Parkinson's Disease Dementia: An Important Conversation

Many people with Parkinson’s disease (PD) experience some degree of cognitive change, such as slowness of memory, changes in thinking, trouble focusing or difficulty finding words. Dementia is a permanent cognitive change that interferes with daily activities and quality of life. Identifying thinking changes early and discussing them with your doctor are the first steps in treating or ruling out PD-related dementia.

This article is based on a Parkinson’s Foundation Expert Briefing Let’s Talk About Dementia presented by Dr. James Leverenz, Director, Lou Ruvo Center for Brain Health at Cleveland Clinic, a Parkinson’s Foundation Center of Excellence.

Slowed movement, tremor and stiffness are some of the visible movement signs of Parkinson’s disease. Though not visible, the impact of non-movement symptoms can be even more challenging for people with PD and their loved ones — this includes issues with thinking and memory. While PD-related cognitive change can be mild, between 60 to 80% of people living with PD for 15 years or more can experience disease-related dementia. Awareness of thinking changes can ensure early treatment.

Lewy Body Dementias

In Parkinson’s, the protein alpha-synuclein misfolds and forms

Parkinson’s Disease Dementia: An Important Conversation clusters in the brain called Lewy bodies. These sticky clusters upset normal brain function. Lewy bodies are strongly linked to PD and dementia. Nearly 1.5 million Americans are impacted by Lewy body dementias, including those living with: n Parkinson’s disease dementia (PDD): diagnosed when significant cognitive decline occurs in someone living with Parkinson’s movement symptoms for a year or more (usually several years). n Dementia with Lewy bodies (DLB): diagnosed when cognitive decline occurs before or at the same time as motor symptoms. Almost 50% of people with Alzheimer’s disease also have some Lewy body brain abnormalities. These are frequently seen in both people who live with sporadic and familial forms of Alzheimer’s. When these changes go beyond a part of the brain called the amygdala, people often have some of the same symptoms as people living with dementia with Lewy bodies , frequently developing Parkinson’s-like motor symptoms. This is known as the Lewy body variant of Alzheimer disease. Some researchers theorize that Alzheimer’s disease may drive

clumping of Lewy bodies. New therapies designed to slow Alzheimer’s progression could also hold possibility to slow Lewy body development — another reason for the importance of an early and correct diagnosis, and early treatment.

Dementia Signs and Symptoms

In addition to memory, thinking and behavior changes, other symptoms include:

n apathy n depression n poor insight n executive dysfunction n visual-spatial difficulties n disruptive agitation n psychosis (hallucinations and delusions)

Despite many shared symptoms across Lewy body dementia diseases, people often store and recall information differently, depending on which cognitive disorder they are living with.

Adding and retaining new memories is often difficult for people living with Alzheimer’s disease. It may be challenging for someone with Alzheimer’s to remember a question or conversation just minutes after, or they may have forgotten events from the previous day. Encoding new information can be an issue. However, if a person experiencing PD thinking changes struggles retrieving a memory, they can often pull it up with a clue or a reminder.

This means people with PD dementia can store memories. Rather than primary encoding difficulty, they often experience retrieval challenges — an executive dysfunction similar to difficulty multitasking or staying on track during conversations.

People with Alzheimer’s disease tend to have less awareness that they are hallucinating. A person with PD dementia or dementia with Lewy bodies can more often recognize that they are experiencing hallucinations. It’s important for the care provider to ask the person experiencing changes “Do you see things?” People with PD-related dementia will often acknowledge that they do see things, are aware the hallucinations are not real and are not bothered by what they see.

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Alcoholics Anonymous 800-477-1104 Alzheimer’s Association 800-272-3900 American Cancer Society 800-227-2345 American Council of the Blind 800-424-8666 American Diabetes Association 800-342-2383 American Heart Association 800-242-8721 American Kidney Fund 800-638-8299 American Liver Foundation 800-465-4837 American Lung Association 800-586-4872 American Parkinson Disease Association 800-223-2732 American Speech Language & Hearing Association 800-638-8255 American Stroke Association 800-553-6321 Arthritis Foundation 800-283-7800 Asthma and Allergy Foundation of America National 800-727-8462 Center for Disease Control 800-232-4636 Easter Seals Society 800-221-6827 Elder Care Location Nationwide 800-677-1116 Huntington’s Disease Society of America 800-345-4372 Leukemia and Lymphoma Society 800-286-8159 Lupus Foundation of America 800-558-0121 Muscular Dystrophy Association (Life Line) 800-572-1717 National Council on Aging 800-424-9046 National Kidney Foundation 800-622-9010 National Multiple Sclerosis Society 800-344-4867 National Osteoporosis Foundation 800-223-9994 Senior Corp (opt 4) 800-942-2677 Sight & Hearing Association 800-992-0424 United Ostomy Association 800-826-0826