Caregivers – Understanding Informal Networks of Support

 
A recent study by Wilder Research, Caregiving in Context looks at family, friends and community caregivers' networks of support. The research was sponsored by Wilder Foundation's Capacity to Care initiative to raise awareness of the important role caregivers play, and to build the capacity of family, friend and community caregivers. Kirsten Johnson, manager of the Capacity to Care initiative explains why Wilder Foundation has made caregiving awareness a priority, and the purpose of the research.
 
Q: Why did the foundation commission this research?
A: The coming “age wave” will bring with it what I have begun to call a “caregiver groundswell” – as our population ages more and more of us will be providing care to our family, friends and neighbors. The importance of this informal caregiving really cannot be overstated, it is essential to the stability of our families, our communities and our economy. But, research shows that providing care to an older adult can be very stressful and is often damaging to the health and financial well-being of the caregiver.Wilder has taken a leadership role in acknowledging that not only is the caregiver groundswell coming, but that our current models for supporting those providing care are underutilized and ineffective.  For the past two years we have been developing solutions that address the root cause of these problems – creating proactive caregiver support strategies that reach caregivers before the crisis and launching a caregiver public awareness campaign designed to increase caregiver self-identification.
 
The Caregiving in Context study was designed to increase our understanding of caregivers’ informal networks of support in Wilder's service area.  We need to better understand these networks for two reasons: 1) because they are the most important source of support for caregivers, and 2) because formal systems of support will not have the resources to keep pace with the growing number of caregivers in need. Designing strategies that strengthen these informal networks is the best investment we can make in responding to the coming caregiver groundswell.

Q: What were the key findings?  Were there any surprises?

A: The most important finding is that informal support matters. Caregiving in Context found that caregivers with stronger informal networks of support reported less stress and better health.  According to the caregivers in our study, support from family and friends is the most important support they have  in place, ahead of doctors, paid services, and other resources.

The report also found that:

  • Caregivers are less stressed and better supported when assisted by both family members and others outside the family.
  • The experience and support of caregivers varies depending on their relationship to the person in their care. For example, spouses experience the most distress and may be less likely to reach out for help, sons lack informal support, and despite strong informal support networks, daughters are pressed for time and balance.
 
Regarding surprises, at a forum we hosted for providers, many were surprised by the number of sons who are serving as primary caregivers to their aging parents – a shift that is likely to increase as the number of people caregiving overall continues to grow. 
 
Q: Can this research be generalized outside of St. Paul?
A: The answer is “yes, but...” The study interviews caregivers  from 7 Saint Paul neighborhoods. St. Paul caregivers (and residents more broadly) have developed strong ties to their communities: They are long-term residents, participate in community events, and expressed a sense of trust and connectedness to their neighbors. Some caregivers have enlisted the help of neighbors in their caregiving role, and some of the primary caregivers are neighbors. This is a distinct feature of our sample which may, in some ways, affect the ability to generalize the results of our study.

That said, the characteristics of caregivers, the time and responsibilities of the caregiving role, and the distress that come with caregiving are all very well aligned with national and statewide studies of caregivers. It’s reasonable to think that the insight we’ve gained about the importance of informal support would translate to other communities while acknowledging that the strategies to strengthen that support may vary.
 

 Caregivers Speak Out

 



Wilder's Capacity to Care Initiative hosted forums for informal caregivers and professional service providers to share findings from the study, and to get input on what next steps were needed to better serve informal caregivers. 

The groups identified the following as the three top challenges to address:

  • Understanding Medicare
  • Balancing work and caregiving
  • Finding information about services 

Caregivers also said they want systems that are easier to navigate and acknowledge the role caregivers play in the care team. 

 

 Resources

 

Lead researcher Greg Owen reveals some of the key findings from the survey.

 

 

View more videos from the event

View the report and summary, Caregiving in Context

 

Wilder Foundation

Capacity to Care Initiative