Formal and Informal caregivers

A Caregiver Survey that was just published in the Archives of Internal Medicine has me thinking about the roles of home care agencies and informal caregivers, defined as those who have taken a primary role of caring for a disabled or dying family member or friend. Some recent public policy initiatives on the state and federal levels that would compensate these caregivers for their efforts often seem to be positioned as at odds with professional or home care agency delivered care. But from where I sit, this seems hardly the case.

The survey revealed what many could intuit: Among the caregivers of adults in the last year of life, 41.5 percent were spouses and 39 percent were children; 75.1 percent were female (no surprise!). These caregivers had an average age of 64 years. They provided an average of 43 hours of care per week, and 84.4 percent of them provided daily assistance.

More than two-thirds of family and friends serving as informal caregivers to disabled older adults living in the community during their final year of life found their role rewarding despite providing more than 40 hours of care per week.

Interesting to me the authors concluded that these caregivers made "little use of caregiver-focused supportive services." Yet within the data was the fact that 37.2 percent used personal or nursing care services during the final caregiving year. To me this is significant. As I said in the opinion editorial that I submitted to papers for Thanksgiving 2006: "Professional caregivers - nurses, therapists and aides - are often best position to see the sacrifices family caregivers make for their loved ones. We know we can't replicate the love in the family caregiving relationship; but we can do our best to make their job easier."

To all the family caregivers out there, our industry acknowledges your effort and sacrifice. We need to also let you know that we are here to help if you need us.

Til next time.