What Does My Future as a Parkinson's Care Partner Look Like?

Life as a caregiver or care partner to someone with Parkinson’s disease (PD) can be tumultuous. PD caregivers may experience fear or uncertainty about the future, or trouble understanding what to expect with their loved one’s PD and its progression.

Additionally, caregivers may feel overwhelmed by all of the potential sources of PD-related information that exist, and what resources or sources of help are the most beneficial.

Overall, the role of caregiver can be one that brings along with it struggles, as well as triumphs, as you and your loved one learn to navigate this new realm. Just as your loved one’s PD is going to be unique from others with the condition, so will your experience as a caregiver.

In order to get a better understanding of the variety of experiences that can come along with being a caregiver to an individual with PD, we reached out to the PD community in our 2018 Parkinson’s Disease in America survey.

Over 1,150 individuals with PD and 515 caregivers to someone with PD participated in the survey, which addressed topics such as diagnosis, quality of life, relationships, symptom management, and more. When it comes to all things related to caregiving, the following trends were found.

What kind of support are caregivers providing?

When asked what kind of support caregivers are providing to those they care for, some of the top answers from caregiver respondents were as follows:

• Proving emotional support (91% of respondents)
• Attending/taking notes during medical appointments (84% of respondents)
• Taking loved one to/from doctor’s or treatment appointments (83% of respondents)
• Being open to talking about concerns or feelings (80% of respondents)
• Helping with household duties (76% of respondents)
• Helping with understanding medical care (75% of respondents)
• Helping to manage finances and bills (74% of respondents)
• Helping to manage or administer medications/treatments (72% of respondents)
• Bringing humor into their loved one’s life (72% of respondents)
• Helping their loved one eat or with food preparation (70% of respondents)

Other sources of support caregivers reported participating in included encouraging their loved one to be an active part of their healthcare team, helping their loved one select a healthcare professional, reminding their loved one that their reactions are normal, helping their loved one find coping or stress management strategies, helping to select treatment plans or medications, helping with personal hygiene, and more.

Caregiver fatigue, distress, and burnout

Taking care of another person during a difficult time in life, including during the progression of PD, can be exhausting and overwhelming at times, especially if you’re not taking care of yourself as well. Becoming fatigued or distressed over being a caregiver, or even feeling a burnout sensation, are all common results of being in this role. Nearly 80% of caregiver respondents reported being under high distress. Within the week prior to completion of the survey, over 50% of caregivers reported that they:

• Felt they couldn’t leave their loved one alone
• Felt completely overwhelmed
• Felt lonely
• Were upset that their loved one had changed so much from their former self
• Felt a loss of privacy and/or personal time
• Had been edgy or irritable
• Had sleep disturbed caring for their loved one

Physical demands of being “on call 24/7” as well as emotional demands like the ones listed above, can make caregiving quite a challenge at times. Despite this, nearly 60% of caregiver respondents reported being satisfied with the support family has provided, and reported that their loved one rarely, if ever, made providing care difficult for them.

Learning more about Parkinson's

A common role fulfilled by PD caregivers is that of a researcher. Often, caregivers help their loved one investigate new treatment options, potential treatment side-effects, and the progression of PD as a whole.

According to survey respondents, those with PD tend to utilize social media, in-person support groups, and other individuals with the condition more for their informational needs, while the individuals caring for those with PD tend to rely on their loved one’s healthcare provider and the Internet for PD-related information.

Additionally, caregivers reported wanting to investigate PD progression and palliative care more than their PD-affected loved ones, who are the most interested in treatments and symptom management.

Overall, the life of a PD caregiver can be challenging and overwhelming at times, with lots of twists and turns. Practicing self-care, finding additional sources of support, and maintaining open lines of communication and expectations with your loved one may help alleviate the fear of the future or caregiver burnout.