Things To Know as a Caregiver of Someone with Parkinson's

Over six million people have Parkinson's disease (PD) worldwide. Understanding the basics of caregiving for someone with PD and discovering some critical things to know about it and your role as a caregiver will make being a family caregiver easier.
Updated: November 29th, 2022
Mallory Knee

Contributor

Mallory Knee

Parkinson's disease commonly affects seniors, with most people being diagnosed at the age of 60. Around one million people in the United States live with Parkinson's, impacting their families and finances. Most Parkinson's patients receive informal care from family members or close friends. This caregiving involves a lot of work—physically, mentally, and emotionally.

Unfortunately, the majority of family caregivers lack the necessary skills to handle this demanding job, not to mention the difficulty of balancing their careers and families with their caregiving responsibilities. 

Many family members find out too late that health insurance and Medicare won't pay for most of the custodial care (help with everyday living activities) that those with Parkinson's require. Medicaid is not an answer either unless the person with Parkinson's has little or no income and assets. You also cannot purchase Long-Term Care Insurance if you have Parkinson's, but if the individual purchased a policy before being diagnosed, the policy would pay for their care.

Unprepared, Family Becomes Primary Caregivers

Usually, someone from the family will become the primary caregiver. This role is often a daughter, but not always. The term "sandwich generation" comes from those individuals who must care for an older family member while caring for their children and often juggle their careers simultaneously. 

As a caregiver, your role includes specific tasks that enhance the care recipient's life and maximize their well-being. Gaining more clarity on this health issue helps caregivers, partners, and family members of individuals with Parkinson's provide better support. Here are three essential things to know as a caregiver of someone with Parkinson's. 

Understanding Parkinson's

Parkinson's affects one's neurological and movement functions. In the U.S., it's the second leading brain disease, following Alzheimer's. Parkinson's often represents itself as resting tremors and stiffness. Other possible common symptoms include:

  • Imbalance

  • Sleep issues

  • Increased risk of depression

  • Sudden reflexes

  • Slow movements

The symptoms of Parkinson's greatly differ by person, meaning that individual care works best. What works for one person may be of little use to another. As a caregiver, finding treatment that's specifically designed for your patient, partner, or family member ensures they receive the best care possible.

Basic Caregiving Roles

Although the type of support each individual with Parkinson's receives differs, some caregiving roles remain the same. Typically, caregivers are in charge of tasks such as:

  • Managing medication

  • Assisting with hygiene and other daily tasks

  • Providing emotional support and company

  • Providing movement and mobility assistance

  • Providing therapeutic aid

  • Providing transportation

Other parts of your role as a caregiver will depend on the severity of symptoms for the person in your care. Finding ways to improve the quality of life for someone with Parkinson's is also an important part of being a caregiver.

Providing Support

Being a caregiver is just one of the many ways to support someone with Parkinson's. Beyond the crucial role of being a caregiver, you can provide support by spreading awareness and advocating for Parkinson's. Greater awareness of the disease and increased funding for Parkinson's research help professionals find further means of treatment, symptom relief, and early diagnosis. 

Supporting yourself throughout the process also aids the care recipient, allowing you to provide a strong and reliable support system. There are many tips and tricks for Parkinson's caregiving that prioritize the well-being of both the caregiver and the person they help.

Caregiving for someone with Parkinson's comes with a lot of responsibility and different things to know and learn about. Understanding the basics of the caregiving role, Parkinson's, and the various ways to support someone allows you to provide better aid for your family member, partner, or friend.

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