In 2014, research by the AARP estimated that 40 million Americans provide unpaid care to an adult. About 68 percent of family caregivers have no paid help and by 2020, 45 million family caregivers will care for 117 million people, according to a new report on caregivers that is part of AARP’s Project Catalyst. Given that caregivers are overworked, frequently isolated and stressed, technology could theoretically help them manage their loved ones better. And most of the caregivers in a previous survey by the AARP expressed interest in these tools. But when caregivers were given the opportunity to test drive these tools over a six week period, they often found that the functionality and usability left something to be desired.
HITLAB carried out three studies between May 2016 through January 2017 in which caregivers assessed care coordination tools, personal emergency response devices, and home care aide hiring tools.
Caregivers were expected to assess whether and how tech could address their needs, advantages and disadvantages of each regarding function and design, barriers and opportunities for use and areas for future improvement.
On the care coordination front, the product under assessment was intended to help caregivers with the challenge of keeping on top of multiple parts of their loved one’s care. About 90 percent had developed some sort of system to do this. But poor product design meant that it didn’t sufficiently meet their coordination needs. The information that had already been recorded in a calendar or email was essentially siloed and could not be shared easily. The device actually created more work for the caregivers because they had to repeatedly key in the same information because the tool lacked an autofill setting. The device was so unhelpful that 95 percent of the participants went back to using their paper-based approach.
A personal emergency response system resonated the strongest with caregivers of out of the three studies. One reason was that they found the device could improve communication between caregivers and their loved ones well beyond emergencies. One strike against it was that some caregivers wanted more control over who would be notified in emergency situations — family members vs. emergency services. Another was a low activity alert setting — caregivers envisioned it creating false alarms.
Last but not least was a study evaluating home health aide hiring services. The inherent challenge here is that no matter how well vetted a home health aide might be, even if the caregiver has a good rapport with them, the loved one might not. Caregivers need compatibility and credentials of home health aides. The study covered the cost of hiring the aides to carry out various tasks and the satisfaction level was high among caregivers. Most caregivers need to see 11-25 home aides before they selected one, but in-person interviews were critical.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
Underscoring a general need by caregivers, participants in this segment of the study said that increasing caregiver control of vetting, interviewing, hiring and scheduling, supported by professional guidance to help them with decisionmaking made a big difference in caregivers’ peace of mind.
Some of the conclusions of this report seemed rather obvious, such as caregivers regarding the interview process as the most important. Interestingly, caregivers would like to see more automation with home aide selection tools.
A significant conclusion was that costs and insurance coverage remain barriers to widespread adoption of these services by caregivers.
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