Caregivers sometimes find supplies or equipment delivered at the door that they had, in fact, expected. But, said Susan Reinhard, it would be nice had it come with instructions or, better still, an instructor.

"About a third of those who are doing wound care were not taught any of it," she said. "We’re talking colostomy care, post-surgical wounds … tube feedings. All kinds of equipment that people don’t teach you, they drop it off at your house."

Reinhard is the senior vice president and director of the AARP Public Policy Institute.

She was in town last week to advocate for a bill in the state Legislature that seeks better support and training for family caregivers, and also took the opportunity to speak about a 2012 study she co-authored with Carol Levine and Sarah Samis.

The study is "Home Alone: Family Caregivers Providing Complex Chronic Care," and it lays out the reality of what confronts a lot of people tending to their elders or loved ones at home.

Things like wound care fill them with anxiety, she said; 46 percent of them perform medical or nursing tasks, such as helping with assistive devices for mobility and other specialized equipment.

It’s a surprisingly large percentage, she said, considering that most caregivers assume only that they’ll be helping with basic activities of daily life, the range that runs from getting up and getting dressed to independent-living skills such as cooking or cleaning.

The study included a raft of policy proposals.

Here are a few:

» Individual health care professionals must fundamentally reassess and restructure the way they interact with family caregivers in daily practice.

» Professional organizations should lead and support professionals in their efforts to improve communication and training for family caregivers.

» Accrediting and standard-setting organizations must more rigorously evaluate how well institutions incorporate family caregiver needs and require that corrections be made.

» The needs of family caregivers should be considered in publicly funded programs.

The lack of training was evident throughout the data, Reinhard said.

"The people that they’re caring for have had multiple interactions with the health care system over the course of the year," she said. "So it’s not as if they can’t get training somewhere."

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