Family Caregiver Support Apps: Questionable Evidence, Content, Security and Unmet Needs

As the population of older adults increases, the number of caregivers for people over age 50 has also increased from 34.2 million in 2015 to 41.8 million in 2020—an increase of 22% [1]. Caregiving most often can be emotionally, physically and financially burdensome and often caregivers seek resources to help support them in their role [2, 3]. Today, mobile apps have become more common as a potential solution to address caregiver needs; however, we are concerned that caregivers are being taken advantage of due to poor practical real-world implementation of these apps. “Mobile apps have become more common as a potential solution to address caregiver needs, however we are concerned that caregivers are being taken advantage of due to poor practical real-world implementation of these apps.” As providers to patients who often are or have caregivers, and some of us as caregivers ourselves, we were hopeful that these apps could be a positive resource and additional layer of support for our patients and their loved ones. We reviewed 21 caregiver apps and found 57% (12/21) included informational resources, medication reminders, shared calendars or social networking opportunities, all of which seem to have the potential to be helpful tools for caregivers. Unfortunately, initial anecdotal feedback from caregivers is very consistently negative: many did not have time for apps or the tech savviness or inclination to engage with these kinds of apps. A deeper dive into some of the apps available on the Apple and Google stores left us surprised and provided rationale on why these apps may not be useful. Cost structures varied widely from free (with in-app purchases), $2100 annually or $100 per month, $10,000–$42,000 annually. Content producers/owners were frequently non-healthcare, lacking expertise in caregiving, and without geriatric medicine training, sometimes even lay family caregivers with solo caregiving experience. Many apps lacked data security or any kind of evidence on effectiveness. For example, one caregiver support app included the ability to input private health information, medication lists, and caregiver journaling, but asked users to sign a perpetual license allowing app owners to use personal content without guaranteeing that the information would be held confidential. Moreover, user reviews were underwhelming: the average rating was 2.7 out of 5 across all apps and, while aimed at caregivers, apps did not appear to be set up to meet caregiver needs. Even more concerning is that, despite these at best questionable findings, several apps are listed as preferred or recommended by large groups like the American Association of Retired People (AARP) and National Association of Area Agencies on Aging (N4A)(Table 1). Free to download; fees for in-app services > 5000 downloads Caregiver apps showed wide variability and questionable utility in terms of user ratings, types of assistance offered, and levels of data security. This aligns with some previous work on technology-based interventions for this population. Systematic reviews of the literature have found modest to no effect on caregiver burden and depression when telephone and Internet-based tools are used for support [4, 5]. Caregiver apps' limited efficacy must be balanced against their costs—both explicit (amount paid for the app) and implicit (data security and commercialization). In order for apps to be useful, they must address caregiver needs. Previous work has identified barriers that prevent caregivers from obtaining digital information regarding dementia-related behavioral symptoms [6-8]. Caregivers report difficulty in finding material specific to their situations; it either does not exist, or they must sift through large amounts of information to find what they need. The effort required can increase caregiver burden at a time when they already feel overwhelmed. Further research is needed to determine how apps could effectively support quality evidence-based care for older adults. Future studies should explore whether generative artificial intelligence (AI) reduces caregiver burden by providing more specific material than standard search methods. If proven effective, apps could incorporate AI into their programs so that caregivers can easily access information relevant to their situations. Research is needed to help family caregivers and area agencies on aging vet and identify apps that effectively support quality care of older adults and provide support to caregivers who may be struggling in their caregiver role. Currently available caregiver support apps are overwhelmingly not evidence-based, lack reliable geriatric-based assistance, and lack security to limit misuse. These findings are particularly troubling given the sheer number of caregivers and area agencies seeking online support strategies. Caregivers and healthcare providers should be aware of the risks and limitations when using, purchasing, or recommending these apps. All authors met criteria for authorship by C.F. and L.A.L. conception and design of the study. C.F., A.M., and A.P. data acquisition. All authors analysis and interpretation of data. All authors manuscript drafting. All authors revising the manuscript critically for important intellectual content. All authors approval of the version of the manuscript to be published. The sponsor was not involved in the design, methods, analysis and interpretation of the data, and preparation of the manuscript. The authors declare no conflicts of interest.