Are you a care partner to someone living with Parkinson’s? You are not alone. In fact, PD care partners may have some experiences in common with 43 million other Americans who also help to care for loved ones.
This information was shared last week, when the AARP joined with the National Alliance for Caregiving to report on the state of caregiving in the US. Together the groups reported on results from a nationwide survey which included responses from 1,250 caregivers who specifically care for adults living with a variety of illnesses such as cancer and Alzheimer’s disease.
What did we learn that might be helpful to the Parkinson’s community?
PD Caregivers Are Not Alone
Overall, we saw that caregiving trends in these various disease areas – who caregivers are, what they do and their biggest concerns – are very similar to Parkinson’s disease.
First, more than half of caregivers surveyed were women. This is similar to our finding in 2006, in which 80 percent of PD care partners were women.
Second, the trends reported about the caregiver experience mirror those we see in the PD community. For example, many caregivers in this survey reported high levels of stress and the need for guidance from professionals on how to care for themselves. In addition, 42 percent reported that in addition to helping loved ones with day-to-day activities (bathing, dressing, eating), they also increasingly perform tasks typically done by nurses, for which they are not properly trained.
When we look back at PDF’s caregiver survey and to recent data collected by the PDF HelpLine team, we see similar trends – more than half of our respondents reported their environment as very or highly stressful and more than half reported needing more help in caregiving.
Supporting PD Care Partners: PDF Resources
These two reports drive home important messages. First, when a person is diagnosed with PD, the disease affects many others, especially the care partner. Second, those care partners need our support.
PDF is committed to providing resources to help PD care partners so they can stay healthy themselves and provide the best care for their partners.
What can you do if you’re a care partner or if you know one?
- First, let them know about our HelpLine, which is available Monday through Friday, from 9:00 AM to 5:00 PM ET at (800) 457-6676 or firstname.lastname@example.org. Our team can provide advice, resources and links to local support groups.
- Second, let them know about our free print and online educational materials, including six webinars designed just for PD care partners. We have included a sampling below. These and others can be found on our website or by contacting the PDF HelpLine.
Do the findings above surprise you, or are they similar to your experience? Please share your experiences below and join us in supporting PD care partners.
Sample Resources for Care Partners
- Caregiving and Parkinson’s: Laying the Groundwork for the Road Ahead
This webinar led by a nurse and caregiver provides tips for planning ahead.
- Coping Skills for Parkinson’s Care Partners
This webinar focuses on how a care partner can take care of themselves.
- The PD Partnership
This fact sheet provides tips for people with PD and their care partners.