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Published January 04, 2014, 03:52 PM

Bursack: Education, support help caregivers cope

DEAR CAROL: My mom has recently been diagnosed with Lewy body dementia. She’s had Parkinson’s disease for several years, but was doing well up until she developed hallucinations last month.

By: Carol Bradley Bursack, INFORUM

DEAR CAROL: My mom has recently been diagnosed with Lewy body dementia. She’s had Parkinson’s disease for several years, but was doing well up until she developed hallucinations last month. At this time, the hallucinations aren’t frightening her, but seeing her like this is terribly upsetting to me. I’ve always counted on my mom’s understanding, and now she’s seeing imaginary children sitting around her and telling me not to sit on them. She was once a teacher, so I suspect that has something to do with what she sees. My question is how do I become a better caregiver and daughter and not get so upset when she has these episodes? – Jennifer

DEAR JENNIFER: The fact that you’re writing for help tells me that you are a wonderful daughter who wants to do the best she can for her mother. Since her Parkinson’s disease remained under control for some time, it’s likely that you were somewhat in denial about the dementia side of the disease. Now, you must face reality.

Lewy body dementia (LBD) is just behind Alzheimer’s disease in frequency of occurrence. According to the Lewy Body Dementia Association, found online at www.lbda.org, LBD is an umbrella term for two related diagnoses. LBD refers to both Parkinson’s disease dementia and dementia with Lewy bodies. The experts on the site say that the earliest symptoms of these two diseases differ, but reflect the same underlying biological changes in the brain. Over time, people with both diagnoses will develop very similar cognitive, physical, sleep and behavioral symptoms.

Common LBD symptoms include unpredictable levels of cognitive ability, attention or alertness. Changes in walking or movement and visual hallucinations can also occur, as can a sleep disorder called REM sleep behavior disorder, in which people physically act out their dreams. Many people are also severely sensitive to medications for hallucinations, so treatment can be challenging.

Like many people, your mother’s disease began with a Parkinson’s diagnosis and that’s what her treatment has been for. Now that the dementia symptoms are appearing, she will be treated for both Parkinson’s disease and Lewy body dementia.

You seem to be more worried at this time about your mother’s hallucinations than about her physical symptoms of Parkinson’s disease. That’s understandable. While the physical issues with your mom are distressing enough, the cognitive issues can be harder to cope with. I know because I’ve been in a similar situation. Your mother’s impaired brain function is causing behavioral changes that can make you feel you are losing touch with her.

Please learn as much as you can about LBD from the Lewy Body Dementia Association. Your mom will need your support and you’ll need the support of others who understand. If you can’t find a support group specifically for LBD near you try an Alzheimer’s group, either online or in person, since you’ll share similar issues. Ask professionals for advice and listen to other caregivers. Both groups can help you develop methods of managing the changes your mom will go through as well as caring for yourself.

Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com. Her blog can be found at www.mindingoureldersblogs.com.

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