Understanding Lewy Body Dementia: Navigating the Complexities
Lewy body dementia (LBD) occurs when abnormal protein deposits, known as Lewy bodies, build up within the brain’s nerve cells. These deposits interrupt the brain’s signals and interfere with normal functioning. LBD can occur on its own or in conjunction with Parkinson’s disease or Alzheimer’s disease, accounting for 5-15% of all dementias and being more prevalent among men than women.
Symptoms of Lewy Body Dementia
- LBD symptoms include a mix of both Parkinson’s disease and Alzheimer’s disease symptoms, such as:
- Apathy
- Rigidity and loss of motor control
- Difficulty with reasoning and thinking
- Progressive memory loss
- Language difficulties and trouble finding words
- Loss of focus and concentration
- Depression and anxiety
- Sleep disturbances, reduced REM sleep, difficulty sleeping at night
- Fatigue and daytime sleepiness
- Hallucinations
Distinctive Symptoms
LBD has two symptoms that are distinct from other forms of dementia:
Hallucinations: Unlike other types of dementia where misperception is common, LBD can cause actual hallucinations. These hallucinations are very real to the person experiencing them and can be extremely distressing. Because rationale and logic are impaired in LBD, it is often not helpful to “explain away” the hallucination. Hallucinations often worsen during times of stress or increased confusion.
Rigidity and Tremors: LBD can impact mobility similarly to Parkinson’s disease, either through rigidity or tremor. Individuals with LBD may have difficulty initiating movement, appear stuck before taking a step, have a stiff gait, or a stooped posture. Tremors or shaking in an extremity can also occur. These symptoms are specific to LBD and are not common in other types of dementia, especially in the earlier stages.
Treatments
LBD presents with a wide range of symptoms, and there are medications to treat each symptom separately. The challenge is that a medication to treat one symptom often worsens another or causes side effects that may be worse than the initial symptoms. Patients are sometimes asked to prioritize which symptoms to treat. Because of the complex nature of LBD, treatment of symptoms is highly individualized.
Success Strategies
Managing Hallucinations: Hallucinations can be terribly disturbing to the person with LBD. Always remember that the hallucinations are very real to them. Being dismissive and saying “oh, don’t be silly, nothing is there,” is not reassuring and will only frustrate the person more. Typically, it is not effective to try and convince someone that what they are seeing is not real. Do not argue that the hallucination isn’t real!
If someone asks if you can see what they are seeing, it is okay to admit, “I’m not seeing what you are seeing right now, but perhaps we can take care of it together.” Although the hallucination is not real, their emotional response is very real. If they are hallucinating something frightening, their emotional response of fear is completely real, and they are living with that fear. The most important way to assist is to help manage their emotional response and ideally work towards a happier state. Once their emotions have been addressed, distraction can be very helpful. Continuing to focus on the hallucination typically isn’t productive, but moving on to something else can provide the necessary distraction to interrupt the hallucination.
Support for Family Members: Hallucinations are terrifying and exhausting for the person experiencing them, but they can also be exhausting and overwhelming for family members. Hallucinations are often recurring, and addressing the same emotional response to the same hallucination each evening can be tiresome for a family caregiver. Enlisting the support of a professional caregiver can be helpful in managing repeated hallucinations. The caregiver can provide the necessary distraction and redirection to make for a calmer and more peaceful evening for everyone.
