Caregiver advocates are trying to get health policymakers to carve out a niche for caregivers in medical care and long-term care (LTC) records.
Suzanne Mintz, a representative for Family Caregiver Advocacy, a new group in Kensington, Md., said in an interview that one problem relatives and other providers of unpaid care face is the lack of an official place in either traditional paper records or the new electronic health records.
Because providers do not even have a standard way of noting whether patients have caregivers, let alone who the main caregivers are, public and private organizations have no reliable way to even count caregivers, Mintz said.
Depending on exactly what caregiver information providers could eventually put into the patient records, researchers and others might also be able to use the information to get a better understanding of how providing caregiver resources affects the caregivers, Mintz said.
Academic research already suggests that providing care puts caregivers at risk of developing health problems of their own, Mintz said.
Some providers may already include caregiver information in patient records, "but certainly no institutions are doing it," Mintz said. "It's really a neglected area. It shows a complete lack of respect for family caregivers."
Mintz would like to see the private insurance community, including issuers of private long-term care insurance, support the effort to create a caregiver information record standard.
Advocates are hoping to hold a meeting on the topic in Washington Oct. 25.
Developers of any standard would have to balance an interest in collecting useful caregiver information with a need to keep patient recordkeeping rules simple and practical, and a need to respect the privacy of the patients and the caregivers, Mintz said.