Caregivers and Technology – When Personal Connected Health Becomes a Lifeline

Support for caregivers is an under-recognized but growing need. A recent letter to the Journal of the American Medical Association notes  that “from 1998 -2012 the percentage of home-dwelling, functionally disabled older adults in the United States receiving caregiving assistance increased to more than 50%.”  The Rand Corporation reports that cost of informal caregiving for U.S. elderly is $522 billion annually.  A new report from AARP and HITlab addresses this topic through three themes:

  • How caregivers are currently using technology
  • What functions caregivers are interested in
  • What barriers  innovators need to overcome to adequately meet caregivers’ needs

A nationally representative sample of 1,028 caregivers completed online surveys from October through December 2015.  Why survey caregivers? According to the report, “40 million Americans provided unpaid care to an adult” in 2014. This number will only increase in the future, making caregiving technology support a ripe area for innovation. The study originated from Project Catalyst of AARP and the complete report is available from the AARP website.

Caregivers are currently using technology for medication management, including scheduling. Technologies for finding and procuring assisted living or in-home aides were least used by caregivers surveyed. This may indicate that medication management is a prime role for caregivers with family members on multiple medications, a task that can be complicated by potentially complex dosing schedules and coordination with more than one prescriber.

Meanwhile, poor caregiver uptake of tools for hiring and coordinating with assisted living or in-home aides was indicative of low trust, according to the survey. Allowing aides into their home or the home of a family member requires a high degree of trust as well as an in-person meeting or a relationship with a trusted agency, according to survey respondents.

Barriers to use of technology for caregivers are many, and innovators should be acutely aware of these when developing apps or services. Two major concerns are lack of awareness of technology solutions and lack of an integrated platform. On the second point, caregivers are already burdened with many tasks in a given day; using multiple apps to fulfill their needs is not a viable option.

Also addressed in the results was technology literacy, which in these respondents was high. But at the same time, response rate among Hispanics was low, so it is unclear whether language barriers and technology literacy may be an issue for this group, although the results were balanced based on race, ethnicity and gender.

The report concludes   opportunities are great with  market estimates  $72 billion by 2020.  But what do caregivers want and need?

For one thing, caregiving can be drastically different, depending on individual needs and caregiver availability and training. Consider the needs of a daughter who works full time, has a family and cares for her elderly mother, who lives alone and needs help managing medications and doctor appointments, but is still ambulatory and safe at home.

Contrast this with the needs of one or more adult children caring for an elderly man with advanced Alzheimer’s and urinary incontinence. Stress levels and information needs may be drastically different (I would encourage the reader to see the direct quotes in the survey results). App and technology design must first of all be customized and personalized.

Secondly, the study pointed to the lack of a single platform for use by caregivers. Much like patients, caregivers may need medication management, education on conditions (such as memory loss), help managing multiple medical appointments and more. Seventy-one percent indicated an interest in new technologies to support caregiving. Caregivers in the survey looked to technology for:

  • Refilling and picking up medication(79.1%)
  • Supervising medical appointments (77.9%)
  • Assessing health needs and conditions (77.5%)
  • Ensuring home safety (77.5%) and
  • Monitoring medication adherence (77.2%).

The report concludes that while the technology is already available, barriers to adoption remain—again, lack of awareness, cost, failure of technology to deliver value, and lack of time to learn. As recommendations to innovators, the authors suggest:

  • Simplified monitoring - caregivers want simple ways to monitor their family member (such as, cameras – baby monitors, Nest?)
  • Medication management – this includes lack of awareness of available options,  and a  need for better tools. However, medication management may also be exacerbated by our fragmented healthcare system with lack of coordination between primary care, specialists and pharmacists
  • Continuum of care tools – integrated solutions or platforms that offer multiple services, including shared calendars when multiple family caregivers are involved (and may be working full time and/or managing a family)
  • Personalization, but from a trusted source – this may imply the need for primary care physician/team to be familiar with and recommend the caregiver technologies
  • Social support – while many activated patients find social media to be a helpful tool, caregivers are mixed on this, maybe because of lack of time, but also, lack of awareness and social networks customized to their needs

My conclusion fits with that of the report – we need innovation in caregiver support that listens to specific needs, customizes and personalizes solutions, and presents them in an integrated platform. It is a tall order but achievable with current technology.

In addition, care teams must keep current on technology, ask caregivers what is helpful, and then, make recommendations to other caregivers. This may include offering online training and recommendations and social networks, especially for the challenges faced by Alzheimer’s caregivers.

The report did not delve into telemedicine as a solution, but having the ability to do e-visits with caregivers and patients connected with a physician or nurse practitioner, to solve simple problems, could save time for caregivers and reduce stress for caregivers and patients. Also,  keep in mind caregiver health addressed in the 2015 International Survey on Connected Health by IPSOS.

Interested in learning  more? Register now for the Connected Health Conference in December, and hear about the PCHA Campaign for Healthy Longevity.

Healthcare; health IT; patient engagement