What do family caregivers really do? What is their day like? Remarkably, though there are tens of millions of children, parents, and spouses in the US helping millions of frail older adults and younger people with disabilities, we know very little about their daily experiences. In an effort to better understand what it is like to care for a relative or friend, the California-based Family Caregiver Alliance has just concluded a fascinating experiment: Is it possible to use a mix of interviews, personal logs, and new technology to map a caregiver’s day?
Called the Atlas of Caregiving, the experiment involved tracking 14 largely self-selected families in the San Francisco area for about one day. This very narrow sample limits the value of the specific findings. And the real goal was not to tell a comprehensive story about caregiving but rather to learn whether such a study, expanded to many more families, could develop big data that would help us better understand what a caregiver’s life is like, and how she can be supported.
The researchers did two interviews (one for an hour, and another for 90 minutes) with the caregivers, asked them to keep an activity log, gave them a small clip-on video camera, used monitors to track biometric and environmental data, and installed motion detectors to track movement. They found that the low-tech interviews and logs were extremely valuable, and the biometric monitors were useful. The other technology was, for various reasons, less successful.
For example, they found that the logs helped both researchers and the caregivers themselves better understand what a day was like. While the logs varied in content and in detail, and were often incomplete and inaccurate, they still were a powerful tool.
They showed that family members often underestimated how much they really did to help their loved ones. The logs also showed patterns of caregiving. For instance, one woman never realized how frequently she was helping her husband go to the bathroom until she reviewed the log.
The monitoring also showed the complexity and fragmentation of caregiving, and how it often occurs in the context of frequent and dramatic change. One result: It is very hard for family members to find time to do anything else. Even when they are not formally doing tasks that are described as caregiving, they are worrying about the next crisis or a task undone. The research found that stress is often linked to the overall environment rather than to a specific event.
Another interesting finding: Even in families that identify a single primary caregiver, many others are often involved. Their assistance can be valuable, but it can also add complexity to a caregiver’s life. Organizing those supports and dealing with disagreements and emotions of those helpers can often add to caregiver stress.
In one family, a 50-something son cares for his mom, who has dementia. But there are many other involved, including nine doctors, three paid aides, a family therapist, a caregiver support group, his wife, his dad, his brother and sister-in-law and their children, and his wife’s parents and her two siblings.
The early work also found that defining caregiving experiences by the disease of their loved ones may be a mistake. They suggested that age, overall health status, finances, and location may be just as important.
This very early experiment shows promise. The logs, interviews, and some of the technology create the opportunity to build an ongoing caregiver database that can supplement, and perhaps improve upon more traditional surveys.
Until now, the main way researchers track caregiving is through either big public surveys such as National Health and Aging Trends Study (NHATS) or the National Study of Caregiving (NSOC)—or occasional private surveys such as the National Alliance for Caregiving’s studies: Caregiving the U.S.
However, the surveys often require participants to respond about events that occurred in the past (for instance, NHATS asks about events from the month before an interview). Thus, there is always a question about how well caregivers, who are already under stress, may remember their activities after these time lags.
Hi-tech monitors and contemporaneous diaries could address those problems. Of course, they raise their own questions– about privacy, the extra work required by people already overwhelmed with caregiving, and the likely variation in quality of the information they collect. Projects such as are also likely to be quite costly. Yet they could provide important information about a day in the life of a caregiver.