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Care Partner Needs: Survey Results

A survey of care partners to people with Parkinson’s disease (PD) illustrates the challenges that this population faces and the need for comprehensive programs and services to address their needs.

As the population of the United States ages, the incidence of Parkinson’s is expected to increase.  This will affect the number of people needed to care for people living with PD.  The needs of PD care partners are poorly understood and often overlooked.  

So, in 2006, the Parkinson’s Disease Foundation (PDF) undertook a survey of care partners to people with Parkinson’s to better understand and address the needs of this growing population.  PDF developed a 53-question survey which was available through several online locations, including the PDF website, www.pdf.org, during the spring of 2006.  

1,001 care partners - 81 percent female and 19 percent male – responded and the results shed light on the needs of care partners to people with Parkinson’s.

Results:

Of the 1,001 care partners who responded:

  • 76 percent were between the ages of 45 and 74.  
  • 63 percent were caring for their spouses.
  • 27 percent were caring for a parent.  
  • 69 percent have provided care for one to six years.

Care partners reported on their responsibilities:

  • 45 percent provide care for more than five hours a day.
  • 78 percent spend time interacting with health care professionals.
  • 90 percent help to manage difficult PD symptoms.

Care partners told us about the demands that impact their lives:

  • 65 percent are concerned about finances.
  • 71 percent say they cannot take time for themselves.
  • 55 percent say they need help giving care at times.

Caring for someone with PD can range from "quite manageable" to "exceedingly difficult," with responses demonstrating that:

  • 15 percent of care partners are operating in a very low stress environment. 
  • 55 percent of care partners operating in a fairly high to very stressful environment. 

The level of stress for care partners was a function of a number of indicators including:

  • things that the care partner does (e.g., provides care at least five hours a day; interacts with healthcare professionals and manages difficult symptoms);
  • things about the person receiving care (e.g., he or she is at least 75 years old; care partner is not satisfied with communication with the person receiving care;
  • the care partner feels that the person receiving care is not doing all that he or she could do to manage her or his disease); and 
  • impact on the care partner (e.g., care partners do not take time for themselves; there are times when care partners need help; care partners are concerned about finances).
  • Although some of the indicators are likely to carry more weight than others, as the number of indicators increased, we inferred that the environment was more difficult, demanding and stressful for the care partner.

What Does it Mean?

This study provides new evidence of the challenges that Parkinson's care partners face as they struggle to meet the needs of their loved ones and to balance the competing demands of giving care, working and meeting other family responsibilities. The data suggests the need for a more comprehensive approach to programs designed to support and sustain care partners of people with Parkinson's.  One possible limitation of this study is that the data only reflects the responses of care partners with Internet access and these results might not be representative of the larger PD care partner community.