Lewy body dementia (LBD) is the second most common form of progressive dementia, affecting more than 1.3 million in the U.S. alone. However, LBD is highly underdiagnosed. The combination of cognitive, motor and behavioral symptoms early in the course of LBD creates a highly challenging set of demands for continuing care. Here are just a few tips for LBD caregivers:
1. Cognition and Driving
While LBD can affect memory as the disease progresses, it has a greater impact on other thinking skills such as problem solving and reasoning early in the disorder. Eventually the cognitive decline in LBD will make driving unsafe. Building an open dialogue about specific, observed behaviors and concerns may help you broach this difficult subject. If you meet with strong resistance, reach out to someone the person with LBD views as an authority figure, like a doctor, to convince your family member they must stop driving.
2. Watch Out for Sensitivity to Medications
People with LBD can be very sensitive to certain medications, especially neuroleptics. Also known as antipsychotics, neuroleptics are medications used to treat hallucinations in LBD or other serious mental disorders. While older “traditional” antipsychotic medications (e.g. haloperidol) are commonly prescribed for individuals with Alzheimer’s with disruptive behavior, these medications can cause severe and sometimes dangerous side effects in someone with LBD. LBD caregivers must be vocal advocates about avoiding these medications, especially in a hospital setting where healthcare professionals may not be familiar with LBD.
3. Address all sleep disorders
Most people with LBD have at least one sleep disorder. One of the most common, “rapid eye movement (REM) sleep behavior disorder” (also called RBD) is a risk factor for Parkinson’s disease and Lewy body dementia and may develop years or even decades before other symptoms of these disorders. People with RBD physically act out their dreams, sometimes causing injury to the person or their bed partner. RBD can usually be well-managed with medications like melatonin or clonazepam. Discuss sleep apnea, restless leg syndrome and excessive daytime sleepiness with a neurologist, as poor or disrupted sleep has a negative effect on cognition in LBD.
4. Look for community resources BEFORE you need them
No two cases of LBD are alike and the speed of its progression varies from person to person. Explore resources in your community, such as the Area Agency on Aging, services like home health aides and visiting nurses and residential support like respite care and long term care facilities before you need them. This allows you to learn about the providers, the costs and any intake processes when you are not in a crisis situation.
5. Take Care of Yourself
We have all heard the following advice on an airplane. “Put on your own oxygen mask first.” The same holds true for caregivers. By placing your own physical, medical and emotional needs on equal par with the person with LBD, you may help prevent excessive stress, caregiver burnout and depression. Build a solid support system that includes friends and family, an LBD-knowledgeable physician and connect with other LBD caregivers. Visit the Lewy Body Dementia Association at www.lbda.org to find local LBD support groups, call the LBD Caregiver Link (800-539-9767) and the online community of caregivers on the LBD Forum.
Elizabeth Patrick is the Marketing and Communications Manager for the Lewy Body Dementia Association.