Our bodies all have natural cycles of fluctuation in sleep, appetite, body temperature, hormone controls, alertness and blood pressure.
The fluctuations related to Lewy body diseases are different. They don't necessarily have a regular cycle or rhythm. They affect cognition but they can also affect motor function, communication and even behaviors. These fluctuations are not natural. They are caused by the loss of
- dopamine, important for movement, attention and reward centers
- acetylcholine, important for cognition, wakefulness and attention.
- age, dementia severity
- delirium (infection, dehydration, intoxication or withdrawal, metabolic issues)
- medical conditions, neurologic conditions (stroke, seizures)
- sleep issues, alcohol use, pain, discomfort
- mood, catastrophic emotional reactions
- medication side effects, including but not limited to:
- anticholinergic agents,
- dopamine agonists,
- sedating medicines,
- oral steroids
- accepting them as a part of the LBD disease. Accepting allows you to let go of negative emotions that can make the symptoms worse and last longer.
- looking for patterns so that you can adjust activities to fit your loved one's more aware parts of the day. When is your loved one's most alert time of the day? That might be the best time to plan personal care. When is the time of the day when Bad Times are more likely to appear? That might be a good time to schedule naps.
For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia Managing Cognitive Issues in Parkinson's and Lewy Body Dementia Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.