Parkinson's Disease with Dementia -
Special Challenges

In the U.S. today there are more than one million people with Parkinson’s Disease (PD). Approximately 50,000 new cases are diagnosed annually. PD is a progressive movement disorder that affects the central nervous system. Its causes are unknown, and while physicians can manage some symptoms of the disease, there is no known cure.

Primarily individuals over the age of 60 are most at risk for developing PD, although cases as young as 30 years old have been diagnosed (juvenile PD). For some patients, however, hallucinations and severe uncontrollable muscle difficulties make them especially vulnerable for dementia as PD progresses.

Dementia has been defined as cognitive impairments that are sufficient to interfere with activities of daily living. Dementia worsens over time, with cognitive processing declining each year faster than that of the general population. Most people think of Alzheimer’s disease when dementia is mentioned, although there are many types of dementia with various causes.

Estimates are that 20 – 30 percent of the patients with PD will develop dementia, generally after age 70. If it is going to develop, there is generally a 10 to 15 year lag from the time that motor difficulties appear with PD. If symptoms of dementia appear earlier, experts suggest that the cause could be something other than PD.

Signs of Dementia:

Before discussing possible causes of dementia, it would be helpful to explore what signs or symptoms the PD patient may experience. Dementia will first be noticed at home, not in the doctor’s office, even if you don’t have a name to put with it. Since caregivers are with their loved ones more often than doctors, it is helpful to bring any changes in behavior to the doctor’s attention.

Some of the most common signs of dementia in PD include:

Memory recall and processing

Impaired thinking, often at a much slower rate

Apathy or lack of motivation

Moodiness

Confusion and disorientation

Easily distracted

Keep a diary of signs as they develop and schedule an appointment with your physician to discuss them. It would also be helpful to note how often symptoms appear and even the circumstances when they were first noticed. Giving your doctor enough information to make a determination is the first step in making the correct diagnosis.

Remember that if someone is going to develop dementia, there is generally a “lag” of at least 10 to 15 years. If dementia develops earlier, it is important to take note of the symptoms and discuss them with your physician. Correctly diagnosing the cause will make treatment and adjustments much easier. Some signs that the dementia is caused by something other than Parkinson’s disease include: anxiety, restlessness, and even delusions (irrational thought processes). Speech or language difficulties are also a signal that the dementia is not caused by Parkinson’s.

Finally, depression can mimic the signs of dementia in Parkinson’s patients. Depression is a common companion to PD, and having your loved one fully evaluated can aid in their recovery from these troublesome symptoms if depression is the underlying cause. Medications to treat depression can bring relief and can even improve memory and mood. 

Lewy Bodies and their Role in Dementia:

In patients who develop dementia, Lewy bodies are usually present. Lewy bodies are protein deposits on the nerve cells. Scientists haven’t determined yet if the Lewy bodies play a role in killing the cells or if the cells, in the process of dying, are more susceptible to developing the protein deposits. Perhaps even the Lewy bodies develop as a method to repair the cell, and instead play a role in developing dementia.

Dopamine is the neurotransmitter involved in regulating movement. In Parkinson’s patients, the ability to regulate the amount of dopamine is damaged. For this reason, medications such as Levodopa, try to increase the amount of dopamine in the brain, thus helping the movement issues with Parkinson’s. Lewy bodies generally damage not just dopamine, but other neurotransmitters as well. By impairing movement and thought processes, the person with Parkinson’s demonstrates the symptoms of dementia: unable to process new information, blankly staring off into space, unable to recall specific incidences, and inability to make sound judgments. There are other symptoms as well, depending on the area of the brain that is damaged.

Medication-induced Dementia:

In some patients, the type of medication that they are taking can induce the symptoms of dementia. Regardless of the cause, your doctor needs to be involved as soon as symptoms are noted in the patient. By adjusting medications, your physician may be able to detect whether or not Lewy bodies are to blame or if the medication is actually causing the problem. Dementia is not a normal process of PD; and in the cases of medication inducing the dementia, it can be reversed.

Vascular Dementia:

Although not common in Parkinson’s, it is possible to have vascular dementia. Vascular dementia generally develops when there are small, unnoticed strokes. By determining if vascular dementia is indeed present, doctors can sometimes halt the advancement by treating the underlying causes. Further tests will be needed to find out if these strokes have occurred and what the underlying cause of the stroke was. By stabilizing the patient’s vascular health, you can greatly improve chances of improving vascular dementia.

Changes in Daily Living:

Finding out that your loved one had Parkinson’s was difficult enough. Adjusting to dementia can significantly add to stress. Remember not only to consider the person with Parkinson’s and how their life is affected, but it is especially important to reduce caregiver stress during this adjustment. In order to make a successful transition, you’ll need to make changes to daily routines. This requires not only cooperation from the patient, but the caregiver as well.

Avoid open-ended questions such as “What would you like to eat?” Since thought processing is affected, the patient may feel frustrated when they are unable to name something specific that they like to eat. Offer choices: “Would you like chicken or pork chops?” Give a limited number of choices so the person can name what they want without too many options.

Establish schedules and stick to them. Lists of activities may help. For example, next to the bed may be a list that reads:

Wake up
Put on slippers
Put on robe

By breaking down the daily routine into small, manageable steps, you can avoid frustration from the patient and the caregiver perspective. Both people know what to expect and in what order you need to do the steps.
Remember that as the dementia worsens over time, you may need to develop lists with more specific steps. For example, the first list may have said, “Brush your teeth.”

The new list may read:
Open toothpaste
Get toothbrush
Put toothpaste on toothbrush
Brush teeth
Rinse

If you think your loved one may not be able to remember which medications they need to take, how much they need to take, etc., you may have to lock away medications and dispense doses as needed. This may be an adjustment to the person who was accustomed to independence in taking their medication. Explain the reasons why you need to control medications and that you want the person to be safe. Over time you can make this transition as well.

Keep living environments simple, free of clutter. Clutter in the home can resemble the clutter that the person feels in their thought processes. By keeping the environment free to extraneous objects, you can help decision-making processes go much smoother. Remember too that Parkinson’s will gradually worsen over time, making smooth movements almost impossible. Keeping the home area safe and fall-free will help with this as well

Other ideas that you may want to consider:

Keep travel plans simple. As much as possible, continue  established routines if you need to travel.

Keep dangerous objects, such as knives, out of reach and out of sight. Other objects you may want to put away include ladders, step stools, small appliances that require supervision when in use, and anything else in your home environment that you think would be a danger to your loved one.

Use mental exercises to keep memory as sharp as possible. These include puzzles, card games, reading, listening to music, and even keeping a diary.
Continue a good exercise routine. This not only keeps the movement portion of PD under control, but it can aid in cognitive processing as well.

Keep dressing as simple as possible. Buttons and snaps can be a challenge. Slip-on clothing and even Velcro work well.

Get a wrist or pendant ID for your loved one to wear.  The Alzheimer’s Association can provide one.

Financial Obligations:

Develop a plan for finances and how your loved one’s assets will be used before the dementia develops too much. Scientists have demonstrated that each year the person with dementia loses mental processing at more than twice the rate of a person without dementia. You’ll want to put these arrangements in place as soon as possible. You’ll want to consider:

Preparing a will and keeping it in a safe place.

Consulting a financial planner to decide how assets need to be used, dissolved, or otherwise distributed.

Deciding about long-term care options.

Deciding how bills will be paid on an ongoing basis – especially important if the person with Parkinson’s is not married, is widowed or lives alone (although they may not be able to continue living alone for long).

By making these decisions in advance, you’ll save much stress later as the disease develops further.

Many people with Parkinson’s will not develop dementia. For those patients who do, it is important to learn your medical options and make adjustments to the home environment. Some of these adjustments can transition over time, while others need to be made more quickly. Even with dementia, the person will have good days and days that thought processes are not as sharp. By keeping the lines of communication open with your doctor, the disease can be managed as effectively as possible, despite its debilitating effects on daily living.
 

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