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
Confusion and disorientation
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
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
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
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:
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:
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.
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
to our weekly e-newsletter