More than 60 experts from the International Dementia with Lewy Bodies (DLB) Consortium collaborated to update the diagnosis and treatment guidelines for DLB as we do know that earlier detection may improve treatment efficacy (Tabar, 2017). Prior to this collaboration the guidelines were updated in 2005 and there had not been agreement between experts regarding treatment options (Lindquist, 2017).  The full article and findings are available in the June 2017 edition of the journal Neurology.

Bradley Boeve, MD, a Mayo Clinic neurologist and co-author of the paper published in Neurology explains that while professionals in long-term care recognize DLB as one of the most common forms of dementia, laymen and some physicians are not aware of it which can result in delayed diagnosis and treatment (Lindquist, 2017).

Researchers at Newcastle University have specifically differentiated Lewy body mild cognitive impairment (MCI) to produce a list of symptoms associated with the earliest stages of DLB MCI (Tabar, 2017). Tabar (2017) lists the characteristics specific to DLB MCI as: Fluctuating concentration, periods of muscle rigidity, changes in handwriting, gait and posture changes, drooling and symptoms of REM sleep disorder. These symptoms are less often noticed prior to the major symptoms of DLB, described below. Greater awareness of the early symptoms associated with DLB MCI may increase likelihood of earlier diagnosis, interventions and treatment, ultimately slowing the progression of the disease.

Stempak (2017) describes the major symptoms of DLB: cognitive problems involving confusion, attention span and memory loss; fluctuating attention with drowsiness, staring into space, daytime naps and disorganized speech; visual hallucinations; sleep difficulties that encompass physically acting out dreams; movement disorders; diminished regulation of body function such as dizziness, falls and bowel issues; and depression resulting in persistent sadness and loss of interest.

Diagnostic criteria are established by differentiating clinical features as core or supportive and biomarkers as indicative or supportive to generate categories of probably or possible DLB (Neurology, 2017).  The revised criteria lay out essential factors, core clinical features, supportive clinical features and indicative and supportive biomarkers. Early diagnosis is paramount to managing symptoms including progressive cognitive decline that may impact daily activities, memory, attention and sensory abilities.

Management of DLB is involved and requires various complex approaches beginning with identifying signs and symptoms and obtaining a comprehensive evaluation to determine an accurate diagnosis.  From that point, the patient and caregiver require engagement and education from a multidisciplinary team perspective. DLB impacts all levels of functional status and treatment is focused on the most common symptoms of the disorder with both pharmacologic and nonpharmacologic interventions.

The authors of the Neurology paper note that pharmacologic treatments share certain risks as well as having limited evidence for efficacy. In addition to pharmacologic interventions they suggest increased development and testing of nonpharmacologic therapies for both the patient and the caregiver. Most research for nonpharmacologic interventions has been directed toward Parkinson’s Disease and Alzheimer’s Disease with exercise, cognitive training and behavioral symptom management by the caregiver. There is early evidence of positive outcomes however research on nonpharmacological interventions remain in the preliminary stages.

Recommended actionables for your facility’s best practices:

• Consider partnering with or drawing upon information from your local Lewy Body Dementia Association (LBDA).
• Review your facility’s behavioral symptom management program specific to DLB. Include training on stress management and communication for team members as many times people with DLB respond to the emotions and actions of the people around them. Keeping flexibility in mind, a consistent routine with minimal distraction helps people with DLB successfully navigate their environment.
• Review medication regimens to determine if residents diagnosed with DLB are receiving medications contraindicated for use. Based on resident status have the pharmacist and/or physician develop a risk benefit statement demonstrating the resident’s specific symptoms being addressed by the medication(s) or initiate a gradual dose reduction.

It’s interesting that many other disorders and standards of practice have been revised multiple times since 2005 and LBD is included in the DSM-5 as a Neurocognitive Disorder (NCD). This indicates the complexity of DLB and the importance of advocating for more research and practice standards. The information resulting from the 2015 International Dementia with Lewy Bodies Consortium provides an excellent framework for evaluating your facility’s best standards of practice and updating protocols using evidence-based information.

Erica Holman, LNHA, MSW, CDP

Senior Risk Manager – HealthCap RMS

References

Lindquist, Susan Barber. New international guidelines issues on dementia with Lewy bodies. June 7, 2017.  https://newsnetwork.mayoclinic.org/discussion/new-international-guidelines-issued-on-dementia-with-lewy-bodies/

McKeith, I.G., Boeve, B.F., Dickson, D.W., et al.
Diagnosis and management of dementia with Lewy bodies: Fourth consensus report of the DLB Consortium