Caregiving Tips for Lewy Body Dementia
Guest article by Elizabeth Patrick
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 frequently misdiagnosed. 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 5 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’re met 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 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. With more than thirteen years of marketing and communications for museums and nonprofits, Elizabeth also enjoys cooking and spending time with her husband and 5 year old.
SOURCE: National Parkinson Foundation: Caregiver Tips for Lewy Body Dementia [Updated 10/20/2017 Link no longer available.]
Don,
Here is the link to the Family Caregiver information [UPDATE 2/22/2018 The CertifiedCare (dot) org link no longer works.]
Hope this helps!
Dr. CC
[UPDATE 2/22/2018: Dr. CC’s CertifiedCare(dot)org link no longer works.]
Dr. Mr. McCormick,
It is good that you are able to write about your challenge with your dear Marie. You might consider joining a general Alzheimer’s/dementia caregiver support group in or near your area as they are much more common and you will most likely find people who can listen with understanding and share advice or give support. You might also benefit from reading about all of the issues that occur during the process with caring for a loved one so you will feel and be more confident and prepared for this experience. There are resources online which might prove convenient for you such as the CertifiedCare.org Family Caregiver program. You do not have to take the test or get certified unless you want to, however the information alone will help greatly.
You are to be commended for your efforts and loyalty. We wish you all the best.
I wish I had some resources to go to. The AOA her in PWC Va, says I make too much money for them to help me. There are no real LBD support groups here and hardly anyone knows about LBD. This morning was the worse in about 3 months. My Marie refused to take her medications. Spit them all back out at me. She keeps them on the tongue and then takes them out. Not really spit just takes them out and they of course are all together and a mess. Now she just told me that someone took $5,000 out of the house. I never have more then $100 in this house. Really a very bad morning. Anyone knows of Support in the Dumfries Va area please let me know.