The Importance of Teamwork
At the present time, Lewy body dementia (LBD) is not preventable or curable, but some symptoms of the condition may respond to treatment, at least in its earlier stages. A comprehensive treatment plan includes a variety of therapies and counseling, as well as medications. For the purpose of clarity, details about medications are addressed in another article. The goals of treatment are safety within the home, successfully managing the tasks of daily living with ease, providing social support, and prolonging independence to the extent that safety allows. A team of health professionals can provide guidance to help maintain, or even improve, quality of life for both people with LBD and their caregivers.
Ideally, a neurologist specializing in dementia and/or movement disorders, usually associated with an academic medical center, should act as team leader. General neurologists and primary care providers may not be familiar with the management of LBD, so early is understanding of the disease. If a specialist in dementia and/or movement disorders is not accessible, a general neurologist may lead the patient’s care. Other helpful health professionals include:
- Physical therapists can help with movement problems through strengthening and flexibility exercises, including gait training.
- Occupational therapists provide guidance in managing everyday tasks (such as eating) to maintain as much independence as possible.
- Music or art therapists can guide activities for pleasure and meaning, to reduce anxiety and improve quality of life.
- Speech therapists help with voice projection and volume, as well as swallowing difficulties.
- Mental health professionals can provide valuable support and guidance for managing the emotional burden of LBD.
Support groups, for both patients and caregivers, can give emotional and social support, sharing like experiences and helpful knowledge about managing day-to-day issues.
Palliative care, also called comfort care, refers to improving quality of life by relieving symptoms. With LBD, palliative care can address constipation, sleep disorders and behavioral problems. A variety of professionals may assist with emotional, social, and spiritual support, coordinate care and help make medical decisions.
Sleep disorders, which can be severe and quite debilitating are very common in LBD. They contribute to behavioral problems and confusion. A sleep study, ordered by a physician, may identify the nature of a patient’s sleep disorder, such as sleep apnea, or restless legs syndrome.
REM sleep behavior disorder, very common in LBD, is acting out dreams. It contributes to lost sleep and possible injury, not just for the patient, but for the caregiver as well. Clonazepam, a drug used for panic attacks, is often effective at very low doses, but it can cause dizziness, unsteadiness, and confusion. Melatonin is a natural hormone used to treat insomnia. It may be effective alone or with clonazepam.
Excessive daytime sleepiness is also common in LBD. Sometimes a stimulant is prescribed to help the patient stay awake during the day.
Increased daytime activity or exercise, avoiding lengthy or frequent naps, as well as avoiding alcohol, chocolate, or caffeine may help.
In a person with LBD, there are many stimuli or discomforts that can trigger behavioral problems, which would not be associated with behavioral problems in a person without dementia. Pain, illness, fear, feeling overwhelmed, frustration, stress and anxiety can trigger a person with LBD to resist care, or lash out verbally or physically. A physician should be consulted to evaluate behavior problems systematically:
- Rule out physical causes, such as infection, pain, or other medical conditions.
- Review prescription and over-the-counter medications.
- Consider environmental or social factors.
The underlying cause(s) should be treated appropriately.
- Lewy Body Dementia Treatment and Management. National Institute on Aging, National Institutes of Health. http://www.nia.nih.gov/alzheimers/publications/lewy-body-dementia/treatment-and-management
- Zupancic M, Mahayan A, Handa K. Dementia with Lewy bodies: Diagnosis and management for primary care providers. Primary Care Companion CNS Disord. 2011; 13(5): PCC11r01190
- Kosako K. Lewy body disease and dementia with Lewy bodies. Proc Jpn Acad Ser B Phys Biol Sci. 2014 Oct 10; 90(8):301-306