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. Author manuscript; available in PMC: 2021 Nov 1.
Published in final edited form as: Geriatr Nurs. 2020 Jul 12;41(6):909–915. doi: 10.1016/j.gerinurse.2020.06.019

Exploring dementia family caregivers’ everyday use and appraisal of technological supports

Laura Block a, Andrea Gilmore-Bykovskyi a,b,c, Anna Jolliff d,e, Shannon Mullen a, Nicole E Werner d,b,e
PMCID: PMC7738396  NIHMSID: NIHMS1609337  PMID: 32665095

Abstract

Family caregivers provide the majority of care for people with dementia, often balancing multiple caregiving roles. Technology-based interventions have demonstrated strong potential for supporting family caregivers in navigating these roles, yet translational uptake of these interventions remains limited. A comprehensive understanding of how caregivers engage and evaluate everyday technological supports is necessary to foster broader adoption. Through semi-structured interviews with 20 caregivers, the present study aimed to explore caregivers’ everyday use and appraisal of technological supports. We found that caregivers use specific technological supports to meet specific caregiving needs (e.g. coordination, information seeking, direct care), and exhibit unique technology use patterns (e.g. trial-and-error) shaped by the caregiving need. Caregivers shared positive appraisals of technological supports for caregiving, citing the role of perceived utility, existing familiarity, and social resources in their acceptance and uptake. These findings illustrate important perspectives regarding everyday technology with immediate relevance for intervention design and functionality.

Keywords: technology, dementia, family caregivers

INTRODUCTION

Worldwide, there are 50 million individuals affected by dementia, which encompasses a number of progressive, irreversible neurodegenerative conditions that result in impaired memory, judgement, communication, and function. 1, 2 Over time, people with dementia require an increasing degree of support, the majority of which is provided by unpaid family and friend caregivers (hereafter referred to as family caregivers). 3 In the United States alone, an estimated 16 million family caregivers dedicate more than 18.5 billion hours annually providing unpaid care to meet the needs of people living with dementia. 3 Providing care for someone with dementia involves various complex tasks and responsibilities and is frequently associated with negative health consequences including increased stress, burden, and depression. 4-6

Family caregivers commonly report a wide range of unmet needs, including information and training specific to dementia, daily care tasks (e.g. bathing, medication management), behavioral symptoms (e.g. agitation, wandering), and psychosocial support (e.g. stress management techniques). 7 To supplement strained health and social service systems, there is great interest in the role of technology to support people with dementia and their caregivers. 8,9 Within the context of supporting family caregivers of people with dementia, technological supports most often include assistive technology, defined as “any item, piece of equipment, product or system that is used to increase, maintain or improve the functional capabilities and independence of people with cognitive, physical or communication difficulties.” 10 According to this definition, assistive technology includes a range of devices—from basic tools (e.g. kitchen scales) to sophisticated information and communication technologies (e.g. voice-controlled digital assistants)—specific to supporting a person in achieving their functional goals. 10,11 Technological supports may offer family caregivers tools and resources to meet caregiving needs related to safety and monitoring, daily function, activity and leisure, communication, and caregiving work, thereby improving caregiver outcomes, decreasing caregiver burden and strain, and increasing social support. 8,12 Altogether, the promise of technology for supporting family caregivers has stimulated international interest and shaped research and funding priorities. 3,13,14

Despite the promise for technological supports to improve the caregiving experience, broader application and adoption of these tools into practice and real-world contexts remains limited. 15-17 This lack of progress toward broader real-world dissemination may be driven by the limited research on family caregiver everyday use and appraisal of technological supports. To date, the majority of studies focus on design and testing of researcher-generated technology-based interventions. The few qualitative studies exploring family caregivers’ everyday use of technology point towards caregivers’ use of innovative practices and commonly available household devices along with the need for technology to complement caregivers’ existing habits. 11,18,19,20,21 Regarding family caregiver preferences on technology, there is evidence that acceptance of technology increases when it is designed to align with caregiver needs and expectations. 22,23 Further, caregivers’ technology acceptance increases when the technology is perceived to be both helpful for daily life and easy to use. 21,24-26 This small but growing body of research offers critical information for user-centered design of technologies to support family caregivers.

Given the critical need to better support family caregivers and potential scalability of technological tools in practice and real-world contexts, an expanded understanding of caregivers’ engagement with and appraisal of technological supports is needed. Absent this understanding, our current technology-based interventions may not align with caregivers’ current technological patterns and preferences and even inhibit adoption. To address gaps in our understanding of dementia caregivers’ use and evaluation of technological supports, the present study aimed to elicit these viewpoints. Specifically, our study aimed to explore family caregivers’ current everyday use and appraisal of technological supports to support their caregiving role.

METHODS

Participant Recruitment

Institutional Review Board approval was received prior to initiation of study procedures. We used convenience sampling to recruit 20 caregiver participants. To increase geographic, socioeconomic, and racial/ethnic diversity among participants, our recruitment strategy spanned several Midwest counties and targeted community, academic, and hospital settings. Recruitment methods included flyers posted online and in community venues such as coffee shops, libraries, community centers, and senior centers. Participants were also recruited through a hospital-based recruitment mechanism wherein a study team member located caregivers of hospitalized dementia patients. Data on the number of individuals reached by each recruitment mechanism or approached by hospital staff but not consented was not collected under the current Institutional Review Board approved protocol.

Given the objective to examine perspectives of family caregivers who may use technology to support caregiving, inclusion criteria included functioning as a current caregiver for a person with dementia or memory issues, self-identification as a primary caregiver, and ability to participate in English. Exclusion criteria included receiving formal compensation for caregiving, as the experiences of unpaid, “informal” family and friend caregivers likely vary substantially from those of paid, trained caregivers, such as personal care attendants. For the purposes of this study, family caregiving was defined as a family or friend providing any unpaid support (including direct care, financial help, coordinating support) for a person with dementia, with status as a primary caregiver defined by the caregiver, in that they felt they were the person who provided the most intensive (whether physically, emotionally, financially) care for the person with dementia. All participants provided verbal informed consent prior to study commencement. Participants received a $25 honorarium.

Design

This study used a descriptive qualitative approach with semi-structured interviews for data collection, which were set a priori to study commencement. The semi-structured interview guide (Table 1) was developed by two authors (AGB, NW), both with training in qualitative research, and was reviewed by respective study teams who span nursing and engineering disciplines. Interview questions targeted broad domains such as daily caregiving, tools and resources for caregiving, and strategies to manage caregiving and common challenges such as behaviors in an attempt to examine experiences with technological supports in an unprompted manner.

Table 1.

Tools for data collection and analysis

Example interview questions used within a semi-structured interview guide

  • How would you describe your caregiving activities during a typical day?

  • What are some of the differences between the good day and the challenging day?

  • What types of tools or resources are you currently using to help you with your caregiving? What about these has worked well for you? What about these resources has not been helpful or presented barriers?

  • If you could have support for caregiving through a tool or resource what would you want it to look like?

  • What do you do when a behavioral or emotional challenge for the person you are caring for occurs?

  • Do you have any strategies you use to help you carry out your caregiving activities, manage challenging behavioral or emotional changes, or challenging situations?

  • Can you think of a time when you didn’t know how to handle a caregiving situation? What did you do?

  • Is there anything else you think it is important for me to know about the types of resources caregivers like you could benefit from?
Coding framework categories and descriptions

  • Caregiver’s identification of need for support: Statements where caregiver describes a prior or current met or unmet need for support to fulfill their caregiving role or duties

  • Use of technological support: Statements where caregiver describes use of a technological support that meets the study team’s working definition, and is used to aid in their caregiving role or duties

  • Appraisal of technological support: Statements where caregiver provides a positive, neutral, or negative appraisal of a technological support, or expresses a desire for a technological support to meet their caregiving need in a new or different manner

  • Employing formal support: Statements that indicate a caregiver is interacting with formal or paid supports including home health services, primary care providers, respite care, etc. Only capture statements that directly relate to use of technological supports

  • Employing informal support: Statements that indicate a caregiver is coordinating care with other informal, or unpaid, family or friend caregivers. Only capture statements that directly relate to use of technological supports

  • Other tools and strategies employed: Statements that indicate a caregiver may be using additional tools and strategies in relation to their use of technological supports
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Data collection involved a single, hour-long interview that took place in a location of the participant’s choice and was conducted by one of three authors (AGB, AJ, NW). All interviewers used the semi-structured interview guide, probing for additional detail and asking about new concepts of interest as the study progressed (i.e., per Braun & Clark’s 2006 thematic analysis methods). 27 Demographic information was collected using an optional questionnaire at the end of each interview. Authors had no established relationship with participants prior to study commencement, and participants were informed of the purpose of the study before interviews were conducted. Interviews were audio recorded, transcribed verbatim, and deidentified for analysis. Data collection took place in 2017 and 2018.

Analysis

Interview transcripts were analyzed applying thematic analysis as outlined by Braun and Clarke (2006) using a multidisciplinary team of nurses, industrial and systems engineers, and a psychology graduate student. 27 Three team members (LB, AJ, SM) developed and iteratively revised a coding framework (Table 1) by reviewing a subset of transcripts. This coding framework, which contains six major coding categories, was then applied to all transcripts. Line-by-line coding was done independently by three team members (LB, AJ, SM) using Microsoft Excel and Word. All transcripts were reviewed and coded at least one time by each of these three team members, with several transcripts requiring multiple reviews given their length and density in concepts. Regular meetings were held to compare coding results and rectify disagreements via consensus between coders and in consultation with the entire team. All team members then discussed relevant passages and coded data to determine overarching themes related to technological supports. In addition to thematic analysis, coders generated a descriptive list of all technological supports mentioned across transcripts.

To enhance reliability and validity of data collection and analysis, we applied Devers’ 1999 criteria for rigor in qualitative research.28 We convened a multidisciplinary team and focused on team reflexivity (credibility and confirmability), 29-31 explored cases across the spectrum of technology engagement for deviant case analysis,29,32 performed regular memoing to identify bias (confirmability),33,34 detailed our research process and decisions (dependability), 35 and utilized a multi-pronged recruitment strategy to achieve greater socioeconomic and racial/ethnic diversity within our sample. Finally, for the purposes of data collection and analysis and as informed by existing literature,10,11 we defined technology broadly as any technology-based tool or resource, including simple assistive devices, information and communication technology, mobile and web-based applications, and web-based informational resources.

RESULTS

Participant Demographics

Twenty participants completed the interview study. Participants were between the ages of 47 and 82, with a mean of 63, and lived in both urban and rural areas of the Midwest. The caregivers were either a spouse (n = 9) or a child/step-child (n = 11) to a person with dementia. Gender was almost evenly distributed with 11 participants indicating a female gender. Ten participants identified as Caucasian and one as African American. Due to the elective nature of the demographic form, seven participants did not specify age and nine did not specify their racial/ethnic background. Given that support context might impact caregivers’ use of technology, we also collected information on their sources of support. Fifteen participants reported having frequent support from other family or friends, and 11 caregivers used a source of formal support such as in-home care or skilled nursing facilities.

Thematic Findings

All twenty caregivers indicated they currently use at least one form of everyday technology, and 18 described use of multiple technological supports. Caregivers described using a wide range of commercially available technology products, including communication devices, mobile and website applications, the Internet, and wearable devices (Table 2). Across interviews, caregivers consistently described adapting these technologies to meet specific caregiving needs or to accomplish specific caregiving tasks. Caregiving tasks included care coordination within and between informal and formal networks, direct care, and information and knowledge gathering (Table 2). Additionally, caregivers described different technology use patterns that were influenced predominantly by the nature of the caregiving need. Descriptions of everyday technology use were most often generated when discussing resources and supports for caregiving, coordination with informal and formal networks, management of daily caregiving tasks, and responses to behavioral symptoms. Caregivers offered positive appraisals of technology, particularly if the benefit to themselves or the care recipient was evident. Caregivers indicated their comfort with and uptake of technology use was facilitated by familiarity with technology and social resources.

Table 2.

Common Technology-Based Tools and Resources Employed by Dementia Caregivers to Meet Caregiving Needs

Technology-Based
Tools and Resources		 Illustrative Quotes
Examples of technology used to communicate and coordinate with informal and formal care networks

  • Phones

  • Email

  • Social media

  • Internet

  • Online calendars

  • Online electronic health record charts

  • Microsoft Software

 Email to communicate and coordinate care with family

  • “So at that point we said, I said, and I just kind of directed it to my siblings through e-mail, and said, here, this is what took place, this is what I think we need to do. And, I mean, who’s going to argue with that, right?” – Participant 9


Social media to keep family up-to-date

  • “Then, and I use Facebook. That's how I keep in touch with all my kids and grandkids, and it's wonderful” – Participant 12


Microsoft Word to document medication and adverse health events with medical team

  • “I list what [medication/allergy] is, and what the problem was. So I have a pretty good history. Now the physicians have this too but they don’t’ have as much time. And I’ve found if I bring this in, that triggers memory and they know where to look.”- Participant 5


Cloud-based online calendar to communicate and coordinate care schedule and tasks among multiple family members

  • “But then we started using the Google Calendar for their schedules [brother & sister], because they did, my brother and sister alternated weekends. One weekend, one would do two nights, and one would do one night, Friday, Saturday, Sunday, and then they'd alternate the next weekend. One would do one night, and then one would do two nights. So they might write it on there that, you know, I have something to do.” – Participant 13

  • “I’ve also given them [siblings] the access to her charts online so if they so desired they could go in and check up on things” – Participant 9
Examples of technology used to support direct care

  • Wearable alert devices

  • Home security systems, including sensors, cameras, alarms

  • Phones

  • Telephone services available 24/7

  • Mobile applications

  • Phone alarms

  • Clocks

  • Video or television

 Security system to detect wandering

  • “Now we got a security system where it's on a speaker. The back door open, the back door not locked, or right at night, doors are closed. Doors are locked … we got, that's good technology right there. It's like, it's our intercom speaker, but it's hooked up to our security system. I know when the back door is open. I know when the side, the side door is open. I know when the basement door is open. I know when the kitchen door is open. I know when the front door is open from upstairs.” – Participant 20


Phone calls to ensure safety and provide reminders

  • “So I had to call one [neighbor] because I didn’t have her phone. She left her phone in the car. And I got to work. I call her every morning at 9:00. And it kept ringing and ringing. I went out and saw it was in my car. So I called my neighbors. And she’s going to flip out when she’s not hearing from me by 9:30. Can you please go over and tell her what’s going on. And I talked to her on the neighbor’s phone. And then I just drove home with her phone and gave it to her, so.” – Participant 17

  • “So, of course, I tried to use the phone. I’d call her [care receiver] about an hour before and say, you know you got a meal, you know you got a meal.” – Participant 1


Telephone line for assistance in a crisis situation

  • [Caregiver described use of crisis telephone line during] “Pressure situations when she [the care receiver] won’t let something go and just keeps on, keeps on, keeps on.” – Participant 17


Television for care recipient entertainment

  • “And so like the Packer games where she loves, you know, Aaron Rodgers and people like that, that's, she can keep track of that, because it's just those short intervals of plays” – Participants 10 and 11 (participated together)
Examples of technology used for information seeking

  • Internet

  • Television

 Internet for searching information

  • “Yeah, so I had to find a primary physician. So I did go online. And it said, ask the nurse. And so they gave me the list of the names. And, of course, all the female internists were not taking new patients, probably not” – Participant 6

  • “I think information, you know, going online and going to like the Alzheimer's site and, would have been, I, I'm, it would have been, it would have probably clued you in more what to expect in some ways.” – Participant 13

  • “I did an incredible amount of reading on the Internet. I looked up the, what’s the federal public health?… NIH, yes, I went on their website and ordered a dozen of their books on the disease to give to family and close friends, but, yeah, a lot of reading on the Internet. And went to, you know, the Mayo site, and other sites like that.” – Participant 5


Television for education on dementia

  • “Usually the PBS stations sometimes have shows on Alzheimer’s or dementia.” – Participant 7
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Theme 1. Everyday Technologies Adapted to Meet Specific Caregiving Needs.

Caregivers described adapting a variety of everyday technologies to meet their specific caregiving needs (Table 2). Across caregivers, there were common trends in the types of technologies used to meet distinct caregiving needs as driven by the technology function and the nature of the caregiving need. Most notably, caregivers described using communication technologies such as phones or email to facilitate care coordination within informal and formal networks. Also common were caregiver descriptions of pairing one or more common household technologies (e.g. clocks, television), wearable alert devices, or home security systems to support direct care and ensure safety. Finally, caregivers described meeting informational needs by searching the Internet.

Technology for Care Coordination.

Communication technologies employed by caregivers to coordinate care within informal and formal networks included phones, email, social media, online calendars, and online electronic health record charts (Table 2). Family caregivers described far more examples of using communication technologies to coordinate care with other family or friend members than with formal care providers. The latter required more specific prompting from the interviewer.

Caregivers most commonly described sharing communication updates with family or friends by phone and email, which represented easily accessible, household technologies for the caregiver. One participant stated: “I like to share with them the things that are going pretty well so that if there are some things that are, that will kind of ease their mind, that we 're in some ways doing better than they might expect. I like to share that with them to kind of relieve their burden ” (Participant 16). Some caregivers used more sophisticated technology-based tools to manage care within their informal care network, such as cloud-based software: “We started using the Google Calendar for their schedules, because they did, my brother and sister alternated weekends. One weekend, one would do two nights. And one would do one night, Friday, Saturday, Sunday. And then they'd alternate the next weekend” (Participant 13). One caregiver described ways in which communication technologies enabled the person with dementia to connect with the informal network in a vital way: “I think the biggest thing [related to care] is answering the phone when she calls. She does text and e-mail as well, so there's just the ongoing communication, I think, is probably the most important thing. Just whatever issue happens to come up that she knows that she can always get ahold of me ” (Participant 15).

Although few caregivers provided examples of using technology to communicate or coordinate care with formal providers, descriptions offered included the use of online health record charts with messaging features that allowed communication of medical information pertinent to the person with dementia’s care.

Technology for Direct Care.

When using technology to support direct care, caregivers described attempts to modify the environment for safety and supervision, provide medication and appointment reminders, manage caregiving crises and behavioral symptoms, and offer entertainment. Specific to direct care, caregivers described using a variety of technologies that ranged from basic, household technologies to more sophisticated systems and included wearable alert devices, home security systems, phones, mobile applications, phone alarms, and more. These technological supports were often used in combination to attempt to meet the caregiving need.

Technology for Information-Seeking.

Finally, caregivers described using the Internet to find information on dementia and related issues and resources. Use of Internet-based tools to find information was frequently in response to a specific question or event. For example, one caregiver used the Internet to find resources on one of the behavioral symptoms associated with dementia, specifically wandering: “I think we looked on WebMD and I think we went to the Alzheimer’s Association website ” (Participant 13).

Theme 2. Variable Technology Use Patterns According to Caregiving Need.

Caregivers’ use of technological supports occurred dynamically, often changing or adapting to the needs of the caregiver, person with dementia, or other caregivers in the family network. We identified two dominant technology use patterns characterized as 1) lengthy and informed by trial-and-error or 2) specific and intermittent. These technology use patterns were common across caregivers and driven by the nature and complexity of the caregiving need.

Trial-and-Error:

To support direct care needs such as medication reminders or behavioral symptom management, caregivers frequently described engaging in trial-and-error, which often took place over several days or even weeks. Caregivers highlighted frequent failures of the technology to meet their needs, followed by adaptations to find a “better fit.” For example, one caregiver described an unsuccessful attempt at using an iPad feature to support medication reminders: “I set my iPad up over there … when I'm trying to get her medicine because that’s got alarms, right?… I’d go over, the alarm would just be going. She didn’t even hear it” (Participant 1). This caregiver leveraged their experience to inform the next iterations of their technology use. In addition, some caregivers found through trial-and-error that multiple forms of technology were necessary to meet a single need. For example, one caregiver used a combination of clocks, alarms, and telephone calls to orient the person with dementia to time. Altogether, the technology use pattern of trial-and-error was shaped by the caregiving needs, e.g. a need to provide safety or manage medications, which fluctuated over time and perpetuated the need for adaptation.

Caregivers described the role of the person with dementia in the trial-and-error process of adapting technological supports. Specifically, caregivers described greater success in using technologies earlier in the person with dementia’s care trajectory to maintain independence in their home and support their care routine. Conversely, caregivers highlighted challenges with implementation of technology in later stages of dementia. For example, one caregiver described instances when the person with dementia forgot to press her wearable device alert when she needed help, and another caregiver shared about her difficulty in trying to encourage the person with dementia to use an iPad: “I’m wishing, I should have started her playing around on that iPad and doing stuff before she got it too bad” [referring to the dementia progression]. These challenges were met with patterns of trial-and-error to adapt the technological tools to the person with dementia’s strengths and limitations.

Specific and Intermittent Use:

In contrast, caregivers use of Internet-based tools to meet informational needs represented a distinct technology use pattern characterized as specific and intermittent. Though caregivers described the need for information on dementia and related issues and resources as critical to their caregiving role, this need was often specific in scope and short in duration. As such, caregivers responded by using Internet-based tools to meet these needs in a way that was specific to the problem or question and on an intermittent basis. For example, one caregiver described that: “Even if I have a problem that I’m dealing with, I’ll do an Internet search, how to deal with dementia and this issue, to see if there is a range of solutions out there that I can look at to see if there’s any help for me” (Participant 5). The nature of the caregiving need again drove the pattern of technology engagement. Additionally, use of Internet platforms by caregivers was most often performed independently, or with minimal support by a family member. One participant said: “Most of my information is, at least initially, obtained on the Internet doing Internet searches” (Participant 5). Another stated: “Mayo Clinic has an online, not a program but a website that was helpful. Sometimes WebMD I think has, and so I would use that sometimes. When I just, when she was diagnosed with Alzheimer’s, they were very helpful through the university, but I would also do some independent looking on my own time that I could take my time to absorb it and understand it better” (Participant 9).

Theme 3. Perceived Utility, Familiarity, and Social Resources Influenced Caregivers’ Appraisal of Technological Supports.

Despite variation in experiences with technology, all caregivers responded positively to questions regarding the current and potential use of technology to support caregiving, describing the role of perceived utility, familiarity, and social resources in their technology acceptance and adoption. When speaking of current use of technology, caregivers highlighted the potential utility, particularly around facilitating communication: “Well, being at my age, I’m happy to be able to use the e-mail and the phone … And I can email both [my daughter and the sister]” (Participant 7). Another caregiver stated: “think the e-mail and the charts that are accessible online is amazing and is so very helpful” (Participant 8). Caregivers also responded positively to the use of hypothetical technology to support caregiving, and several caregivers offered ideas for technological innovations. For example, one caregiver saw the potential for family networks to be harnessed via technology, again highlighting the potential utility of technology: “If a family were to put together an app that says, you know, when in need or if you need somebody to water the grass, you know, I’m available. To let them know that these are the things that I can do for you” (Participant 19). Participants 10 and 11, who interviewed together, suggested technology be developed to support direct care, for example answering common questions that their care recipient asks: “This idea I had in the last 24 hours is you could actually have some kind of device, I don’t know what the design would look like but there’s probably four questions that all people ask, you know, what’s happening today, or what’s happening next, or why am I here, or where is…” Further, Participant 1 saw the potential of emerging technology to overcome barriers to traditional technology that occur with progression of dementia: “You know that Amazon Echo? I think that has real potential for somebody that has Alzheimer’s. Because my mother can no longer, you know, sometimes she can’t see a phone to dial it, but if she could just say, call, and somebody would do that for her, you know, that would be fantastic.”

Finally, caregivers felt that familiarity with technology played a role in their use and appraisal of technology. At least two caregivers had professional experience with technology in the areas of website design or maintenance: “I mean, the job I work at is technology. And I’m constantly having to learn every day more and more as I’m going” (Participant 17). Participants also described ways that social resources, particularly family members’ familiarity with technology, could be supportive of their use of technology: “But, you know, my brother was in town, so he could stop in and things. And he did a lot with the technology ” (Participant 13) and “I'm going to have my 13-year-old granddaughter help with my iPad” (Participant 12). A number of caregivers also felt familiarity was linked to age: “I mean, I’m not a young guy, and I’m not a technical savvy guy. I just look down the road and go, that’ll be different for my kids when they ’re trying to wrestle with me. They’re much more technically savvy than I” (Participant 9). Altogether, across caregivers, perceived utility, familiarity, and social resources supported acceptance and adoption of current technological supports, along with caregivers’ perceptions and suggestions for hypothetical technologies.

DISCUSSION

The purpose of this study was to explore family caregivers’ everyday use and appraisal of technological supports to support their caregiving role. We found that family caregivers used a variety of technological supports to meet their specific caregiving needs (e.g., care coordination, information-seeking, and direct care), and that the nature of their caregiving needs influenced the technological supports that were selected. Additionally, we found that caregivers may already be driving technology use patterns in innovative ways to meet caregiving tasks. Caregivers also described the role of perceived utility, familiarity, and family resources in their acceptance and adoption of technological supports. Taken together, the implication of these findings is that family caregivers’ needs, technology preferences, and patterns of technology use should be considered during the design and delivery of technology intended to support them. This implication adds to earlier studies in which researchers have reported that the design and implementation of technological tools should focus on meeting tangible caregiving needs. 21,24-26

Further, our findings can be used to inform design and validation of standardized technology use preferences and need profiles that can be harnessed to improve functionality and adoption of specific supportive technologies for family caregivers. In our study, family caregivers described common patterns of technology use, which were driven by the nature of the caregiving need, including patterns that were lengthy and informed by trial-and-error and patterns characterized as intermittent and specific in scope. Few prior studies have reported on family caregiver technology use patterns. However, what study findings show in common is the high degree of ingenuity applied by family caregivers in meeting caregiving needs. For example, Gibson et al. found caregivers use multiple types of technology in unconventional manners in what they refer to as bricolage.11,18 Through our findings, we provide multiple new, critical insights on caregiver routines and habits that can be harnessed by technology developers, researchers, and practitioners during the design and delivery of technology. Technological tools and technology-based interventions that complement rather than overhaul caregiver patterns and routines may foster more immediate acceptance and long-term adoption.37

We also found that caregivers rated perceived utility, familiarity, and family resources as factors influencing their acceptance and adoption of current and future technological supports, with multiple implications for promoting greater uptake of technology among family caregivers. Through our findings, we confirm reports from other studies, which have demonstrated that perceived utility and familiarity with technology promote acceptance of technology. 38-40 The results of this study can be used to expand our knowledge on factors influencing technology acceptance and adoption, highlighting the need to both clearly demarcate the utility of the technological tools and determine social resources within the informal network to enhance technology adoption for network members. For example, “technology-savvy” informal network members can champion technology use not only for network members but also for the person with dementia at the center of the network. 11,20

Based on our findings, we propose several directions for potential future research. Though not part of our primary study objectives, we identified multiple gaps within family caregivers’ current use of technological tools to support their caregiving needs. These gaps can serve as targets for improved support from technology developers, researchers, and practitioners. For example, caregivers only provided a few examples of using technology to communicate and coordinate care with formal care providers. Therefore, future research might examine family caregiver perceptions on the use of technology to communicate with formal care networks and on mechanisms for integrating communication with formal care networks into existing technological platforms. Future studies should also be sensitive to ways in which increased communication and coordination with formal care networks may lead to increased demand for family caregivers and present technological innovations that seek to reduce the effort presented through caregiving in teams. 41

Second, similar to other qualitative studies, we found that caregivers often supported their needs with commercially available technology products, with little integration of specialized, healthcare or research-driven products.11 Although we found that caregivers are resourceful in adapting everyday technologies to their caregiving needs, there may be instances in which a specialized technological tool would be more efficient or effective. Specialized technologies could be designed to address caregivers’ lengthy, and at times frustrating, patterns of trial-and-error, their use of multiple forms of technology simultaneously, and their need to adapt technological supports over time. For example, technology-based interventions could use evidence-based structured guidance and responsive features to enable family caregivers in their pursuit to meet complex, fluctuating caregiving needs.

Our findings should be interpreted with certain limitations in mind. First, although we were successful in recruiting a socioeconomically diverse sample, our study sample ultimately reflected the population of mostly white caregivers residing in the Midwest. The findings must be examined with expanded cohorts. Future work should include a more racially and geographically diverse sample to provide greater insight into the preferences of a broader population of dementia caregivers in using technology to support care. In addition, we did not document the number and demographics of individuals reached by each recruitment mechanism but not consented, limiting our ability to analyze the effectiveness of each recruitment mechanism or the demographics of participants who declined participation. Second, the study is limited by methodological challenges related to the lack of common, standardized terminology for describing technological supports. To ensure technology-based interventions are effective and inclusive, additional research is needed on caregiver use of and attitudes about technology, key differences between caregiver groups, and the consideration of these factors during technology-based intervention trials. Third, we only included the self-described primary caregiver in our study. Although our participants described how people with dementia they were caring for used technology, we did not systematically collect descriptive information on the person with dementia’s extent of involvement in technology use or the manner in which cognitive impairment may or may not affect their technology use. A critical next step to address this would be to explore the technology use patterns and appraisal of people with dementia and experiences of caregiver and person with dementia dyads. In addition, expanded research is needed to better understand the use of technology among multiple members of a family caregiving network.

CONCLUSION

Through our study findings, we offer valuable initial insights into family caregivers’ current use of technology to meet caregiving needs, including their technology use patterns and the factors that influence their appraisal of technological supports. Our findings have multiple implications with immediate relevance for technology developers, researchers, and practitioners who seek to design and apply technological supports to meet family caregivers’ preferences and practices. Future research on caregiver technological supports must identify and highlight end-user perspectives early on to increase uptake and effectiveness of technological supports long-term.

Highlights.

  • Family dementia caregivers described use of several everyday technologies

  • In this sample, common technology use patterns were shaped by the caregiving need

  • Perceived utility, existing familiarity, and social resources promoted technology use

  • Caregiver perspectives must be harnessed in the design and delivery of technology

Acknowledgments

Funding: This work was supported by the National Science Foundation [CISE CHS CRII 1656927], the Wisconsin Alzheimer’s Disease Research Center, the University of Wisconsin Community-Academic Aging Research Network (CAARN), and the Clinical and Translational Science Award (CTSA) program through the National Institutes of Health National Center for Advancing Translational Sciences (NCATS) [grant 1UL1TR002373 and KL2 grant KL2TR002374] (Werner). This work was supported by the National Institute on Aging of the National Institutes of Health [Award Number K76AG060005] (Gilmore-Bykovskyi). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Footnotes

Declaration of Conflicting Interests: The authors declare that there is no conflict of interest.

IRB Protocol Number: University of Wisconsin-Madison Health Sciences Institutional Review Boards Protocol Number 2016-0185

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