Therapists specializing in geriatrics may offer much needed emotional support. Additional resources include:

Seeking Respite Care Opportunities

Caregivers need to have time away to care for themselves. Breaks from caregiving helps caregivers remain compassionate and avoid caregiver burnout. This type of assistance is often known as “respite care,” providing safe, professional breaks for family caregivers for much-needed relaxation and re-charging of energy.

If respite care is not offered regularly by family or friends, home health aides from professional organizations like Reliance Home Health Care can step in for an afternoon, a day, a weekend or as needed to provide nursing and other assistance. We can even help with errands, housekeeping and other tasks that busy family caregivers in the Greater Philadelphia area simply can’t find the time for. For more information, call us at 610-896-6030 or email us at

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