Technology that CARES: Enhancing dementia care through everyday technologies

Abstract

“Everyday technologies” have long been suggested as digital tools to improve life for and enhance care of persons with Alzheimer's disease and related dementias (ADRD). Within this realm, there is a need to balance potential drawbacks of technologies with their ability to positively impact patient and care partner centered outcomes. To facilitate this goal, we endeavored to provide a common language and conceptual structure to understand digital technology use in ADRD care. Specifically, we describe the pathways by which researchers might develop and deploy technology, including via Cognitive offloading, Automation, Remote monitoring, Emotional/social support, and Symptom treatment (CARES). In addition, we highlight emerging issues in technology-based care research and provide relevant caveats regarding application of digital technologies in the real world. This discussion provides a framework to organize science on the application of technologies to ADRD care in the future.

Highlights

• “Everyday technologies” have long been suggested as digital tools to improve life for and enhance care of persons with Alzheimer's disease and related dementias (ADRD).
• However, the potential benefits of digital technologies must be balanced against their possible drawbacks.
• We describe the pathways by which researchers might develop and deploy technology that CARES, including via Cognitive offloading, Automation, Remote monitoring, Emotional/social support, and Symptom treatment.
• This discussion provides a framework to organize science on the application of digital technologies to ADRD care in the future.

1 EVERYDAY TECHNOLOGIES IN THE CARE OF PERSONS WITH ADRD

In 2007, Dishman and Carrillo¹ published a perspective outlining how the growth in availability of “everyday technologies” might transform the care of people with Alzheimer's disease and related dementias (ADRD). There was an associated funding effort called The Everyday Technologies for Alzheimer's Care initiative to encourage research on this topic. A 2009 summary of progress from this initiative highlighted how home computers, cellular devices, and broadband Internet were increasingly used by middle-aged and older adults and that such technologies might improve diagnostic accuracy, enhance tracking of disease progression, advance symptom treatment, and reduce strain on care partners.²

Application of technologies to support care partners is of particular importance, given the central role they play in the lives of people with ADRD. Friends and family members are involved in providing care in 90% of dementia cases.³ These unpaid individuals make contributions valued at $339.5 billion per year, assisting with basic and instrumental activities of daily living and coordinating care of persons with ADRD across multiple settings.⁴ Though care partners find value in this role, they also experience more financial problems, reduced physical health, poorer sleep quality, and higher rates of mental illness than counterparts not involved in care.^{5, 6}

After more than a decade of additional investment and research, there has been great growth in the availability of technological supports for care partners to people with ADRD.⁷ Further, there is now an entire scholarly area dedicated to validating digital biomarkers that could enable rapid, widespread diagnosis and symptom monitoring.⁸ Finally, technologies have been used as innovative means of delivering existing interventions (e.g., adapting multimodal risk reduction programs to the Internet or computers),⁹ as well as development of novel treatment approaches (e.g., technology skills training to improve daily functioning).¹⁰

Still, it remains difficult to judge the potential benefits of digital technologies against their possible drawbacks. One well researched concern about technology use among those with ADRD is increasing vulnerability to scams or fraud.¹¹ However, scholars have raised broader issues with the use of digital technologies for human development and quality of life in general,^{12, 13} as well as more specifically for older adults.^14-16 While further research is required to fully understand how these concerns may apply to persons with ADRD, many seem relevant to this population. They include assertions that technology use might (1) decrease cognitive engagement, leading to a diminishing of cognitive skills (e.g., reduced route finding abilities due to use of Global Positioning System [GPS]); (2) serve as a distraction, causing absent-mindedness and reduced recall of information (e.g., focusing on the television or phone instead of engaging with the environment); (3) decrease social engagement (e.g., obsession with web surfing or video games in place of meaningful personal interactions); and (4) disrupt sleep (e.g., screen time prior to bed leading to increased sleep latency).

In summary, application of technologies to ADRD care requires a delicate balance of tradeoffs to achieve maximum benefits for patient and care partner centered outcomes. In this perspectives paper, we propose a conceptual structure for the pathways by which technology may positively impact ADRD care, including via Cognitive offloading, Automation, Remote monitoring, Emotional/social support, and Symptom management (CARES). In short, we outline how the field can develop and implement technology that CARES (Figure 1).

FIGURE 1

Potential pathways by which technology-based strategies may enhance care partner well-being and ease care strain.

2 PATHWAYS AND OUTCOMES BY WHICH TECHNOLOGY CARES

Caregiving is multi-faceted, with the actual needs of care depending on the underlying illness, stage of the disease, care environment, and other factors.¹⁷ As a result, part of developing a comprehensive framework for technology in caregiving requires one to identify the most common pathways by which existing digital technologies can influence care, as well as the specific outcomes that should be influenced by technology-based interventions. Below, we review five core pathways by which technology may improve caregiving, as well as potential outcome measures for evaluating the impact of technology on care. For a brief summary, see Table 1.

TABLE 1. Potential pathways by which technology may improve caregiving with examples and potentially associated outcome measures.

Pathway	Example technology	Potential outcome measures
Cognitive offloading	Voice command: “Remind me to give Dad his medications at 9:00 PM” and provide a push notification at that time	- Adherence rates for medication administration - Measures addressing subjective caregiver cognitive burden
Automated task management	- Having groceries delivered via an app - Placing bills on autopay	- Time spent caring - Scales measuring the Impact of DEmentia on CARers - System Usability Scale
Remote monitoring and intervention	- Bed sensors - Depth cameras tied to safety alerts and healthcare support	- UCLA Loneliness Scale (for care partners) - Safety measures (e.g., falls, episodes of wandering)
Emotional/social support	- Brain CareNotes: Smartphone application with 24/7 access to resources and experts - Online caregiver support groups - Non-profit web pages	- Patient Health Questionnaire-9 (for care partner) - Dementia Care Knowledge Assessment - Quality of Life in Alzheimer's Disease scale
Symptom treatment	PARO: Animatronic social robot	- Neuropsychiatric Inventory Questionnaire - Burden Scale for Family Caregivers

First, cognitive offloading is defined as moving a mental intention for a task or activity onto a physical or digital memory aid.¹⁸ Smartphone personal assistant applications provide one digital method for accomplishing this goal in persons with mild severity ADRD.¹⁹ Such applications will digitally store to-do lists and provide automated reminders to facilitate task completion by individuals with ADRD.

These approaches could readily scale to caregiving. To provide a concrete example, the Apple iOS Siri application can receive the voice command, “Remind me to give Dad his medications at 9:00 PM,” store this intention in digital memory, and then provide a push notification at the specified time. Using such a strategy, care partners would not have to rely on their own memory retrieval processes to remember to administer medications. Such digital strategies could address the burden associated with the “double to-do list” phenomenon of caregiving, in which care partners not only have to remember to complete tasks important in their own daily lives but also those of the person with ADRD.²⁰

Outcomes for cognitive offloading interventions could include specific behavioral markers, such as adherence rates for medication administration. Additionally, a cognitive offloading intervention might help to address subjective caregiver cognitive burden (i.e., the “mental load” of caregiving). Such cognitive burden is under studied; despite clinical experience that cognitive demands are common and distressing in caregiving, this phenomenon is not indexed by existing scales of care burden.²¹ This gap in understanding could be remedied by modifying existing caregiver burden measures or creating new ones specific to cognitive burden.

Second, digital technologies can facilitate automated task management. Managing time is a key concern for care partners of people with ADRD: On average, they spend nearly 36 h per week providing care,²² amounting to a near full time job on top of other work and personal responsibilities. Technologies might assist care partners with minimizing the time spent in caring tasks, such as shopping for groceries and assisting with financial management activities. To provide two examples, having groceries delivered via  an app (e.g., Instacart) could eliminate the need for a shopping trip, and placing bills on autopay might reduce time spent handling finances.

Correspondingly, outcome measures could include behavioral markers, such as time spent in caring. Traditional measures of direct impact of caring would also be applicable to this pathway (e.g., Scales Measuring the Impact of Dementia on CARers²³ Direct Impact subscale). Of course, it should be acknowledged that attempts at automation could also conceivably increase burden if the technologies were too difficult to use, produced unreliable outcomes, or were otherwise unhelpful to the caregiver. Therefore, examining usability (e.g., System Usability Scale²⁴) in addition to outcomes, would be critical in this emerging space.

Third, technologies may enable remote monitoring and intervention, particularly for safety concerns. A commonly reported source of strain among care partners is feeling stuck in the home and being unable to leave because of the need to monitor the health and safety of the person with ADRD.²⁵ In turn, care partners may experience increased social isolation, missed healthcare visits, and lack of participation in enjoyable activities. Digital technologies may provide care partners with peace of mind while not physically present in the environment of the person with ADRD. For example, there is evidence that bed sensors may limit wandering and falls at night.²⁶ Additionally, researchers have explored the use of depth cameras, which can detect persons in the home and pair with computerized algorithms to provide health alerts (e.g., falls, increased sedentary behavior) to healthcare supports.²⁷ Outcome measures for the remote monitoring pathway need to focus not just on capturing safety lapses, like falls or wandering, but also how such interventions impact caregiver perceptions of isolation, social engagement, and fears for the person with ADRD. Existing measures of loneliness (UCLA Loneliness Scale²⁸) and caregiver burden (Burden Scale for Family Caregivers²⁹) could be options to index these outcomes.

Fourth, technologies may promote access to emotional/social support. This goal is important because 59% of care partners report emotional distress from caring, and more than 70% of care partners report knowing little to nothing about available dementia services.^{4, 30} Simply having the ability to access and navigate the Internet can increase care partners’ ability to engage with resources, and increased care partner technology use is associated with increased ability to obtain support and information.³¹ Some examples include attendance at online caregiver groups, exploration of non-profit web pages (e.g., Alzheimer's Association), and reception of care from telehealth resources. Further, there are applications in development targeted specifically at addressing the emotional and information needs of care partners. For example, Brain CareNotes is a smartphone application that provides 24/7 access to psychoeducational resources, linkages to clinical experts, and evidence-based suggestions for symptom management.³² In terms of outcome measures, mood scales (e.g., Patient Heath Quesitonnaire-9³³) and caregiver knowledge scales (e.g., Dementia Care Knowledge assessment³⁴) would be relevant to this pathway. It would also be important to test whether access to these resources impacts quality of life for the person with ADRD (e.g., Quality of Life in Alzheimer's Disease scale³⁵).

Finally, technologies may assist with symptom treatment. This goal is particularly relevant to the neurobehavioral symptoms of dementia (e.g., aggression, apathy), which are important drivers of care burden.³⁶ Some hypothesized contributors to such symptoms include social isolation and boredom, such that there is interest in using digital technologies to promote pleasurable activity and interaction. The goal here is not only to increase daily enjoyment and social engagement but also to indirectly impact the behavior of persons with ADRD. For example, PARO is an animatronic social robot that moves and makes sounds. There is evidence that using this device in the living spaces of people with ADRD can reduce stress and stimulate social interactions between patients and caregivers, resulting in fewer neurobehavioral symptoms.³⁷ Measures of neurobehavioral symptoms, such as the Neuropsychiatric Inventory Questionnaire,³⁸ would be pertinent to this pathway, as would traditional measures of care burden (Burden Scale for Family Caregivers²⁹).

3 ADAPTING TECHNOLOGY-BASED STRATEGY USE BY DISEASE STAGE

Dementia is a dynamic condition, and thus the pathway by which technology may improve outcomes for persons with ADRD and their care partners will likely differ by disease stage (as will the pitfalls of technology use). In this section, we explore how digital technology use might change across the proposed six stages of the Alzheimer's continuum³⁹ as an example (see Figure 2).

FIGURE 2

Potential technology-based strategy used by Alzheimer's disease continuum stage.

First, we focus on the asymptomatic preclinical phase (i.e., stage 1). In this stage, the person with ADRD would be biomarker positive for AD but not exhibit clinical change. Care partners in the preclinical phase present as “pre-care partners” to individuals that do not yet require much, if any, assistance (but may in the future).⁴⁰ In this stage, the person with preclinical AD will have sufficient independence to engage with technologies on their own but may also do so in tandem with the care partner. Digital technology interventions might focus on warning signs and future planning for both parties, and the person with preclinical AD may also engage with technology as a way to boost reserve and reduce risk. Of note, the preclinical phase also represents an important window of opportunity for learning new technology skills and developing technology habits, which may become more difficult in later stages with worse cognitive and functional impairment.

Other potential uses of technologies at this stage might focus on symptom tracking, with the goal of early identification of transitional cognitive decline. For example, there is interest in collecting passive data through regularly used computers or smartphones.⁸ Pairing these data with artificial intelligence algorithms can help to identify subtle changes in activity patterns, social engagement, and language skills that signal a need for further evaluation.

Next, as the disease progresses through transitional cognitive decline (stage 2) and mild cognitive impairment (stage 3), the care partner may play a supportive role in helping the patient learn and implement technology-based compensatory strategies. In these stages, technology use may shift toward cognitive offloading and automated task management to maintain efficiency in daily tasks and reduce errors. A potential pitfall of technology at this point is overreliance on technology when simpler or most-effective analog strategies may be equally effective. For example, a simple written sign above the stove may increase the likelihood of turning off the appliance just as effectively as a digital reminder, and such possibilities could be evaluated empirically.

Once functional decline emerges in stage 4 (mild dementia), the patient may increasingly rely on technologies to maintain a degree of independence, with daily tasks offloaded onto devices and applications. Relatedly, care partners are likely to increasingly engage in cognitive offloading and automated time management to handle the responsibilities they have taken over for the person with AD. At this stage, a potential downside of technology is that care partners may become overwhelmed by attempts to cope by using multiple devices and applications, paradoxically increasing care burden.³¹

Finally, in the moderate and severe dementia phases (stages 5 and 6), the patient may be at increased risk for health and safety concerns (e.g., wandering, falls, poor hygiene), while simultaneously losing the ability to meaningfully engage with technologies without assistance. At this point, the care partner may be the primary implementer of technologies, with the emphasis turning more toward managing symptoms and monitoring for safety. In these stages, concerns with technology related to privacy and autonomy may be more prominent due to the increased focus on monitoring. For example, one study found that, while care partners expressed a strong desire to use surveillance technologies to monitor for wandering, people with dementia reported that such technologies infringed on their independence and felt stigmatizing.⁴¹

4 VARIABILITY IN TECHNOLOGY APPLICATION BY CLINICAL SYNDROME

In addition to adapting technology use to disease stage, care partners face the challenge of finding the right technology-based solutions for the clinical presentation of the patient. For example, for individuals with an amnestic presentation typical of Alzheimer's disease, an autobiographical memory support tool, like HippoCamera might be a good fit.⁴² This application allows users to take pictures and videos of important life events and review them to improve later recall. In contrast, for a patient with primary progressive aphasia, assistive communication technologies, such as CoChat,⁴³ are likely to be more relevant. This application helps persons with aphasia retrieve words by selecting from photos with word labels. Finally, for patients with neurodegenerative diseases that impact movement (e.g., Parkinson's disease), technologies to monitor for falls might be more critical. The TED wearable bracelet is one device designed for this purpose.⁴⁴ It will be important for researchers and developers to work with clinical experts to accurately identify the clinical syndrome and match technology-based solutions to this syndrome. Clinicians will also have important input on the most relevant outcomes for a particular clinical presentation, which is critical to clinical trial design.

5 DIGITAL DISADVANTAGE AND TECHNOLOGY USE IN ADRD CARE

While technologies hold promises for ADRD care, technology ownership and usage are not evenly distributed across the aging population. Digital disadvantage is defined by reduced ownership or use of technology by certain groups due to institutional, socioeconomic, technical, and educational barriers.⁴⁵ For example, the 2023 Pew Research survey of technology ownership among US adults indicated that access to home broadband is markedly lower among Black (68%) and Hispanic (75%) persons, as opposed to White (83%) and Asian (84%) individuals.⁴⁶ Moreover, research shows that there is an interaction between race/ethnicity and socioeconomic status on technology ownership and use. For instance, use of the Internet to obtain health information is lowest among non-white, low socioeconomic status groups.⁴⁷ We hypothesize that individuals with the greatest digital disadvantage stand the most to gain from implementing technologies in ADRD care. However, a reasonable alternative hypothesis is that the barriers faced by digitally disadvantaged groups may minimize their ability to benefit from technologies. Thus, emerging research could examine whether effect sizes of technology-based interventions on patient and care partner outcomes differ as a function of digital disadvantage.

6 THE INTERACTION BETWEEN TECHNOLOGY-BASED AND OTHER INTERVENTIONS

Technology-based care techniques may also occur in the context of other prevention and intervention programs. How will multiple forms of intervention interact? Our prediction is that incorporation of technology-based care strategies would enhance the effectiveness of existing behavioral prevention and intervention programs for persons with ADRD and their care partners. For instance, Resources for Enhancing Alzheimer's Caregiver Health (REACH) is an evidence-based program that teaches traditional behavioral techniques for symptom management and coping skills in care partners.⁴⁸ We believe such programs could be enhanced by updating modules with technology-based strategies.

A similar hypothesis could be made regarding the interaction between technology-based strategy use and potentially disease modifying drugs for Alzheimer's disease, such as lecanemab. Preliminary analyses suggested that lecanemab improves care partner quality of life and reduces care burden.⁴⁹ An open question is whether these effects might be enhanced by the addition of behavioral interventions. In particular, there is a need for studies combining anti-amyloid therapies with technology-based care strategies to optimize patient and care partner outcomes. Given that lecanemab and similar agents appear to at best modestly slow disease progression, technology-based strategies may be particularly useful for prolonging functional independence, further bending the decline curve (see Figure 3) and reducing care strain.

FIGURE 3

Hypothesized interaction effect of disease-modifying therapy and technology-based strategy use.

Of course, another possibility is that adding technology on top of other treatments leads to excessive costs and complexity.²⁰ Such additions may hurt recruitment and retention and minimize treatment impacts. In summary, testing the interactive effects of technology-based and other interventions remains an open area for empirical inquiry, which could be investigated via multi-arm randomized controlled trials.

7 ADDITIONAL CAVEATS TO TECHNOLOGY USE IN ADRD CARE

There are some additional caveats to the potential beneficial use of digital technologies in ADRD care. First, the mere presence of technologies in the environment is unlikely to cause clinical benefits if those technologies are not used regularly or are used ineffectively. This point was illustrated by the Assistive Technology and Telehealth to Maintain Independent Living at Home (ATTILA) study, a randomized controlled trial of 495 care dyads (person with ADRD and care partner).^{50, 51} This trial tested a program wherein professional assessors visited participants’ homes to make recommendations about and install assistive technologies, designed to help with independent living and safety. Unfortunately, the intervention had no impact on time to loss of independence or care partner burden, anxiety, or depression. One potential explanation of results offered by the authors was that the match between the assessors’ understanding of the technology and the needs of patients and care partners was suboptimal. Thus, there is a need to align future technology-based interventions with patient and care partner needs, moving beyond simply identifying technologies that can serve a particular purpose. Further, it will be important to include education and skill building to ensure that technologies are used in an evidence-based manner most likely to lead to beneficial outcomes.

Of course, working toward these goals requires a personalized medicine approach to technological interventions for ADRD. However, making this match can be difficult given the sheer number of technologies available. A 2022 systematic review identified 17 different categories of assistive technologies for dementia care,⁵² with potentially hundreds of available applications or devices per category. Researchers have even developed “apps to find apps” to help care partners overwhelmed by the variety of options.⁵³ We believe that capitalizing on existing technology use patterns holds the most promise in ADRD care. Our reasoning is that individuals will not benefit from technologies that they do not own or use, and older adults and care partners prefer devices and applications with which they have some familiarity and comfort.⁵⁴ Further, we direct readers to Kaser and colleagues’ proposed framework for effective integration of technologies into behavioral interventions for persons with ADRD and care partners.⁵⁵

Second, as we have noted, technology use can have drawbacks. Qualitative studies with care partners have identified financial costs, frustrating levels of complexity, and concerns about privacy and security as important disadvantages of digital technologies.⁵⁶ Financial programs are emerging to offset monetary costs of technologies. For example, the Missouri Department of Health & Senior Services provides support to individuals 60 and older to age in place, including funds for home technology and automation.⁵⁷ Moreover, products are being developed with end users in mind that directly address issues of complexity and security. Some examples include the Grandpad, a simplified, high security tablet, and the Jubilee TV, a user-friendly smart television operated via voice commands that connects to an app for care partners. There is ongoing commercial incentive for companies to create similar products and update devices and applications to be accessible to a broader number of users (i.e., customers), including older adults. Nonetheless, with each technology tested in the ADRD space, it will be important to consider cost-benefit tradeoffs and the added value of a technological solution over a comparable analog one.

Third, low- and middle-income countries may lack infrastructure for implementation of some technology-based solutions,⁵⁸ such that further investment in this area will be needed. Even in high income countries, there are questions regarding how to implement technological solutions for older adults and persons with ADRD, especially in rural and low-income neighborhoods. Potential solutions have only recently emerged. The Older Adults Technology Services (OATS) is a pilot program from the Association for the Advancement of Retired Persons that trains volunteers to teach older adults from low-income backgrounds to use iPads to increase social connectedness, improve access to information, and enhance social and civic participation.

Fourth, it is important to recognize the critical interplay between industry and academia in the development of new technologies. Tackling the health and economic challenges of aging and ADRD requires a multidisciplinary scientific approach tied to a competitive business model that achieves technology access, adoption, and maintenance at relatively low cost to consumers. Funders have recognized the importance of supporting such efforts. For example, a consortium of academic, business, and healthcare organizations in the European Union received a €21 million grant for the PREDICTOM initiative, designed to develop artificial intelligence technologies for early AD detection. In the United States, the National Institute on Aging provides support for academic-industry partnerships through its funding of the Small Business Innovation Research (SBIR) and Small Business Technology Transfer (STTR) programs, as well as more targeted funding initiatives, such as the a2Collective program. It also funds training of individuals in the aging and ADRD fields to work at the intersection of industry and academia, such as through the Research and Entrepreneurial Development Immersion (REDI) program.

Finally, technologies can present ethical concerns regarding issues of independence, privacy, and personhood, which have been considered in detail by other scholars.⁵⁹ To provide one brief example, there is growing interest in the application of socially assistive robots to the care of people with ADRD, but concern has been expressed about the ethics of replacing human connection with digital connection. To avoid ethical violations, it will be important to not only include bioethicists in the development and implementation of technologies, but also persons with ADRD, care partners, and other invested parties.

8 CONCLUSIONS AND FUTURE DIRECTIONS

With the aforementioned caveats in mind, we offer the following steps for advancing technology-focused research on ADRD care:

1. Partner with invested parties to identify a specific challenge faced by persons with ADRD or care partners that might be addressed via digital technologies.

2. Work with invested parties to assess the current technological environment and identify possible technological solutions to meet this challenge.

3. Consider potential drawbacks of technology implementation and discuss possible ethical concerns with invested parties.

4. Select the patient population most likely to benefit from the technological solution, taking into account disease stage, clinical presentation, and psychosocial factors (e.g., digital disadvantage).

5. Identify outcome measures most likely to be influenced by the technological solution, taking into account preferences of invested parties.

6. Decide whether technology-based solutions can be paired with or incorporated into other interventions.

7. Develop training tools to support technology implementation in ADRD care in coordination with invested parties.

8. Test the effects of technology-based strategies on patient and care-partner outcomes (both positive and negative consequences) and evaluate potential mechanisms of these effects.

9. Refine technology-focused interventions in partnership with invested parties and address gaps in treatment delivery.

Of course, there are many potential routes by which researchers could help to better understand the use of technologies in ADRD care. The CARES framework provides direction for scholars to evaluate how technology might influence patient and care partner centered outcomes via Cognitive offloading, Automation, Remote monitoring, Emotional/social support, and Symptom treatment. By investigating these pathways, researchers can gain a mechanistic understanding of impact of technologies on ADRD care, leading to improvements in diagnosis, disease tracking, and treatment, as well as critical care partner outcomes.

ACKNOWLEDGMENTS

This work was funded under a Career Development Award by the National Institute on Aging (NIA) of the National Institutes of Health under Award Number U54AG063546, which funds NIA Imbedded Pragmatic Alzheimer's and AD-Related Dementias Clinical Trials Collaboratory (NIA IMPACT Collaboratory). Additional support was provided by NIH AG082783.

CONFLICT OF INTEREST STATEMENT

The authors have no conflicts of interest to declare. Author disclosures are available in the supporting information.