MyParkinsonsTeam sometimes conducts surveys on topics of interest to our more than 99,000 members, inviting them to weigh in about their experiences. Most recently, we surveyed members who take care of their loved ones with Parkinson’s about how caregiving has affected their lives.
Below, we share the survey results so our community can hear each other’s voices and learn, collectively, about how caring for a loved one with Parkinson’s affects quality of life.
The survey was answered by 269 MyParkinsonsTeam members living in the United States who identified themselves as caregivers. Nearly all (96 percent) are caring for a spouse with Parkinson’s. Most (88 percent) said they’re the primary caregiver for their loved one.
The survey questions covered:
Here’s a breakdown of what MyParkinsonsTeam members had to say on these topics.
Caregivers take on many responsibilities. Among the most commonly reported by caregivers surveyed on MyParkinsonsTeam included accompanying their loved one to doctors’ appointments (94 percent) and offering emotional support (93 percent). Most respondents also reported performing household chores (85 percent) and running errands (81 percent).
Many caregivers are directly involved in helping manage Parkinson’s care, with more than 70 percent helping their loved one take medication and almost half (46 percent) helping with physical therapy.
The burdens borne by caregivers take many forms. MyParkinsonsTeam members shared a range of ways caring for a loved one has affected their lives.
Survey respondents shared the emotional challenges of caring for a loved one. Eighty-eight percent reported that it’s stressful to watch their loved one’s health decline, and 86 percent said caregiving is emotionally challenging.
The demands of caregiving make it harder to find time to unwind and manage the stress. Seventy-one percent of caregivers reported they have less time for themselves.
Apart from emotional hardships, caregiving for a loved one with Parkinson’s also makes it more difficult to find time for other family members, as 43 percent of respondents reported. Nearly half of caregivers who responded (47 percent) reported that their caregiving duties resulted in negative effects on their own health.
“The hardest part is simultaneously taking care of the person with needs and yourself, so you don’t get sick,” one member explained.
Despite the challenges of caring for a loved one with Parkinson’s disease, 55 percent reported that they find some positives in caring for their loved one. Forty-five percent said they find the responsibility rewarding, while 36 percent reported that caregiving has brought them closer to their loved one.
Many other MyParkinsonsTeam members who care for a spouse have shared similar thoughts. “It can be a positive journey,” shared one member. “My husband and I have become very close, met lots of beautiful people, and have a love that we really never had before.”
“Being a caregiver has enhanced our relationship more than I ever could imagine,” said another member.
A third wrote, “Together this journey will only make us stronger.”
MyParkinsonsTeam is the social network for people living or caring for someone with Parkinson’s disease. On MyParkinsonsTeam, more than 99,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s.
Do you help care for someone with Parkinson’s? How has it changed your life? What advice do you have for others? Describe your experience in the comments below, or start a conversation by posting on your Activities page.