In some cases, people with Parkinson’s may experience the added symptom of dementia with their Parkinson’s diagnosis. A broad spectrum of potential thinking and memory changes can occur in people with Parkinson's disease, including slowed thought processes, forgetfulness, confusion about routine tasks, lack of judgment, compulsive behaviors, paranoia, anxiety, and personality changes.
Some people with advanced Parkinson's disease experience more profound changes in thinking (dementia). It is important to acknowledge and adapt these changes even though they can be frustrating and frightening for both the person with Parkinson's and the family. Promptly report any new or sudden changes in thinking or behavior to the healthcare team.
Below are some general tips for the care partner to help with communication with our loved ones for an improved environment.
A smile and pleasant manner can invite cooperation
Speak at eye level and maintain eye contact
Use the same cues each time to provide instructions. Teach these cues to anyone who provides care.
Do not leave someone with thinking changes or dementia alone. Lack of judgment and/or impulse behaviors can create a dangerous situation
Try using humor to diffuse a stressful situation, but avoid using negative humor or sarcastic remarks, which may be misinterpreted
Ask one question at a time
Give the person with Parkinson's time to respond to a question before assuming that he or she does not care to answer. Try counting to 10 before asking the question again
Ask either/or questions instead of open-ended questions. For example, instead of asking "What do you want to wear today?" ask, "Do you want to wear the red shirt or the blue shirt?"
Try giving a one-or two word hint if the person with Parkinson's has difficulty finding a word or loses his or her train of thought.
Use short, simple phrases to provide cues. Avoid using too many words when providing direction.
Forgetfulness and Confusion
Cross days off on the calendar
Keep frequently needed items in a consistent place
Note the daily schedule or special event for the day on a chalk or white board. Place a clock near the board as a reference for the written schedule
Use simple remote controls or cover unnecessary buttons with tape to decrease confusion
Limit distractions as you try to accomplish the daily routine. For example, turn off the TV and radio during dressing and eating
Hallucinations may occur with disease progression or as a side effect of Parkinson's medications. The term "hallucination" means that someone sees, hears, or feels something that is not physically present. It is not a dream or nightmare but occurs when the person is awake at any time of the day or night. Hallucinations can be bothersome or frightening and should be reported to the medical team.
Acknowledge your loved one's experience. It is ok to say you understand they see something, but you do not see it.
Try not to argue with the person with Parkinson's.
Make sure that any medication prescribed for hallucinations is an "atypical antipsychotic" (does not block dopamine).
Ask your doctor about new, FDA Approved medications for Parkinson’s hallucinations as an option in treatment
Behavior and Personality Changes
The person with Parkinson's may experience changes in personality, becoming anxious, moody, irritable, or aggressive, even if they were not like this before. Some people develop a paranoia (an extreme distrust or suspicion that is not based on reality). At times, they may say or do things that can be hurtful to you as a care partner. It is extremely difficult to understand and accept this new person. This may cause you to feel sadness, stress, anxiety, and depression.
Try to avoid confrontations. It is not usually helpful to try to reason or tell the person with Parkinson's that he or she is wrong.
Change the subject or distract the person with Parkinson's with another activity. It may be helpful to use a familiar activity that represents your loved one's past experiences. For example, an office worker may like to sit at a desk, sort papers, use a calculator or perform other tasks reminiscent of a past life.
Try not to get angry or take behavior changes personally. The person with Parkinson's is not acting out on purpose.
Speak in reassuring tones.
Consider what may be causing the behavior. The person may be hungry, thirsty, tired, in pain, frustrated, lonely or bored.
As a care partner, you play an important role in the quality of life of the person with Parkinson's. Here are some tips to help you manage day-to-day life with someone with dementia:
A smile and pleasant manner can invite cooperation
Do not leave someone with dementia alone. Lack of judgement and/or impulsive behaviors can create a dangerous situation
Use exercise, diet, and rest to keep your loved one as healthy as possible
Give medication on time as prescribed by the doctor
Create and follow a routine
Make a list of important phone numbers, and keep a copy with you in case of emergencies
Keep written track of appointments, tasks, and medication schedules
Stay calm and be patient
Speak slowly and use simple sentences to communicate
Ask one question at a time and wait for an answer. Use either/or questions instead of open-ended questions. Instead of asking "What would you like for lunch?" try asking, "Would you like soup or a sandwich for lunch?"
Limit distractions as you try to accomplish the daily routine. Make sure to turn the TV or radio off before asking the person to do something.
Try not to argue. It is usually not helpful to try to reason or tell the person with Parkinson's dementia that he or she is wrong.
Consider what may be causing a disruptive behavior. The person may be hungry, thirsty, tired, in pain, frustrated, lonely or bored.
If the person seems to be stuck on an idea (e.g., "I have to get dressed for work,"), try agreeing with her and then distracting her with something else.
Parkinson's Foundation. Page 151. Thinking Changes and Dementia. Chapter 6. Advanced Parkinson's. Caring and Coping. A Care Partner's Guide to Parkinson's Disease. "Booklet."