Dementia with Lewy bodies has no cure but the symptoms can be treated.
If you have a diagnosis of dementia and then at least 12 months later you begin to experience Parkinson’s symptoms, you’re likely to receive a diagnosis of Dementia with Lewy bodies.
What is Dementia with Lewy bodies?
Dementia with Lewy bodies (DLB) and Lewy body Dementia (LBD) are terms that refer to a spectrum of disorders involving abnormal deposits of alpha-synuclein protein in the brain, known as Lewy bodies. Both terms are often used interchangeably, but there are slight distinctions:
- Dementia with Lewy bodies (DLB) is used when dementia symptoms appear first or within a year of the onset of Parkinson’s motor symptoms. DLB typically involves significant cognitive impairment, including problems with attention, executive function, and visual-spatial abilities, along with fluctuating cognitive abilities, hallucinations, and motor symptoms similar to Parkinson’s.
- Lewy body Dementia (LBD) is an umbrella term that includes both Dementia with Lewy bodies (DLB) and Parkinson’s Disease Dementia (PDD). LBD encompasses any form of dementia associated with the presence of Lewy bodies in the brain. Therefore, LBD refers to the broader category of disorders, while DLB and PDD are specific types within this category.
To iterate, LBD is a general term that includes both DLB and PDD, whereas DLB specifically describes the condition where cognitive symptoms precede or coincide with motor symptoms within a year.
Dementia with lewy bodies is a progressive neurological disorder that shares characteristics with both Parkinson’s and Alzheimer’s. It is the second most common form of dementia after Alzheimer’s disease. LBD is characterised by the presence of abnormal protein deposits in the brain called Lewy bodies, which are also found in Parkinson’s.
The symptoms of DLB can vary but typically include cognitive impairment (such as memory loss, confusion, and difficulty with thinking), changes in alertness and attention (fluctuating cognition), visual hallucinations, and motor symptoms similar to Parkinson’s (such as tremor, stiffness, slowness of movement). Individuals with LBD may also experience sleep disturbances, autonomic dysfunction (such as changes in blood pressure and temperature regulation), and psychiatric symptoms (such as depression, anxiety, and apathy).
Diagnosing LBD can be challenging due to its overlapping symptoms with other neurodegenerative disorders. It often requires a thorough clinical evaluation, including medical history, neurological examination, neuropsychological testing, and sometimes brain imaging. Treatment focuses on managing symptoms to improve quality of life and may involve medications to address cognitive, motor, and psychiatric symptoms. Supportive care, including caregiver education and support, is also crucial in managing the complex challenges associated with LBD.
What are the common symptoms & treatments of DLB?
Not everyone who has DLB will be diagnosed with Parkinson’s. DLB can cause Parkinson’s-like symptoms (i.e. slowness, stiffness, tremors, and shuffling walk), but they may look slightly different. You may experience:
- less tremor, tremors when you’re at rest or when using your hands
- more stiffness in your torso
- earlier balance problems
- instead of a one-sided presentation, symptoms may occur on both sides of your body.
- faster progression than the progress of Parkinson’s disease dementia.
Common symptoms may look like both Parkinson’s and Alzheimer’s:
- Visual hallucinations: Seeing things that aren’t there.
- Cognitive fluctuations: Changes in alertness and thinking.
- Sleep disturbances: Acting out dreams, shouting, or thrashing during sleep.
- Autonomic dysfunction: Problems with blood pressure, heart rate, and digestion.
- Behavioural changes: Depression, apathy, and agitation.
While there is no cure for DLB, treatments focus on managing symptoms:
- Medications: Cholinesterase inhibitors (e.g., rivastigmine) to improve cognition, carbidopa-levodopa for movement symptoms, and antipsychotics for hallucinations (with caution).
- Therapies: Speech pathology, physical and occupational therapy to maintain function and independence.
- Non-drug treatments: Cognitive behavioural therapy, social interaction, and support for mental wellbeing.
How do I access an OT?
Accessing occupational therapy services can make a significant difference in managing the symptoms of Parkinson’s, improving quality of life and maintaining independence.
It’s advisable to explore all available pathways to find the support that best suits your individual needs. Look to:
- getting a GP referral to an OT with Parkinson‘s experience
- your state-based Parkinson’s organisation for advice on OTs to access
- private health to see what is covered in relation to OT consultations and expenses
- NDIS or My Aged Care plan supports.
Infosheet kindly reviewed by Occupational Therapy Australia
Australia’s professional association and peak body for occupational therapy, Occupational Therapy Australia (OTA) fosters evidence-based practice, enables lifelong learning and promotes the future of occupational therapy. OTA exists to support occupational therapists to support their community. To find an OT go to: www.otaus.com.au
References:
(1) Gupta, Parul, Neha Jain, and S. K. Meena. “Enhancing Quality of Life in Parkinson’s Disease: A Systematic Review of Occupational Therapy Interventions on Balance and Reaction Time.” Journal of Complementary and Alternative Medical Research 23, no. 4 (2023): 24-32.
(2) Sturkenboom, I. H., M. J. Graff, J. C. Hendriks, Y. Veenhuizen, M. Munneke, and B. R. Bloem. “Occupational Therapy for Patients with Parkinson’s Disease.” 50 Studies Every Occupational Therapist Should Know (2023): 59.
(3) ParkinsonNet Occupational therapy guidelines www.parkinsonnet.com/guidelines
