Caregiver’s Role in Caring for People with Parkinson’s

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As a caregiver or care partner, you may be the spouse, sibling, child, or other loved one of someone with Parkinson’s disease (PD). Caregiving is defined as everything we do to assist a friend or relative due to that person’s illness or disability, as well as what we do for our own health. While PD is unexpected and you didn’t choose the role of caregiver, it doesn’t mean you can’t be good at it. Take stock of your natural strengths and how they can be used in caregiving.1

Preparing for your role as caregiver

Your role as a caregiver will change as your loved one’s disease progresses. People with late stage PD need more assistance with everyday activities than those in early stages of the disease. Learn about the disease and how it progresses to create a plan for care, including what outside assistance you may need and when. While learning about PD, remember that each person has their own unique experience, and not everyone experiences every symptom.2

Facing challenges

There are a variety of challenges caregivers face, including financial, health, and emotional. The caregiver is often the health care advocate for their loved one, manages medications and scheduling, and assists with daily care, like hygiene and getting dressed. In addition, the caregiver provides emotional support for their loved one, as they deal with living with a chronic, progressive disease.3

The progression of caregiving in PD

The role of the caregiver in Parkinson’s disease (PD) is ever changing, with the demands increasing as the disease progresses and symptoms worsen. In the early stages of the disease, caregivers are helping their loved one cope with the diagnosis and learning how to manage the medications. Caregivers may encourage and support their loved one in completing daily physical therapy exercises and assist them due to their slowness in movement.4

As an individual’s disease progresses into mid-stage, the caregiver’s duties and burden significantly increase. Fatigue and excessive daytime sleepiness may derail daily plans, and frustrations around communication increase.1

In the late stage of PD, caregivers face significant responsibility and challenges. Their loved one may have significant mobility impairments, and caregivers often provide much hands-on assistance. Many people with late stage PD experience freezing episodes, sudden but temporary inability to move. Freezing episodes can contribute to falls, and fall prevention is important in the late stage of PD. Many assistive devices are available to help people with late stage PD with eating, dressing, and walking. Late stage PD may also mean changes to the way a person thinks, including forgetfulness, confusion, and sometimes, dementia. It is important to remember that not everyone experiences all the symptoms of PD, and the role of the caregiver will also vary based on the needs of their loved one.1

Care for the caregiver

Research has shown that as PD progresses, the strain on the care partner or caregiver also increases. While the caregiver is generally focused on providing assistance and support to the person with Parkinson’s disease (PD), the caregiver also needs support. Taking time away from caregiving duties, maintaining social connections, and asking for help from others are important steps to help the caregiver cope with their additional responsibilities and stress.1,4