Parkinson’s Disease Dementia

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KEY POINTS

• Parkinson's disease is a movement disorder caused by a problem in the brain. Parkinson's disease dementia (PDD) is a gradual loss of the ability to think, remember, reason, and plan that happens after you are diagnosed with Parkinson’s disease.
• There is no cure for PDD. Medicines may slow down the loss of memory and function.
• Talk with your healthcare provider about help at home or about adult day care centers, mental health services, and nursing facilities.

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What is PDD?

Parkinson's disease is a movement disorder caused by a problem in the brain. Parkinson's disease dementia (PDD) is a gradual loss of the ability to think, remember, reason, and plan that may happen 1 year or more after you are diagnosed with Parkinson’s disease.

What is the cause?

Parkinson's disease happens when nerve cells in the brain stop making an important chemical called dopamine. Without enough dopamine, the brain cells that control movement do not work properly. You lose the ability to control muscle movements. When brain cells stop working correctly, they may also lose the ability to store memories or process information. As Parkinson’s disease gets worse, more brain function may be lost.

If you have Parkinson’s disease, you are more at risk for PDD if:

• You are over the age of 65
• You have had Parkinson’s for a long time
• You have had a serious head injury
• Someone in your family had dementia

Depression and medicines to treat Parkinson’s disease may also cause some symptoms of dementia.

What are the symptoms?

PDD symptoms may include:

• Memory problems, such as trouble remembering recent events, people, places, times, or dates
• Poor judgment and not being able to understand the results of some actions
• Decline in problem solving and the ability to think things through (for example, not being able to figure out the correct order in which to put clothing on)
• Trouble following instructions or staying with a task, which causes problems paying bills, fixing meals, shopping, or taking medicines
• Lack of emotions, lack of interest in what is going on, losing interest in activities previously enjoyed, or withdrawal from other people
• Loss of appetite or interest in food
• Less concern about looking neat and being clean
• Irritability
• Believing things that things are not true when they really are, such as thinking that family members are not who they say they are

As the disease gets worse, it causes problems such as:

• Being unable to control bowels or bladder
• Forgetting how to feed yourself or having trouble chewing and swallowing
• Having a hard time speaking and thinking of the right words and eventually becoming unable to speak
• Not recognizing close friends and family members

How is it diagnosed?

The healthcare provider will do a physical exam and tests to check concentration, memory, understanding, and decision making. You may have tests or scans to check for other possible causes of your symptoms. Tests may include:

• Blood tests
• EEG (electroencephalogram), which measures and records the electrical activity in the brain
• CT scan, which uses X-rays and a computer to show detailed pictures of the brain
• MRI, which uses a strong magnetic field and radio waves to show detailed pictures of the brain

How is it treated?

Some Parkinson’s medicines can make the symptoms of PDD worse. However, without those medicines, Parkinson’s movement problems may not be well controlled. There are medicines that may help slow down the loss of memory and function, but the medicines do not cure PDD. Talk to your healthcare provider about the risks and benefits, and how best to manage medicines for your symptoms.

There is no cure for PDD. It usually gets worse over time. Your healthcare provider can explain more about what to expect. You may need to make changes in the home and in family routines to keep the person with PDD safe. You may need to provide care at home, or the person may need to live in a facility where he or she can get special care.

How can I help take care of someone with PDD?

If possible, involve the person in decisions about the care they need or want to have. A durable power of attorney for medical and financial matters should be signed while they are able to make decisions. If desired, a living will should be made out as well. Ask the healthcare provider for information about these documents in your state.

The prospect of living a long time with the need for caregiving may feel overwhelming. Caregivers may get emotionally and physically worn out if they have no help or no time for themselves. Support groups for caregivers, family, and friends provide emotional support and help you learn about the disease. Talking with other people who face the same challenges can help.

Community resources are very important. For example:

• Social workers can find and organize help, including financial aid.
• Home healthcare agencies provide nurses, medical social workers, health aides, and therapists to help with care.
• Training programs can help family and friends who care for a person with PDD.
• Out-of-home services include adult day care centers, mental health services, assisted living, and nursing facilities.

To find out about these services, talk with the healthcare provider, county health department, or visiting nurses association.