A great deal of literature has been written about the physical impact of Parkinson’s disease (PD), but little information addresses the significant emotional impact of the disease. Many patients with PD experience behavioral health symptoms including depression, anxiety, hallucinations and insomnia. Problems with sleep, mood and slowed thinking are also common. Patients with PD often have challenges with falling and getting adequate sleep which may be related to anxiety, depression or physical restlessness. In addition, challenges with sleep often occur because the individual has difficulty turning over or changing position in bed.
Depression is quite common in patients with Parkinson’s disease. It may be caused by chemical changes in the brain as well as by a reaction to having a progressive and at times, debilitating disease. The individual is coping with the gradual loss of abilities that accompanies the progression of Parkinson’s disease. Depression can also contribute to poor concentration and confusion. Parkinson’s often slows the patient’s thought process affecting their ability to communicate ideas and feelings. As many as one third of people with Parkinson’s disease develop more permanent confusion related to dementia.
A patient with PD struggles with the gradual loss of independence. As the person becomes more reliant on their spouse or partner, children and other caregivers for help and these feelings of dependence are often demonstrated through mood irritability, frustration or sadness. Often the PD patient feels guilty about how their illness impacts the other important people in their lives.
The Parkinson’s decline often includes symptoms of apathy. Family and friends may interpret this to mean that the person with PD does not care about things or seems indifferent. The apathy or indifference is often more difficult to treat and may remain even with pharmacological intervention. As the disease advances, often symptoms of lethargy and fatigue also occur.
As the disease progresses, the patient may slowly become more dependent, fearful, indecisive and passive. They may talk less often, withdraw from family and friends and become less active even when encouraged to move about. They may feel lonely as they isolate themselves and as friends become more distant.
We have begun to understand that Parkinson’s disease has a significant emotional impact on the patient with the disease, but it also greatly affects the family. Often the impact of the disease creates substantial stress between the primary caregiver and the PD patient. Regularly, the primary caregiver reports feeling the PD patient isn’t trying hard enough to fight the physiological symptoms.
How can the patient with PD and their family better manage the emotional effects of Parkinson’s disease? The person with PD will often have success with antidepressant medication intervention. More often than not, adding in addition counseling and support groups are relatively helpful for both the patient with PD and the spouse or family member. At times, individual therapy feels most comfortable initially. Bringing the couple or family together later in the process can help open the lines of communication and allow everyone affected to begin to understand each person’s needs and feelings in order to reduce mounting anger and frustration.
There are also a few impressions that can help the family better understand the emotional effects of the disease. Often the PD patient will want to please the spouse and try harder. In addition, the patient may agree to make changes but then forgets due to thought slowing and short-term memory loss. The family and caregivers need to recognize that the PD patient’s apathy and slowed thought processes may interfere with their ability to take action and effectively make long term changes in their behavior.
Dr. Joseph Friedman wrote in his book, Brain and Behavior: Coping with Parkinson’s Disease, that at least half of PD patients report fatigue as their biggest problem. The challenge is that fatigue is often hard to measure, develops over time and can be difficult to treat. Nonetheless, it involves the caregiver intervening and urging exercise as well as working with their doctor to prescribe medication to help with sleep. He describes that many people lose motivation to perform routine tasks and their interest in things they enjoy and the people around them may wane. Often anhedonia occurs as interest may decrease in previously enjoyed hobbies.
D r. Friedman explains the apathy challenge. Apathy in PD can negatively affect the person’s motivation. On the other hand, it is often it is more apparent and more distressing to the spouse, care partner and family. Some argue that it is protective to the patient as it functions in place of sadness, worry and distress.
The caregiver and family are significantly emotionally impacted by the disease, yet a critical piece often overlooked. Caregivers struggle with frustration, social isolation and depression. They can benefit from encouragement to attend support groups, taking respite and care breaks and seeking therapy for themselves. Addressing both the Parkinson’s patient as well as the family is vital to family wellness and emotional health.
Parkinson’s disease is an intense disease, requires a great deal of energy, and can greatly increase one’s stress level. Both the patient with Parkinson’s as well as their family members will more effectively manage the disease when we recognize their individual and collective needs for extra support.
Lori N. Waldberg, LCSW
Behavioral Health Specialists at
Banner Sun Health Research Institute
bhspecialists@aol.com
602-570-6788
Lori Waldberg is a Licensed Clinical Social Worker who has spent more than eighteen years specializing in working with adult and senior clients experiencing emotional, cognitive, behavioral and substance abuse problems. Lori is a well-known speaker who provides training and education to professionals and caregivers on topics relating to memory changes, mental health, movement disorders and behavioral issues in adults and families. Lori provides behavioral health and dementia care consultation for hospitals, outpatient programs and agencies, home care and long-term care providers. Lori offers a private practice providing supportive therapy and behavior management for individuals and families coping with loss, mental health, cognitive and physical disorders out of Banner Sun Health Research Institute in the West valley and In-home therapy in Northeast Phoenix and Scottsdale
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