Caregiving from an Evidence-Based Perspective

By Stephanie Mensh

November is National Family Caregivers Month. While caregiving can be a very rewarding experience, caregivers are at risk of fatigue, increased stress, and other negative health consequences. One way to help reduce the stressors faced by caregivers is to learn about and employ helpful tools and resources.

At this year’s annual Home and Community Based Services national conference, a number of sessions addressed the need to support family and informal caregivers of people with chronic conditions and disabilities.  While there have been many studies tracking hours and activities with self-reporting logs kept by the caregivers, researchers associated with the Atlas of Caregiving have been taking a more objective approach, using today’s mobile technology to provide additional documentation and perspective.

The Atlas researchers have been tracking about a dozen families of individuals with chronic, complex care needs, including stroke and other neurological disorders.  The tracking includes technology like wearable exercise and heart rate monitors, motion sensors, weather stations to track home temperature and other atmospheric levels, GPS location trackers, and wearable cameras, in addition to traditional written logs and diaries.

The data showed that families and others were devoting significantly more time and energy into worrying about or providing care than they recognized. In many cases, there were also additional family members or individuals involved in the caregiving process beyond the traditional model of “a caregiver, a care recipient, and doctors.” The increased time and energy associated with caregiving, in addition to the trend towards having more than one family member or individual assisting with care is reflective of the complex nature of arranging for and providing care.

The researchers are using their preliminary findings to develop tools to help caregivers. One is the Care Map, a map showing the location of the individuals needing care and their families, friends and professionals who provide care. Their research shows that this simple approach was a powerful tool for the caregivers and care receivers.  While the beta version is a pencil and paper map drawn by hand, they are working on an electronic tool. Here is a summary of how to draw a Care Map:

  • In the center of the paper, draw a home circle where the individual lives and sketch in stick figures of those who live there, including all family members and pets.
  • In the next circle out, sketch family, friends, home aides, healthcare professionals, rehab centers, and others involved in helping the individual, who are located nearby.
  • Next, draw those located within a two-hour drive and those beyond two hours away.
  • Then, show how often these individuals are involved, using heavy lines for daily, dashed lines for weekly or monthly, and dotted lines for occasionally.  
  • Include the amount of caregiving the person with the disability provides to him or herself and to others, including other family members and pets.

The Atlas of Caregiving website has a helpful video on how to draw the Care Map, and a list of tips on how to use it. These include how to recognize additional family, friends, and other resources that might be back-up support.