Lewy Body Dementia Impacts the Entire Autonomic Nervous System

When people hear “dementia,” they usually think of memory loss. But Lewy body dementia, which includes dementia with Lewy bodies and Parkinson’s disease dementia, affects much more than thinking. It often disrupts the autonomic nervous system, the part of the nervous system that runs the body’s automatic functions without our thinking about them.

What the autonomic nervous system does

The autonomic nervous system controls blood pressure and heart rate, digestion, bladder function, sweating and body temperature, and sexual function. In Lewy body dementia, abnormal clumps of a protein called alpha-synuclein (Lewy bodies) build up not only in the brain but also in the nerves that control these functions. Doctors call the resulting problems dysautonomia. It is common enough that problems like these are listed among the features doctors consider when diagnosing dementia with Lewy bodies, and they can begin years before memory problems appear.

Common autonomic symptoms

• Blood pressure drops on standing (orthostatic hypotension). Dizziness, lightheadedness, blurred vision or fainting when getting up, a major cause of falls.
• Constipation, often one of the earliest symptoms.
• Slowed stomach emptying, causing fullness, nausea or poor appetite.
• Bladder problems, such as urgency, frequent urination, nighttime urination or incontinence.
• Sweating and temperature changes, including too much or too little sweating and trouble tolerating heat or cold.
• Sexual dysfunction.
• Swallowing difficulties and drooling, which may also be related to movement changes.

Why it matters for families

Autonomic symptoms can be as disabling as memory changes. Sudden drops in blood pressure can cause falls and injuries. Episodes of fainting can look like the “fluctuations” in alertness typical of Lewy body dementia. Constipation and bladder problems can lead to discomfort, infections and increased confusion. And in Florida’s heat, trouble regulating body temperature makes hydration and air conditioning especially important.

Practical ways to help

• Stand up slowly: sit at the edge of the bed for a minute before standing.
• Offer fluids throughout the day, unless the doctor advises otherwise.
• Ask the doctor about compression stockings, raising the head of the bed, and whether any current medicines may be lowering blood pressure.
• Encourage fiber, fluids and activity to help with constipation.
• Use a regular bathroom schedule and easy-to-remove clothing.
• Keep rooms at a comfortable temperature and watch for overheating.
• Keep a symptom log, including dizziness, falls and bathroom changes, to share with the doctor.

Work with the medical team

Many autonomic symptoms can be treated or managed. Because people with Lewy body dementia can be very sensitive to certain medicines, including some antipsychotics, it’s important to work with a doctor experienced in Lewy body dementia, such as a neurologist or movement disorder specialist. The Lewy Body Dementia Association offers more information for families.

Care that sees the whole person

Caring for someone with Lewy body dementia means paying attention to the whole body, not just memory. In a memory care home, caregivers can help with safe transfers, hydration, bathroom routines and watching for changes, and share what they see with the medical team.

This article is for general information and is not medical advice. Talk with a doctor about symptoms and treatment.

Have questions about memory care for someone you love? Call Generations Senior Living at (352) 474-2696 or schedule a tour of one of our three homes near The Villages.