Dementia Caregivers: Navigating the Emotional Roller Coaster of Lewy Body Dementia

October 14th, 2014

The challenges of dealing with progressive memory loss can be overwhelming for family caregivers, especially for those whose loved ones suffer from Lewy body dementia (LBD). The second most common type of progressive dementia after Alzheimer’s disease, LBD causes unpredictable changes in behavior that can make caregivers feel like they are on an emotional roller coaster, riding highs and lows from one day to the next. Over time, the constant psychological swings that dementia caregivers experience while watching over a person with LBD can take an emotional toll on their own well-being.

What Is LBD?

According to the Lewy Body Dementia Association, LBD is an umbrella term for two related diseases: Parkinson’s disease dementia and dementia with Lewy bodies. Dementia caregivers who live with or regularly visit LBD loved ones may find themselves confronting periods of time in which there appears to be an improvement in mental function, abruptly followed by bouts of acute confusion that may be coupled with visual hallucinations. These extreme fluctuations in behavior — which can take place minute to minute, hour by hour, or day to day — create what family caregivers call the “roller-coaster effect.” That effect can be particularly damaging for dementia caregivers who are close with the older adult LBD patient, causing them to feel hopeless and alone. Fortunately, there is support dedicated specifically to caregivers whose loved ones suffer from this difficult disease.

Support for Dementia Caregivers

Although no cure for LBD exists at present, family caregivers can take comfort in knowing that medication and therapies may slow the progression of cognitive decline, reduce hallucinations, and help decrease the severity of other behavioral problems. The Mayo Clinic has specific tips for LBD caregivers that are designed to make life at home easier. These include cutting clutter and noise to help the person focus and adapting to unusual behaviors by avoiding criticism and instead reassuring the individual to validate her concerns.

In addition, the Lewy Body Dementia Association has a wealth of resources available to aid family caregiving, starting with educational information and a medication glossary. The organization’s website also offers links to books written by those who have cared for a person with LBD, a newsletter, local support groups, discussion forums, and social networks where family caregivers can share their experiences and find the emotional solace and support they need to effectively cope with this difficult disease.

If you are the primary caregiver for a loved one who suffers from LBD, you’re not alone. Reach out, ask for help, and look into the variety of resources available to help you support both yourself and your loved one.

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