MOTIVATION AND INITIATIVE IN PARKINSON’S DISEASE

by London C. Butterfield, M.A.                                      http://www.CPANCF.COM

Psychological Intern, Clinical Psychology Associates of North Central Florida All rights reserved                                                                       Revised 10/29/12, 08/04/23

This article discusses an intervention, the Parkinson’s Active Living program, to target apathy and difficulties in motivation and difficulties in initiation in Parkinson’s Disease (PD) and other frontal-subcortical disorders.

Click the following link for .pdf version of Motivation and Initiative in Parkinson's Disease.pdf

While Alzheimer's Disease is the most common neurodegenerative disorder, Parkinson's Disease is the second most common, impacting 4% of individuals over the age of 60. Parkinson’s Disease (PD) affects 600,000 to 1 million people in the United States alone. The disease is named after a British physician, James Parkinson who published a descriptive essay in 1817. It is usually recognized by prominent motor symptoms such as tremors, slowness of movement (bradykinesia), rigidity, and difficulties with stable posture and walking. Cognitive deficits often include executive function problems such as slowness of thinking, difficulties shifting strategies or mental set, organizational and planning difficulties and difficulties in imitating or inhibiting actions. Some individuals will experience memory difficulties. Individuals may present with apathy and difficulties with motivation.

What is apathy?

Apathy is one of the most common symptoms in individuals with damage or disease affecting the frontal-subcortical circuits of the brain. The term apathy may be defined somewhat differently in the neuropsychiatric and neurologic literature than you might expect. Individuals with elevated apathy demonstrate a reduction in self-initiation and/or motivation.

While motor dysfunction is most apparent in PD, apathy is one of the most common neuropsychiatric symptoms in PD, with an average estimated prevalence of 40-45%. Apathy is described in the neurologic literature as a reduction in self-initiation and motivation. Individuals may report that their “get up and go has gone up and went” or that they are less interested or less able to engage in activities. Elevated apathy has been associated with a host of negative consequences, including cognitive impairment, poor daily functioning, poor treatment compliance and illness outcome, and reduced quality of life. Further, this often results in increased burden and/or distress for spouses or caregivers. 

Here are some examples of apathy as it presents in Parkinson’s Disease and in other neurologic conditions:

• Difficulty with initiating activity or in learning new things
• Low activity levels
• Low motivation
• Lack of interest in socializing
• Lack of concern for issues that would have been important to you in the past
• Lack of effort or reduced productivity
• Not completing tasks that you have started
• Needing someone else to remind you or prompt you to do things.

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  Why does apathy matter?

About 40-45% of persons diagnosed with Parkinson’s Disease have unusually high levels of apathy.  Apathy is associated with many undesirable things and can even result in negative consequences for persons with PD or for their spouses, family members, or caregivers.

Some of the things that elevated apathy has been associated with include:

• Cognitive decline
• Impairment in occupational functioning and daily functioning
• Reduced community and social participation
• Treatment compliance
• Poor illness outcome
• Poor general health
• Caregiver depression
• Caregiver stress and burden

Many caregivers, spouses, or family members of apathetic PD patients misinterpret their loved one’s apathy as depression, laziness, or stubbornness. Knowing about apathy can help loved ones recognize that apathy is a part of the disease process and does not necessarily reflect that the patient is depressed, lazy, or stubborn. Rather, they may simply have a difficult time initiating behavior, emotion, or thought content.

Link to Caregiver Resources from our NeuropsychologyCentral.com website.

What is the purpose of the Parkinson’s Active Living (PAL) intervention program?

 Since apathy can affect PD patients in undesirable ways and can impact their caregivers, spouses, or family members, there is increasing interest in identifying treatments for apathy. Since many individuals wish to avoid dependence on an increased number of daily medications and due to the unwanted side effects of some medications, there is particular interest in learning behavioral, medication-free ways to improve their motivation and self-initiative.

The PAL research program was developed in an attempt to help persons with Parkinson's Disease to overcome their apathy through increased activity. We have incorporated several aspects that are developed out of the existing mood and motivation literature as well as the PD literature. For instance, goal setting is known to improve motivation in most people. In addition, PD patients generally benefit from the provision of external cues. We have included several factors to create external structure and external cues that will increase the likelihood for an effective program. Activity engagement is known to benefit physical, mental, and emotional health.