key: cord-0934409-k4twaa05
authors: Albers, Elizabeth A; Mikal, Jude; Millenbah, Ashley; Finlay, Jessica; Jutkowitz, Eric; Mitchell, Lauren; Horn, Brenna; Gaugler, Joseph E
title: The Use of Technology Among Persons With Memory Concerns and Their Caregivers in the United States During the COVID-19 Pandemic: Qualitative Study
date: 2022-03-17
journal: JMIR Aging
DOI: 10.2196/31552
sha: 092581b4d9b65657baf175f6f58196087b4446f8
doc_id: 934409
cord_uid: k4twaa05

BACKGROUND: Stay-at-home orders and other public health measures designed to mitigate the spread of COVID-19 have increased isolation among persons with memory concerns (PWMCs: individuals diagnosed with cognitive impairment or Alzheimer disease or related dementias). The pandemic has also exacerbated challenges for family members who care for PWMCs. Although technology has demonstrated the potential to improve the social connections and mental health of PWMCs and their family caregivers (CGs), previous research shows that older adults may be reluctant to adopt new technologies. OBJECTIVE: We aimed to understand why and how some PWMCs and their CGs altered their use of mainstream technology, such as smartphones and fitness trackers, and assistive technology to adapt to lifestyle changes (eg, increased isolation) during the COVID-19 pandemic. METHODS: Using data collected in 20 qualitative interviews from June to August 2020 with 20 PWMCs and family CG dyads, we assessed changes in and barriers to everyday technology use following the implementation of COVID-19 mitigation strategies in the United States. Zoom videoconferencing was utilized to conduct the interviews to protect the health of the participants who were primarily older adults. RESULTS: Using qualitative thematic analysis, we identified 3 themes that explained motivations for using technology during a pandemic: (1) maintaining social connections, (2) alleviating boredom, and (3) increasing CG respite. Results further revealed lingering barriers to PWMC and CG adoption of technologies, including: (1) PWMC dependence upon CGs, (2) low technological literacy, and (3) limitations of existing technology. CONCLUSIONS: This in-depth investigation suggests that technology can provide PWMCs with more independence and offer CGs relief from CG burden during periods of prolonged isolation.

Persons with memory concerns (PWMCs: individuals formally diagnosed with mild-to-moderate cognitive impairment or Alzheimer disease [AD] or Alzheimer disease-related dementias [ADRD] ) and their family members who care for them experience significant challenges in their daily lives. Before the COVID-19 pandemic, PWMCs were likely to experience social isolation as changes in memory, social roles, and personality occurred [1] . Family caregivers (CGs) of PWMCs also had an increased risk of social isolation before the pandemic [2] .

COVID-19 is a respiratory illness spread mainly through respiratory droplets and direct contact that is more likely to result in severe illness or death for older adults. Due to the unknown nature of COVID-19 at the time and rapid global spread, many services such as in-home aides and adult day services quickly closed at the onset of the pandemic [3] . This sudden absence of or disruption to home-and community-based services shifted the burden of continuous and comprehensive care to family CGs and intensified their existing challenges [4] [5] [6] . Since the onset of the pandemic, research has shown that CGs of PWMCs have experienced increased stress related to the exacerbation of PWMCs' behavioral, psychological, or dementia symptoms [5] . The increased burden and stress family CGs experienced during the initial stages of the pandemic were related to the amount of social support they received, the level of help the PWMCs required to complete activities of daily living, and the level of CGs' concern about the pandemic [7, 8] . Throughout the course of the pandemic, many CGs have indicated concerns about a rapid decline in the cognitive functioning of PWMCs, due, in part, to the lack of social interaction [9] .

Various types of technology have been used in research with PWMCs and family CGs. Assistive technology, designed specifically to assist PWMCs and their CGs perform a task, is associated with improved cognitive abilities and increased autonomy among PWMCs [10] . Mainstream technologies, such as Zoom or fitness trackers, also offer benefits to this population, such as by supporting social and physical functioning [11] . The use of technology to communicate with friends and family members allows for social connection while social distancing. Remote socialization, such as through web-supported Zoom videoconferencing, is associated with increased positive emotions and decreased agitation among PWMCs [10] . Information and communication technology use is positively associated with social connection and social support, as well as reduced social isolation among older adults [12] .

In a prior study, 71% of CGs expressed interest in technology to support caregiving tasks [13] . However, interest in any given technology does not guarantee adoption. A technology's perceived value and perceived impact on quality of life, an individual's confidence in their ability to learn the technology, and social network support of technology use are key hurdles that influence technology adoption in this population [14, 15] . Additionally, adoption of technologies for PWMCs and their CGs tends to be low due to barriers such as cost, complexity, inflexibility, a lack of awareness, and even age, income, and education [11, 16, 17] .

During the COVID-19 pandemic, particularly during stay-at-home orders, the use of technology was necessary to sustain social connection and physical and mental health. Public health measures, such as social distancing, may have altered the perceived value of certain technologies on quality of life among many community-dwelling PWMCs and CGs. For example, telehealth medical visits were deemed feasible and acceptable to PWMCs and their CGs during the pandemic [18] . Social network support may have further influenced the uptake of certain technologies during the pandemic to maintain social connections. Therefore, previously identified barriers to technology adoption could have been outweighed by the increased social isolation and desire to maintain health among some PWMCs and their CGs.

The aim of this study was to investigate how and why some PWMCs and their CGs living in the community changed their mainstream and assistive technology use during the COVID-19 pandemic in the United States. Additionally, we aimed to understand how some PWMCs and their CGs used technology to adapt to isolation during the pandemic.

In total, 20 PWMCs and their CGs who lived in the community were recruited in the United States to assess (1) how their technology use shifted in response to the COVID-19 pandemic and (2) the impact that shift had on social isolation. Each PWMC-CG dyad was recruited to participate in a semistructured qualitative interview over Zoom videoconferencing. Although Zoom interviews were utilized to protect the health of older adult participants who were more likely to develop severe illness if they contracted COVID-19, this may have introduced selection bias by only including more technologically literate participants who could use Zoom [3] . Selection bias is discussed further in the Discussion section. Participants were recruited through the University of Minnesota Caregiver Registry, a list of family members of PWMCs and health professionals who have agreed to learn about research participation opportunities available on behalf of the senior author's project team. We emailed all individuals in the registry, inviting them to participate in the study. Participants were also recruited through email advertisements in professional networks and at memory clubs and adult day programs for PWMCs.

To be eligible to participate, the PWMCs had to speak English, have no history of a serious mental illness (ie, any major psychiatric disorder), and have a diagnosis of AD/ADRD or mild-to-moderate cognitive impairment by a physician. To be eligible, CGs had to speak English, be 21 years of age and over, and self-identify as someone who assists the PWMCs because of their memory loss. Because the interviews were conducted via Zoom, 3 dyads were considered ineligible since neither member of the dyad had access to a working web camera and microphone. One dyad was ineligible because the PWMC had never received a formal diagnosis of AD/ADRD or cognitive impairment. Figure 1 describes study participant flow. In total, 40 participants were enrolled and participated in the dyadic interviews conducted by authors EA and AM. The study was approved by the University of Minnesota Institutional Review Board (STUDY00006318). 

Qualitative interviews were conducted from June 25 to August 6, 2020. Before an interview began, the CGs and PWMCs had to provide verbal consent or assent. PWMCs' capacity to consent was evaluated by administering the Mini-Cog and the University of California, San Diego (UCSD) Brief Assessment of Capacity to Consent (UBACC) [19, 20] . The PWMCs provided verbal consent if they had a Mini-Cog score of 3 or higher and a UBACC score of 14.5 or higher. PWMCs provided verbal assent if they scored 2 or lower on the Mini-Cog or less than 14.5 on the UBACC. Once consent or assent was obtained, we administered a brief survey to CGs and PWMCs to determine age, sex, race, ethnicity, education, income, employment status, living arrangement, relationship to each other, and disease progression of the PWMCs.

Qualitative interviews adhered to a semistructured protocol focusing on 4 major topics: (1) technology use pre-COVID-19, (2) technology use during the COVID-19 pandemic, (3) adoption of specific technologies during the pandemic, and (4) facilitators and barriers to technology adoption. See Multimedia Appendix 1 for the semistructured interview questions. Interviews were audio-recorded, and direct observation notes were completed within 24 hours of each interview to document impressions of the participants' location, level of comfort with Zoom technology, any nonverbal behaviors of importance, and how the PWMCs and CGs interacted.

Audio recordings were professionally transcribed and organized in NVivo 12 (QSR International). Interview transcripts and direct observation notes were thematically analyzed using Braun and Clarke's 6 steps of thematic analysis: (1) familiarization, (2) generation of initial codes, (3) search for themes, (4) review themes, (5) define and name themes, and (6) write-up of themes analyzed [21] . An iterative process was followed to continually identify themes, linkages, and explanations, which were compared to create a codebook. Researchers then identified textual elements that emerged repeatedly (ie, codes); these codes were clustered into larger categories that were used to construct major thematic elements from the text. All authors reviewed the codebook to refine and clarify codes and themes. Next, EA and AM independently coded a subset of the interviews and revised the codebook after comparing codes and discussion with the full authorship team. EA coded the interview transcripts, and author JM reviewed the coded material and revised it, as necessary, to ensure accuracy and replicability. The iterative process of developing codes and themes ensured that saturation was achieved and the data were characterized appropriately. Peer debriefing, negative case analysis, and clear audit trails enhanced transparency and rigor in the analysis [22] .

In total, 20 dyads participated in the study (Table 1) . Most PWMCs were male (14/20, 70%), and most CGs were female (14/20, 70%). In addition, 16 (80%) of the 20 dyads were spouses/partners, while the other dyads were siblings or parents/adult children. Furthermore, 18 (90%) of the 20 PWMCs lived with their CGs. Half (n=10) of the PWMCs were diagnosed with AD or early-onset AD, 6 (30%) were diagnosed with mild cognitive impairment, and the remaining 4 (20%) were diagnosed with other types of memory loss. 

Overall, 6 themes were identified that highlight why and how CGs and PWMCs altered their technology use during the COVID-19 pandemic. We present them in 3 groups: (1) facilitators of technology use, (2) barriers to technology use, and (3) overcoming challenges. Technological devices commonly used by participants were smartphones, smartwatches, computers, tablets, smart TVs, and assistive technology designed for PWMCs, such as pill dispensers.

Due to stay-at-home orders and other public health measures to reduce the spread of COVID-19, PWMCs and CGs experienced physical and social isolation. Engagement with technology alleviated some of the negative outcomes of isolation by (1) sustaining social connections, (2) reducing boredom, and (3) increasing CG respite. These themes are presented with quotes and associated pseudonyms in Table 2 and discussed in more detail later. 

Managing the COVID-19 pandemic in conjunction with caring for someone with memory concerns presented its own set of challenges, as did using new technology. Barriers that impacted CG and PWMC technology use included (1) limitations of existing technology, (2) technological literacy, and (3) the dependence on CGs to use technology. These themes are presented with quotes and associated pseudonyms in Table 3 and discussed in more detail later. 

Most technologies were not designed to suit the needs and abilities of PWMCs. Challenges for PWMCs using CMC included the absence of nonverbal cues, system lag-time issues, and difficulty learning, which resulted in less satisfaction in social interactions while using the technology. CMC can cause PWMCs to become confused or frustrated due to the lack of nonverbal cues and lag-time issues. Peggie (F, 60 years, CG) explained that Although some technologies were designed for PWMCs, a few CGs expressed that they were still too complicated and caused stress and confusion. Peggie shared that her husband's memory loss support group was over the phone because the group members were unsuccessful in joining the videoconference due to difficulty learning new technology. Dementia severity impacted the ability to learn new technologies and limited the types of technologies that were useful to PWMCs.

CGs and PWMCs in the sample varied in their familiarity and comfort with technology; some participants felt well versed or tried to stay up to date on new technologies, while others tried to avoid using any and did not stay up to date. Rick (M, 73 years, CG) explained that 

Over half of the dyads shared various ways in which the PWMC was dependent on the CG to utilize technology. Annmarie (F, 73 years, CG) would completely set up Zoom so the PWMC could use it, while other PWMCs used technology independently and relied on their CGs only when problems arose, such as a screen going blank. Some CGs like Peggie (F, 60 years, CG) expressed a desire for the PWMCs to be more independent using technology:

I would really love it if he didn't have to say, "Peggie, can you come help me make this happen?"

To maintain a technology's usefulness, a CG had to be readily available, have time to teach the PWMC how to use it, and reinforce its use.

Participants who were motivated to try a new technology and overcame the associated challenges reported increased social connection, reduced the caregiving burden, and, in some instances, increased PWMC independence. Some CGs began using technology to promote learning and cognitive engagement among their relatives during the pandemic. These fragments of increased PWMC freedom were able to slightly reduce caregiving burden despite increased stress and isolation.

The COVID-19 pandemic forced a shift in technology adoption for those who were fortunate enough to have access to it. Yet, CGs and PWMCs were not always willing to try new technology to assist them due to barriers such as each person's level of technological literacy, the dependence on the CG for use, and limitations of the technology. For CGs and PWMCs who adopted new technology or adapted existing technology, technology was perceived as more useful during the pandemic than before, specifically in relieving boredom, maintaining social connections, and increasing CG respite.

Our research affirms that social network support, perceived value, perceived impact on the quality of life, and confidence in the ability to learn a new technology are all important influences of technology adoption [14, 15] . Each of these influences played a role in technology adoption among PWMCs and CGs during the pandemic. Our research also highlights the role of technology in reducing the caregiving burden during the pandemic, along with increasing PWMC independence. GPS technology seemed to minimize CG stress by reducing the likelihood of PWMCs getting lost [23] . Similar to findings by Øderud et al [24] , our research also shows that GPS technology provides CGs with respite time, while allowing PWMCs to enjoy their freedom and outdoor activities safely.

Studies suggest that assistive technology can reduce the caregiving burden yet may also pose an additional burden when technology adoption and use require too much CG help [25] . Such results are consistent with our findings that CGs are unlikely to adopt burdensome technology. In a review of 56 studies, assistive technology was perceived as removing CG stress and burden overall, although no significant change in the caregiving burden was reported in any of the 16 (29%) quantitative studies included in the review [23] . This discrepancy in CG burden results may be due to insensitivity of existing quantitative outcome measures [26] . Perhaps alternatively, no single device or app is comprehensive enough to reduce the caregiving burden, and instead, a combination of technologies is required to significantly reduce burden.

Technology can foster social connections for CGs and PWMCs by counteracting the impact of diminished social support and interactions during the pandemic. A systematic review of 25 publications concluded that information and communication technologies (ICT) can be an effective way of reducing social isolation among older adults; however, it is not suitable for all older adults [12] . Prior to the pandemic, technological interventions to reduce social isolation were understudied [27] . Not only are more ICT interventions being developed to reduce loneliness and increase social participation during the pandemic, but older adults also have a more positive view of ICT interventions now in contrast to before the pandemic [28] . Preliminary findings are showing promising results; in a qualitative study, researchers demonstrated that virtual memory cafés, where PWMCs and CGs remotely interact with other PWMCs and CGs, were able to support the social connectedness of PWMCs and CGs during the COVID-19 pandemic [29] .

The findings emphasize the importance of incorporating technological barriers of PWMCs and their CGs into the design process. Although dependence on the CG to use technology cannot be eliminated entirely, it should be avoided or minimized through mindful design. Therefore, it is important to engage both the PWMC and the family CG during each stage of the design process. Additionally, it is likely not feasible for technology developers to improve a users' technological literacy. However, testing new products by CGs and PWMCs at various stages of dementia progression could highlight difficulties for less technologically literate users. This codesign process is important for any technology used by older adults yet is most important for technology designed specifically for PWMCs.

Limitations of this research include factors that may make the study population different from the general population. Participants were recruited through email, and they had to be willing and able to participate in interviews over Zoom, which could have led to selection bias. Participants may be more likely to use Zoom and other technologies than individuals who would have only been recruited in a nontechnological manner or did not have the capability to participate in a Zoom interview. Since income, education, and race/ethnicity are major influences of technology adoption, it is important to note that this sample was highly educated, had a median income higher than the national median income, and primarily identified as non-Hispanic White [30] . Additionally, we did not include PWMCs living in long-term care, and no PWMCs were in the later stages of dementia. Due to these differences, participants in this study may have different patterns of technology use/disuse compared to other CGs and PWMCs, all of which likely limit the generalizability of the findings. The results are hypothesis generating, and future research should engage a more racially and ethnically diverse population of CGs and PWMCs and include participants with lower incomes, educational attainment, and technological literacy.

This research contributes to the literature on this population's technology usage. Much of the existing literature focuses solely on assistive technology, while our research points out that mainstream technologies, such as smartphones or Zoom, were predominately used by this sample. Further research is needed to examine how mainstream technologies are used to support PWMCs and CGs in their everyday lives and to compare whether those who adopted more technology during the pandemic coped better with isolation than those who did not alter their technology usage.

Our research found that the COVID-19 pandemic resulted in an increase in technology use among many participants. These findings emphasize the importance of technology use among CGs and PWMCs, particularly during isolation, to provide relief from caregiving burden and afford PWMCs more independence.

The impact of memory change on daily life in normal aging and mild cognitive impairment

Chronic stress, social isolation, and perceived loneliness in dementia caregivers

Clinical features and outcomes of COVID-19 in older adults: a systematic review and meta-analysis

JMIR Aging 2022 | vol. 5 | iss. 1 | e31552 | p

Alzheimer's disease facts and figures

SINdem COVID-19 Study Group. Behavioral and psychological effects of coronavirus disease-19 quarantine in patients with dementia. Front Psychiatry

Telehealth for the cognitively impaired older adult and their caregivers: lessons from a coordinated approach

The psychological impact of COVID-19 pandemic and lockdown on caregivers of people with dementia

Dementia caregiving during the "stay-at-home" phase of COVID-19 pandemic

Understanding the impact of the COVID-19 pandemic on well-being and virtual care for people living with dementia and care partners living in the community

Evaluating the facilitators, barriers, and medical outcomes commensurate with the use of assistive technology to support people with dementia: a systematic review literature. Healthcare (Basel)

Technology and dementia: the future is now

The effect of information communication technology interventions on reducing social isolation in the elderly: a systematic review

A guide for innovators -research from a nationally representative sample of America's 40 million family caregivers. Caregivers & Technology: What They Want and Need

Factors predicting decisions about technology adoption among older adults

Factors supporting the use of technology in daily life of home-living people with dementia

Perspectives of stakeholders on technology use in the care of community-living older adults with dementia

Tech Adoption Climbs among Older Adults

A systematic review of telemedicine for older adults with dementia during COVID-19: an alternative to in-person health services? Front Neurol

The Mini-Cog as a screen for dementia: validation in a population-based sample

A new brief instrument for assessing decisional capacity for clinical research. Arch Gen Psychiatry

Using thematic analysis in psychology

Designing Qualitative Research, 6th Edition

Location-based technologies for supporting elderly pedestrian in "getting lost" events

Persons with dementia and their caregivers using GPS

Assistive technologies in reducing caregiver burden among informal caregivers of older adults: a systematic review

Informal carers' experience of assistive technology use in dementia care at home: a systematic review

Interventions targeting social isolation in older people: a systematic review

Trends and effectiveness of ICT interventions for the elderly to reduce loneliness: a systematic review

We don't feel so alone": a qualitative study of virtual memory cafés to support social connectedness among individuals living with dementia and care partners during COVID-19. Front Public Health

Race, place, and information technology

This work was supported by a grant from the National Institute on Aging (R44AG063683). The sponsor did not review or approve the manuscript prior to publication. JEG obtained funding. JEG, JF, EJ, and LM developed and refined the methods. EAA and AM coordinated the study and collected the data. EAA and JM read transcripts and performed the analysis. EAA, JM, and AM completed the manuscript. All authors provided feedback and refined the manuscript. The authors have no financial interest in the study. The authors would like to acknowledge Gary Havey of Advanced Medical Electronics. The authors would also like to particularly acknowledge the participants who contributed their valuable time to this study.

None declared. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Aging, is properly cited. The complete bibliographic information, a link to the original publication on https://aging.jmir.org, as well as this copyright and license information must be included.