Caregivers draw support by mapping their relationships

CareMaps are an intriguing new tool created by the Atlas of Caregiving, an ambitious project that hopes to gather comprehensive data about family caregivers.

DENVER — Every time Jacque Pearson tried to devise a plan to move her 81-year-old dad, who has Alzheimer’s, from his home in Boise, Idaho, to hers in Denver, she felt stuck. Then, two weeks ago, she had a breakthrough.

It happened at an AARP-sponsored session in which Pearson created a “CareMap” — a hand-drawn picture showing all the people she cares for as well as the people surrounding those individuals and her own sources of support.

On one side of the paper, Pearson sketched out her father’s situation. There were three friends from Alcoholics Anonymous and his longtime doctor — the people he relies on most. There were three sisters and two sons in Arizona, not very involved. And there she was, the primary caregiver, far, far away.

As she peered at the drawing later that evening, Pearson saw what she had to do. “I’m going to contact each of his Alcoholics Anonymous friends and his doctor and ask them to convince my father to come to Colorado,” she told me when I called a week later.

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How could a quick sketch of stick figures (representing the people in her father’s life), triangles (representing his medical providers), arrows (representing relationships between people) and boxlike houses (where she and her father live) have this kind of impact?

CareMaps are an intriguing new tool created by the Atlas of Caregiving, an ambitious project that hopes to gather comprehensive data about family caregivers. The project’s pilot study examined 14 families in the San Francisco Bay Area who wore miniature cameras and sensors, kept a log of their activities and participated in extensive in-person interviews.

One of the goals was to understand what Rajiv Mehta, the project’s founder, calls the “ecosystem of family caregiving, the relationships that surround caregivers and that shape their experiences.”

One family caregiver might be at odds with her siblings but have a close group of friends she can turn to for emotional support as she cares for a disabled husband, for example. Another might be divorced but have a son living at home who can help with practical responsibilities as he cares for his mother with Parkinson’s disease, who moved in a year ago. Yet another couple in their…

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