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Carene's Wellness Corner
Caring for a loved one with Lewy Body Dementia

Lewy Body Dementia (LBD) is a type of dementia that affects 1.3 million Americans. Because its symptoms can closely resemble Alzheimer's and Parkinson's diseases, it can be difficult to diagnose.

"An accurate diagnosis is important because the treatment of LBD symptoms is different than treating similar symptoms in Alzheimer's or Parkinson's," says Gary Epstein-Lubow, MD, attending psychiatrist and the assistant unit chief of Butler Hospital's Inpatient Geriatric Psychiatry Unit. "Dementia is a terminal illness. Acknowledging this can be stressful." Lewy Body Dementia

Individuals with LBD experience a progressive decline in their ability to think and reason, especially paying attention and planning. Cognitive abilities can vary within an hour, day, or week. Other symptoms include:

  • Frequent falls
  • Stiffness
  • Hallucinations
  • Tremors
  • Trouble sleeping
  • Difficulty concentrating
  • Blood pressure changes
  • Hearing or seeing things that don't exist

Caring for the caregiver

When caring for someone with LBD, begin by caring for yourself. "It can be challenging to balance self care while looking after an ill spouse, parent, or child," says Dr. Epstein-Lubow. "If you need help yourself, you won't be at your best as a caregiver."

Family caregivers are at risk for depression so learn ways to cope. Start with small steps. "Try to accept the illness and the fact that it's not curable," Dr. Epstein-Lubow advises.

Look for warning signs of caregiver burnout, which may include:

  • Withdrawal from family and friends
  • Feeling sad
  • Changes in sleeping patterns
  • Changes in appetite/weight
  • Getting sick more often
  • Being more irritable
  • Emotional and physical exhaustion

Implement safety measures

The patient's safety is always the first priority, and caregivers must be prepared to make some changes – such as taking your loved one's car keys away if they are not able to drive safely.

Minimize injury at home by addressing problematic areas. Maybe limit the patient to the first floor if stairs can be confusing and cause falls. You may want to block stairs with a gate. Remove throw rugs, which could be a tripping hazard. Install grab bars next to toilets and in showers as an extra safety precaution.

Be prepared.

  • Have a current list of the patient's medications and health history handy.
  • Connect with at least one clinician who is knowledgeable about LBD.
  • Think about the long-term, such as housing and end-of-life wishes.

Accepting help

As a caregiver, don't be afraid to ask for and accept help from family members, friends, neighbors, and community volunteers. They can assist with everyday tasks, such as driving the patient to appointments, providing social stimulation, or relieving you from household chores so you can rest or run errands.

Consider professional services, such as:

  • Adult day-care programs
  • In-home health aides
  • Geriatric care or case managers
  • Long-term care providers
  • Caregiver support groups
  • Getting food delivered by Meals on Wheels

For caregiver support with LBD, visit the Lewy Body Dementia Association (LBDA) website at www.lbda.org or call 800 LEWY SOS.


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