The Many Perspectives of Lewy Body Dementia
What is Lewy Body Dementia (LBD)? Well, affecting an estimated 1.4 million individuals and their families in the U.S., it is not a rare disease. Because the symptoms of LBD can closely resemble other types of dementia, coupled with the medical profession’s unfamiliarity with it, LBD is often misdiagnosed.
LBD is actually an umbrella term for two related diagnoses, referring to both the dementia associated with Parkinson’s disease, and dementia with Lewy bodies (abnormal protein deposits that disrupt the brain’s normal functioning). Early diagnosis of LBD allows for important early treatment which could extend the quality of the life and independence of the person living with the disease.
LBD may only show itself as a memory problem conditions in the later stages or stressful moments, leading to an incorrect assumption that medications are needed to manage the symptoms. Unfortunately, the medications used to manage mental health conditions carry a very high risk of worsening abilities, unintended side-effects, paradoxical reactions, hypersensitivity, and toxicity resulting in death.
To complicate matters, the symptoms of Parkinson’s can hide the presence of LBD, and the symptoms of LBD can be misidentified as Parkinson’s. This can cause great problems because when medications used to treat tremors and rigidity (as seen with Parkinson’s patients), the hallucinations, sleep problems, and thinking problems associated with LBD can escalate.
So, what do we do? Teepa Snow, a well-respected advocate for those living with dementia, suggests development of a combination of skills and approaches is best. It helps to be curious, non-judgmental, and supportive. An ability to recognize indications that things are changing is essential. This can be done through our observations and can help ensure we, as care partners, provide the support and care that matches the person’s in-the-moment experience. With LBD, in particular, there is a high degree of variability from one moment to the next and missing the signals and signs often results in non-management or mismanagement of the condition. This leaves the person living with LBD experiencing a sense of isolation, fear and anxiety, and missed opportunities.
Cheri Elson, J.D.
Gray Matters Consulting
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