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Abstract

This study explored digital health literacy skills, self-efficacy in utilizing digital health resources, and self-efficacy in managing personal health among caregivers of individuals with Alzheimer’s disease and related dementias (ADRD). Data from the Health Information National Trends Survey 2022 were analyzed, involving a sample of 96 family and unpaid caregivers of individuals with ADRD. Among these caregivers, almost half (49.9%) lacked confidence in using digital health resources. While over 70% used digital health tools like accessing medical information and viewing test results, fewer used health apps (57%) and wearables (48%). Sharing health infomation (21%) and connecting with others with similar health issues (33%) on social media were low, but watching health videos (72%) was popular. Telehealth (59%) and patient portal use (87% for self, 34% for care recipient) were moderate. These findings can inform the development of tailored digital health interventions to provide enhanced support for caregivers in their crucial role.

Keywords

caregivers Alzheimers disease and related dementias digital health literacy self-efficacy

What This Paper Adds

Among caregivers of individuals with ADRD, active participation in sharing personal health information on social media and interacting with others facing similar health issues on social media remains relatively low.

Using health or wellness apps on a tablet or smartphone showed the strongest link to confidence in using digital health resources.

Correlations were found between self-efficacy in using digital health resources and managing personal health.

Clinical Implications

Addressing the unmet needs of caregivers of individuals with ADRD regarding digital health literacy skills in utilizing digital health resources is crucial.

Intervention strategies aimed at promoting digital health literacy skills should prioritize essential competencies such as using health or wellness apps, navigating patient portals, and accessing test results online. These skills are critical for enhancing caregivers’ self-efficacy in utilizing digital health resources effectively.

Enhancing self-efficacy in utilizing digital health resources has the potential to improve both the personal health management of caregivers of individuals with ADRD and their caregiving capabilities.

Introduction

A significant number of Americans aged 65 and older are affected by Alzheimer’s Disease and related dementias (ADRD). An estimated 7.2 million Americans over the age of 65 have Alzheimer’s Disease, which is approximately one in every nine people aged 65 and older (The Alzheimer’s Association, 2025). In 2022, Alzheimer’s Disease was the seventh leading cause of death in the United States (The Alzheimer’s Association, 2025).

Family caregivers of individuals with ADRD who engage in long-term, intense, and stressful caregiving while managing both medical and financial matters have reported high rates of stress, depression, anxiety, and other chronic conditions (Bayly et al., 2021; Jones et al., 2017). Estimates indicate 30% of caregivers are over 65, almost two-thirds are women, with over one-third being daughters and at least 25% are part of the sandwich generation and caring for parent(s) and their own children at the same time (Oh et al., 2024; The Alzheimer’s Association, 2023). Additionally, approximately 41% of ADRD households have an annual income of less than $50,000 (The Alzheimer’s Association, 2023).

It is estimated that in 2024, over 19.2 billion caregiving hours were provided by approximately 12 million caregivers for family members with ADRD (The Alzheimer’s Association, 2025). With so much of their energy and time focused on caregiving, caregivers often neglect their own health and over time, they experience negative health outcomes such as cognitive decline (Dassel et al., 2017), increased depression potentially leading to increased risk of cardiovascular disease (B. Mausbach et al., 2007), and higher incidence of depression and anxiety (Sallim et al., 2015).

According to the American Association for Retired Persons (AARP), there are a plethora of resources available for people with ADRD, their caregivers, and their families. Services range from adult day care, in-home care, respite care, support groups, grief counseling, guides to military and VA resources, legal resources, long-term care, financial resources for current caring and end-of-life planning, and support for when caregiving ends (American Association of Retired Persons, 2024). Underserved family caregivers of individuals with ADRD, especially those from Hispanic and Asian communities, underutilize available public health services and resources (Kenning et al., 2017; Neary & Mahoney, 2005; Ta Park et al., 2019; Watari & Gatz, 2004). Crises or particularly challenging circumstances are often the driving factor in seeking support or treatment (Watari & Gatz, 2004).

Comprehensive health care resources and social services now include several digital health resources. Digital health at its most basic refers to healthcare services or information delivered or enhanced by the internet or technology such as telehealth (video or telephone), web-based platforms or information, patient portals, or m-health resources (Eysenbach, 2001; Vajravelu & Arslanian, 2021). The COVID-19 pandemic accelerated the adoption of telehealth, with up to 91% of healthcare organizations expanding their use of these services during the crisis. Moreover, 76% of these organizations reported improved patient outcomes as a result (Boswell, 2021). Patient portals, in particular, have been shown to improve chronic disease self-management, increase patient satisfaction, and foster an increased sense of independence toward chronic disease self-management (Lenihan & Smallson, 2018; Mold et al., 2015). The World Health Organization defines m-health as the use of mobile and wireless technologies to support healthcare objectives (Istepanian, 2022; Rowland et al., 2020; Ryu, 2012). This includes accessing health resources through cell phones or smartphones, using health apps (whether commercial, private, governmental, or health organization-based), and utilizing wellness devices such as wearable fitness trackers or continuous glucose monitors (Fuentes et al., 2023; Istepanian, 2022; Milne-Ives et al., 2020).

Individuals can now collect their own health data without the assistance of a healthcare provider via smartphone and tablet health apps (Fuentes et al., 2023; Milne-Ives et al., 2020; Seffah et al., 2023) and then share that information with their provider. Given the significant burden on ADRD caregivers and the health improvements demonstrated through digital health and mobile-Health (m-Health) resources described above, facilitating their use in this population could be beneficial. Encouraging this technology through a collaborative care environment, could give the caregiver the opportunity to manage both their loved one’s health and their own health with timely input from a health care provider (Donevant et al., 2018; Peyroteo et al., 2021).

The American Library Association’s task force on digital literacy defined digital literacy as follows: “Digital literacy is the ability to use information and communication technologies to find, evaluate, create, and communicate information, requiring both cognitive and technical skills” (Loewus, 2016). According to the U.S. Department of Health and Human Services as stated in Healthy People 2030, health literacy is defined as both personal health literacy and organizational health literacy (U.S. Department of Health and Human Services, & Office of Disease Prevention and Health Promotion, 2021). Personal health literacy is defined as how people are able to find information, understand it, and use it to make decisions regarding their health care and what services need to be provided (U.S. Department of Health and Human Services, & Office of Disease Prevention and Health Promotion, 2021). Digital health literacy is a combination of digital literacy and health literacy. It is the ability to navigate, search, and critically evaluate health information obtained from electronic health resources, such as apps, wearable devices, health monitoring tools, electronic health records, and other internet-based platforms and apply that information to manage health problems (Norman & Skinner, 2006). Historically, navigating these resources has been challenging. A recent meta-analysis (Jiang et al., 2024) found that older adults’ electronic health literacy—measured using an eight-item scale ranging from 8 to 32, with higher scores indicating greater perceived skills in finding, evaluating, and using electronic information for health decisions—was 21.45. Scores were lower among those without a spouse (18.9), living alone (16.03), and females (19.1). Another study (Yang et al., 2024) found that older age, lower education, lower income, and minority status were associated with reduced access to digital health technologies. Digital literacy and internet connectivity have been recognized as critical determinants of health, influencing individuals’ ability to access and utilize digital health resources effectively (Sieck et al., 2021; van Kessel et al., 2022). In summary, while digital health literacy involves a broad range of skills for using electronic health resources to enhance overall health, digital health literacy is more narrowly focused on seeking, understanding, and applying online health information for managing specific health problems. As healthcare increasingly moves toward online and mobile platforms, many vulnerable populations, such as older adults, face significant barriers, and may be left behind. (Sieck et al., 2021; Sundar, 2020).

Digital health literacy can also be impacted by the confidence one has in one’s ability to navigate electronic health resources, otherwise known as self-efficacy. Bandura defined self-efficacy as how one believes in one’s ability or capability of implementing the behavior(s) required to attain a specific goal(s; Bandura, 1997). A recent concept analysis sought to update this definition through the lens of family caregivers of people with ADRD (Khan et al., 2021). The authors’ updated definition at its most basic level would be “positive health habits, demeanor, and lack of depressive symptoms” (Khan et al., 2021, p. 122). A more complex definition includes dealing with care challenges, providing care and self-care, seeking, and obtaining help, while managing emotional stress and having a healthy relationship with the care recipient (Khan et al., 2021). According to Khan et al. (2021) self-efficacy was identified to have a direct, mediator, and moderator effect on positive health outcomes of the caregiver. The authors concluded that higher self-efficacy was instrumental in improved empowerment and increased positive gains, as well as decreased depressive symptoms, caregiver burden, and caregiver burnout (Khan et al., 2021).

Higher caregiving self-efficacy has been directly linked to decreased depressive symptoms (Cheng et al., 2013; Fortinsky et al., 2002; Khan et al., 2021; B. T. Mausbach et al., 2011; Rabinowitz et al., 2006), lower vulnerability to depression and anxiety (Khan et al., 2021; Steffen et al., 2002), and improved empowerment (Khan et al., 2021; Sakanashi & Fujita, 2017; Stockwell-Smith et al., 2018) in ADRD caregivers. In Chinese older adults, the ability to find health-related information via smartphone enhanced digital health self-efficacy (Fang et al., 2024). In American older adutls, higher electronic health literacy was associated with greater self-efficacy in coping with daily hassles and adapting to stressful life event (Park, 2025). These findings suggest that effective use of digital health resources can boost self-efficacy, which may extend to other areas of health management.

To date, there remains a notable gap in research concerning digital health literacy and self-efficacy in utilizing digital health resources among caregivers of individuals with ADRD. While previous studies across diverse populations have consistently shown that higher levels of digital health literacy and self-efficacy in using health resources are associated with improved health outcomes, these relationships have not been thoroughly explored within the context of ADRD caregiving. Thus, the aims of this exploratory study are to:

Identify the key factors (such as sociodemographic characteristics, healthcare access, health status, and digital health literacy skills) associated with self-efficacy in using digital health resources among ADRD caregivers;

Examine the direction and strength of the relationships between these key factors and self-efficacy in using digital health resources; and

Explore the relationship between self-efficacy in using digital health resources and the management of personal health among ADRD caregivers.

This exploration is especially important due to the substantial burden faced by caregivers of individuals with ADRD. The aims of this study will identify key factors that influence both the use of digital health resources and self-management of health among ADRD caregivers, ultimately guiding the development of interventions to improve their health management and caregiving outcomes.

Methods

Data

Using a national representative dataset, a secondary data analysis was conducted. The Health Information National Trends Survey (HINTS) is an annual survey of U.S. adults administered by the National Cancer Institute (NCI). Its primary aim is to monitor trends in health communication and the health information environment (National Cancer Institute, 2023). HINTS is a nationally representative cross-sectional survey that includes non-institutionalized adults aged 18 and older in the United States. This study was exempt from the requirement for Institutional Review Board (IRB) approval from the George Mason university since HINTS data are de-identified publicly available data.

This study utilized the latest version of the Health Information National Trends Survey (HINTS 6), conducted in 2022. HINTS 6 included special topics of interest, such as telehealth and patient portal use for care recipients, important variables for assessing digital health literacy. The COVID-19 pandemic spurred the widespread adoption of telehealth and digital platforms, responding to physical distancing measures and restrictions. Telehealth rapidly evolved, becoming extensively used to ensure care continuity through versatile technology, often viewed as virtual healthcare facilities (Jacqueline & Maria, 2022). Due to substantial changes in digital health utilization pre- and post-COVID-19, we decided to exclusively focus on the HINTS 6 dataset, rather than merging data from multiple years of HINTS surveys, to capture the most recent trends accurately. HINTS 6 employed a standard mail survey and online survey in English or Spanish. The sampling strategy for HINTS 6 (2022) consisted of a two-stage design: first, a stratified sample of residential addresses was selected; then, one adult was selected from each household. The total completed responses received were 6,252 with a response rate of 28.07% (National Cancer Institute, 2024).

Study Sample

Aligned with Oh et al.’s (2024) sampling approach, the study sample included respondents who identified themselves as caregivers by answering “yes” to the question, “Are you currently caring for or making health care decisions for someone with a medical, behavioral, disability, or other condition?” Those who answered “yes” provided additional details on whom they cared for. Our focus was on caregivers assisting a spouse/partner, parent(s), family member, friend, or other non-relatives, specifically those caring for individuals with Alzheimer’s, dementia, confusion, or forgetfulness. We excluded professional caregivers, such as nurses or home health aides. The final sample consisted of 96 informal caregivers of individuals with ADRD.

Measures

The dependent variable in this study was self-efficacy in utilizing digital health resources, as determined by responses to the question: “How confident are you that you can find helpful health resources on the Internet?” Responses were rated on a 5-point Likert scale ranging from 1 (completely confident) to 5 (not confident at all). These responses were then categorized into two groups: “completely confident or very confident” versus “somewhat confident, a little confident, or not confident at all,” to create a dichotomous variable.

The study collected data on age (under 60 or 60+), gender (female/male), race/ethnicity (Non-Hispanic White, Non-Hispanic Black, Hispanic, Non-Hispanic Asian, Non-Hispanic Other), education (less than high school, high school, some college, college graduate+), income (<$20,000, $20,000–$34,999, $35,000–$49,999, $50,000–$74,999, $75,000+), marital status (married/cohabitating, divorced/widowed/separated, never married), employment (employed/not employed), and relationship to care recipient (spouse/partner, parent(s), or other). For healthcare access, insurance status was categorized as either yes or no. In terms of health status, self-rated health was divided into excellent, very good, or good versus fair or poor. The sociodemographic variables, health care access, and health status variables were included as sample background characteristics (see Table 1).

Table 1.

Sample Characteristics and Self Efficacy in Using Digital Health Resources Among ADRD caregivers.

Variables	Categories	Self-efficacy in using digital health resources^a
Variables	Categories	Total 100%	Confident^b 50.1%	Not confident^c 49.9%%	p-Value^d
Sociodemographic factors
Age (years)	<60	49.0	58.4	39.4	<.001
Age (years)	≥60	51.0	41.6	60.6	<.001
Gender	Female	69.0	64.6	73.4	<.001
Gender	Male	31.0	35.4	26.6	<.001
Race and ethnicity	Non-Hispanic White	61.3	70.1	51.8	<.001
	Non-Hispanic Black or African American	12.3	4.1	21.2
	Hispanic	8.5	11.7	5.1
	Non-Hispanic Asian	11.7	11.5	11.8
	Non-Hispanic other	6.2	2.6	10.0
Education	<High school	2.1	2.2	2.0	<.001
	High school graduate or GED	23.3	20.5	26.2
	Some college	37.5	36.9	38.0
	College graduate or more	37.1	40.4	33.8
Income level	Less than $20,000	5.3	3.0	7.8	<.001
	$20,000 to less than $35,000	9.4	8.1	10.8
	$35,000 to less than $50,000	16.4	12.7	20.3
	$50,000 to less than $75,000	29.1	36.6	21.2
	$75,000 or more	39.7	39.6	39.9
Marital status	Married or living as married	83.0	83.4	82.5	<.001
Marital status	Divorced, widowed, separated, or single	17.0	16.6	17.5	<.001
Employed	Yes	47.3	56.0	38.2	<.001
Employed	No	52.7	44.0	61.8	<.001
Relationship to care recipient	Spouse or partner	27.6	28.1	27.2	<.001
	A parent or parents	43.7	40.9	46.6
	Other	28.6	31.0	26.2
Health care access
Insurance	Yes	98.0	100	95.9	<.001
Insurance	No	2.0	0	4.1	<.001
Health status
Self-rated health	Excellent, very good, or good	79.8	78.5	81.2	<.001
Self-rated health	Fair or poor	20.2	21.5	18.8	<.001

Note. Row percentages for confident and not confident represent within-group percentages.

Self-efficacy with Digital Health Resources was assessed using a 5-point Likert scale question: “How confident are you that you can find helpful health resources on the Internet?”.

Completely confident or very confident.

Somewhat confident, a little confident, or not confident at all.

Chi-square tests were used.

Digital health literacy characteristics included internet navigation for health purposes, use of digital communication tools, use of digital health tools and apps, use of social media for health purposes, use of telehealth, and use of patient portals (Refer to the details outlined in Table 2). Previous research has used these measures to evaluate digital health literacy (Lai et al., 2024; Lee et al., 2024; Shaw et al., 2024). For internet navigation, respondents were queried about their activities in the past 12 months, including searching for health or medication information and viewing medical test results online (yes or no). The use of digital communication tools was assessed by querying respondents about their use of the internet in the past 12 months for sending messages to a healthcare provider or a healthcare provider’s office, as well as for making appointments with a healthcare provider (yes or no). Digital health tools and apps usage was assessed through three questions inquiring if respondents had, in the past 12 months: used a health or wellness app on their tablet or smartphone, utilized an electronic wearable device for health or activity tracking (e.g., Fitbit, Apple Watch, or Garmin Vivofit), and shared health information from either an electronic monitoring device or smartphone with a health professional (yes vs. no). Social media use was assessed with five questions asking if respondents had, in the past 12 months, visited a social media site, shared personal or general health-related information, interacted with others on social media or online forums about health issues, or watched a health-related video on platforms like YouTube. Regarding the Use of Telehealth, respondents were asked if they had received care from a doctor or health professional using telehealth in the past 12 months (yes vs. no), and subsequently, among telehealth recipients, whether they received care by video, by phone call, or by both video and phone call. For the Use of the Patient Portal, respondents were questioned if they had utilized the patient portal for their health and the health of their care recipients at least once in the last 12 months (yes vs. no). Subsequently, among users for their health, they were specifically asked if they had used their patient portal to download their health information to their computer or mobile device, such as a cell phone or tablet, to electronically send their medical information to a third party (such as another healthcare provider, a family member, or a smartphone health app), to view clinical notes (i.e., a healthcare provider’s written notes that describe their visit), and to look up test results (yes vs. no).

Table 2.

Associations Between Digital Health Literacy Skills and Self-efficacy with E Health Resources Among ADRD Caregivers.

Variables	Self-efficacy in using digital health resources^a
Variables	Total 100%	Confident^b 50.1%	Not confident^c 49.9%%	p-Value^d
Internet navigation: In the past 12 months, you used the Internet to
Look for health or medical information	94.1	90.1	98.7	<.001
View medical test results	73.8	81.9	64.3	<.001
Use of Digital Communication Tools: In the past 12 months, you used the Internet to
Send a message to a health care provider/health care provider’s office	76.8	80.3	72.6	<.001
Make an appointment with a health care provider	70.2	71.8	68.3	<.001
Use of Digital Health Tools and Apps: In the past 12 months, you used
A health or wellness app on your tablet or smartphone	56.5	70.1	42.8	<.001
An electronic wearable device to monitor or track health or activity (e.g., a Fitbit, AppleWatch or Garmin Vivofit. . .)	47.6	61.4	33.6	<.001
Shared health information from either an electronic monitoring device or smartphone with a health professional	22.5	18.9	26.2	<.001
Use of Social Media: In the last 12 months, you have ever
Visited a social media site?	90.5	91.2	89.6	<.001
Shared personal health information on social media?	20.8	21.2	20.3	<.001
Shared general health-related information on social media (for example, a news article)?	33.2	35.7	30.7	<.001
Interacted with people who have similar health or medical issues on social media or online forums	33.2	35.7	30.7	<.001
Watch a health-related video on a social media site (for example, YouTube)	72.3	82.9	61.1	<.001
Use of telehealth: In the past 12 months, you
Received care from a doctor or health professional using telehealth	58.8	51.6	66.4	<.001
Among telehealth recipients
By Video	43.4	66.3	24.5	<.001
By Phone call	26.6	24.9	27.9
By both Video and phone call	30.1	8.8	47.5
Use of patient portal: In the last 12 months, you used your patient portal
At least once for your health	87	80.9	79.3	<.001
At least once for your care recipient	34.2	31.6	37.1	<.001
To download your health information to your computer or mobile device, such as a cell phone or tablet	41.6	34.7	50	<.001
To electronically send your medical information to a third party (such as another health care provider, a family member, or a smartphone health app)?	22	26.7	16.3	<.001
To view clinical notes (a health care provider’s written notes that describe your visit)	81.7	78,8	85.2	<.001
To look up test results	80.1	75.7	85.5	<.001

Note. Row percentages for confident and not confident represent within-group percentages.

Self-efficacy with Digital Health Resources was assessed using a 5-point Likert scale question: “How confident are you that you can find helpful health resources on the Internet?”.

Completely confident or very confident.

Somewhwat confident, a little confident, or not confident at all.

Chi-square tests were used.

In addition, self-efficacy in managing personal health was assessed with the question: “Overall, how confident are you about your ability to take good care of your health?” Responses were rated on a 5-point Likert scale ranging from 1 (completely confident) to 5 (not confident at all).

Single-item measures for self-efficacy in digital health use (Elkefi & Matthews, 2024; Kalinowski et al., 2024; Lai et al., 2024) and personal health management (Elkefi & Matthews, 2024; Langford et al., 2023; Mahmood et al., 2024) have been validated in prior research to minimize response burden.

Data Analyses

Statistical analyses were conducted using SPSS (version 28 for Windows), applying sample weights and 50 jackknife replicate weights to generate weighted estimates and design-adjusted standard errors.The final replicate weights were products of the replicate weights, nonresponse adjustments, and calibration adjustments (National Cancer Institute, 2024). Descriptive statistical analysis was conducted to describe sample characteristics, digital health literacy skills, self-efficacy in utilizing digital health resources, and self-efficacy in managing personal health. Chi-square tests were then used to examine the relationship between sample characteristics, digital health literacy skills, and self-efficacy in using digital health resources. Pearson’s r was used to examine the association between self-efficacy in using digital health resources and self-efficacy in managing personal health, both measured on a 5-point Likert scale ranging from 1 (completely confident) to 5 (not confident at all). In addition, a multivariate logistic regression model was run to identify background characteristics as determinants of self-efficacy in using digital health resources among informal caregivers of people with ADRD. We examined the logistic regression assumptions, with all independent variables being categorical. Although VIF does not directly assess categorical variables, it was applied to dummy-coded versions to check for multicollinearity, and no issues were observed. The results are presented in the form of adjusted odds ratios (aOR) and 95% confidence intervals (CI). An aOR where the 95% CI excluded one was considered statistically significant. Furthermore, after accounting for background characteristics, the aOR of each digital health literacy skill for self-efficacy in utilizing digital health resources was analyzed using multiple logistic regression analyses. This aimed to evaluate the relative strengths of the relationships between different digital health literacy skills and self-efficacy in digital health literacy by comparing aORs. Lastly, correlations were used to examine the relationship between self-efficacy in using digital health resources and self-efficacy in managing personal health. Statistical significance was defined by p < .05 in all analyses.

Results

Characteristics of Caregivers for Individuals with ADRD

As shown in Table 1, 51% of the samples of caregivers with individuals with ADRD were age older than 60 years. The respondents had a mean age of 56.7 years, a median age of 62 years, and an age range of 10 to 90 years. Most were female (69.0%), non-Hispanic white (61.3%), married (83.0%), and had health insurance (98%). Black or African American individuals comprised 12.3%, Asians 11.7%, and Hispanics 8.5% of the sample. About 98% had at least a high school diploma, and 39.7% reported incomes of $75,000 or more. Additionally, 52% worked full-time, with 43.7% caring for parents and 27.6% caring for spouses or partners. Moreover, 79.8% rated their health as excellent, very good, or good.

Digital Health Literacy Skills and Self-Efficacy in Using Digital Health Resources Among ADRD Caregivers

In the past 12 months, the majority of ADRD caregivers utilized the Internet for various health-related purposes. A significant percentage (94.1%) searched for medical information online, while 73.8% accessed medical test results. Additionally, over 70% of caregivers used the Internet to communicate with healthcare providers (76.8%) and schedule appointments online (70.2%). When it comes to digital health tools and apps, approximately half of ADRD caregivers reported using health or wellness apps on a smartphone or tablet (56.5%) and electronic wearable devices for health monitoring (47.6%). However, only 22.5% shared health information from these devices with healthcare professionals, indicating a lack of communication regarding self-care monitoring data.

A majority (90.5%) of ADRD caregivers visited social media sites, with 72.3% of those individuals watching health-related videos, such as those on YouTube. However, engagement in health-related activities on social media platforms was minimal, with only 20.8% sharing personal health information and one-third (33.2%) interacting with others who have similar health issues on social media or online forums.

Regarding telehealth utilization, 58.8% of caregivers received care from a healthcare professional via telehealth, but only 43.4% utilized video-based telehealth services. In terms of patient portals, 87% of ADRD caregivers used their patient portal for health-related activities, while only 34.2% accessed the patient portal for their care recipient. Specific activities within patient portals varied, with 81.7% viewing clinical notes, 41.6% downloading health information to electronic devices, and 22% electronically sending medical information to third parties.

Approximately half (50.1%) of ADRD caregivers expressed confidence in their self-efficacy in using digital health resources.

Associations Between ADRD Caregivers’ Characteristics, Digital Health Literacy, and Self-Efficacy in Utilizing Digital Health Resources and Managing Personal Health Among ADRD Caregivers

Bivariate analyses indicated statistically significant relationships between all sample characteristic variables and self-efficacy in utilizing digital health resources and digital health literacy skills, as shown in Tables 1 and 2.

Associations Between ADRD Caregivers’ Characteristics and Self-Efficacy in Utilizing Digital Health Resources

In the regression analysis (Table 3), older caregivers (aOR = 0.46; 95% CI: [0.459, 0.466]) and female caregivers (aOR = 0.63; 95% CI: [0.627, 0.635]) of individuals with ADRD exhibited lower self-efficacy in using digital health resources compared to their younger and male counterparts, respectively. Black or African American (aOR = 0.15; 95% CI: [0.145, 0.147]) and Asian (aOR = 0.77; 95% CI: [0.760, 0.774]) ADRD caregivers were less likely to be confident in their self-efficacy, but Hispanic caregivers (aOR = 1.84, 95% CI: [1.823, 1.861]) were more likely to be confident in using digital health resources compared to non-Hispanic White caregivers. A higher level of education (some college or college graduate or more) was associated with increased confidence in self-efficacy in using digital health resources among ADRD caregivers compared to those with less than a high school or high school graduate education. ADRD caregivers with higher income levels were more likely to be confident in their self-efficacy in using digital health resources. Those who were not married, including those who were divorced, widowed, separated, or single, were less likely to be confident in their self-efficacy in using digital health resources. Caregivers providing care for their parents (aOR = 0.39; 95% CI: [0.382, 0.388]) were less likely to express confidence in their self-efficacy in using digital health resources compared to those caring for spouses or partners, even though the latter group may be older. Additionally, caregivers who rated their own health as fair or poor (aOR = 0.96; 95% CI: [0.950, 0.964]) were less likely to feel confident in their self-efficacy in utilizing digital health resources compared to those who rated their health as excellent, very good, or good.

Table 3.

Multivariate Logistic Regression Model for Self-efficacy in Using Digital Health Resources Among ADRD Caregivers.

Variables	Self-efficacy in using digital health resources (confident)^a
Variables	aOR [95% CI]
Sociodemographics
Age (Ref: <60)
60+	0.46 [0.459, 0.466]
Gender (Ref: Male)
Female	0.63 [0.627, 0.635]
Race and Ethnicity (Ref: Non-Hispanic White)
Non-Hispanic Black or African American	0.15 [0.145, 0.147]
Hispanic	1.84 [1.823, 1.861]
Non-Hispanic Asian	0.77 [0.760, 0.774]
Non-Hispanic other	0.10 [0.094, 0.096]
Education (Ref: <High school, High school graduate or GED)
Some college	1.20 [1.187, 1.203]
College graduate or more	1.53 [1.518, 1.541]
Income (Ref: <$20,000)
$20,000 to <$35,000	2.48 [2.442, 2.512]
$35,000 to <$50,000	2.25 [2.215, 2.277]
$50,000 to <$75,000	5.25 [5.177, 5.314]
$75,000 or more	3.12 [3.080, 3.166]
Marital status (Ref: married or living as married)
Divorced, widowed, separated, or single	0.70 [0.692, 0.702]
Employment (Ref: not employed)
Employed	1.94 [1.926-1.951]
Relationship to care recipient (ref: spouse or partner)
A parent or parents	0.39 [0.382, 0.388]
Other	0.85 [0.845, 0.858]
Self-rated health (Ref: excellent, very good, or good)
Fair or poor	0.96 [0.950, 0.964]

Note. All results are statistically significant at p < .001. Insurance status was not included in the model due to its low variance. Model chi-square = 860,391.9, df = 17, p < .001; Nagelkerke R².

Completely confident or very confident.

Associations Between Digital Health Literacy Skills and Self-Efficacy in Utilizing Digital Health Resources

After adjusting for age, gender, race/ethnicity, education, marital status, relationship to the care recipient, and self-reported health, logistic regression analyses were conducted to examine the associations between each digital health literacy skill and self-efficacy in utilizing digital health resources (see Table 4). All skills were found to be significantly associated with self-efficacy in using digital health resources. Specifically, the use of digital health tools/apps, engagement with social media (including visiting, sharing health-related information, interacting with others who have similar health issues, and watching health-related videos), and utilizing patient portals for personal health management (including downloading health information and electronically sending medical information to third parties) were associated with increased odds of confidence in self-efficacy in using digital health resources. Conversely, activities such as seeking health information online, using digital communication tools to share personal health information on social media, receiving telehealth services, using patient portals for care recipient information, and accessing test results through patient portals were associated with decreased odds of confidence in self-efficacy.

Table 4.

Associations Between Digital Health Literacy Skills and Self-efficacy in Using Digital Health Resources Among ADRD Caregivers.

Digital health literacy skills	Self-efficacy in using digital health resources (confident)^a
Digital health literacy skills	aOR^b [95% CI]
Internet navigation: In the past 12 months, you used the Internet to (Ref: No)
Look for health or medical information	0.12 [0.116, 0.123]
View medical test results	5.64 [5.591, 5.693]
Use of Digital Communication Tools: In the past 12 months, you used the Internet to
Send a message to a health care provider/health care provider’s office	0.87 [0.863, 0.878]
Make an appointment with a health care Provider	0.47 [0.463, 0.471]
Use of Digital Health Tools and Apps: In the past 12 months, you used
Health or wellness app on your tablet or smartphone	111.13 [109.452, 112.828]
An electronic wearable device to monitor or track health or activity (e.g., a Fitbit, AppleWatch or Garmin Vivofit. . .)	2.58 [2.566, 2.600]
Shared health information from either an electronic monitoring device or smartphone with a health professional	1.05 [1.044, 1.057]
Use of Social Media: In the last 12 months, you have ever
Visited a social media site	1.05 [0.993, 1.062]
Shared personal health information on social media	0.23 [0.223, 0.227]
Shared general health-related information on social media (for example, a news article)	2.97 [2.951, 2.990]
Interacted with people who have similar health or medical issues on social media or online forums)	2.10 [2.088, 2.115]
Watch a health-related video on a social media site (for example, YouTube)	3.12 [2.096, 3.137]
Use of telehealth: In the past 12 months, you
Received care from a doctor or health professional using telehealth	0.46 [0.454, 0.461]
Use of patient portal: In the last 12 months, you used your patient portal
At least once for your health	15.77 [15.578, 15.972]
At least once for your care recipient	0.14 [0.134, 0.136]
To download your health information to your computer or mobile device, such as a cell phone or tablet)	1.39 [1.376, 1.402]
To electronically send your medical information to a third party (such as another health care provider, a family member, or a smartphone health app)?	3.08 [3.036, 3.118]
To view clinical notes (a health care provider’s written notes that describe your visit)	0.13 [0.130, 0.133]
To look up test results	0.08 [0.081, 0.084]

Note. All results are statistically significant at p < .001.

Completely confident or very confident.

Age, gender, race/ethnicity, education, marital status, relationship to care recipient, and self-reported health were adjusted.

Among these factors, the use of health or wellness apps on a tablet or smartphone (aOR = 111.13, 95% CI: [109.452, 112.828]) exhibited the largest effect size, indicating the strongest association with confidence in self-efficacy for utilizing digital health resources. Following this, utilizing patient portals for personal health management (aOR = 15.77; 95% CI: [15.578, 15.972]) showed the next highest effect size, followed by navigating the Internet to view medical test results online (aOR = 5.64; 95% CI: [5.591, 5.693]), watching health-related videos on social media platforms (e.g., YouTube, aOR = 3.12; 95% CI: [2.096, 3.137]), and electronically sending medical information to third parties via patient portals (aOR = 3.08, 95% CI: [3.036, 3.118]).

Association Between Self-Efficacy in Using E-Health Resources and Self-Efficacy in Managing Personal Health

Of the respondents, 60.8% reported being completely confident or very confident in managing their health, while 39.2% indicated they were somewhat confident or a little confident. A significant but small association was observed between self-efficacy in utilizing digital health resources and managing personal health among ADRD caregivers (r = .166, p < .001).

Discussion

The overall goal of this study was to explore digital health literacy skills, self-efficacy in utilizing digital health resources, and self-efficacy in managing personal health among caregivers of individuals with ADRD. Almost half of the caregivers expressed low confidence in using digital health resources, highlighting a significant gap in digital health literacy within this population. Our findings suggest that caregivers’ active participation in sharing personal health information and engaging with others on social media remains relatively low. However, using health or wellness apps on tablets or smartphones showed the strongest link to self-efficacy in utilizing digital health resources. Racial and ethnic disparities in self-efficacy were evident. Additionally, we found correlations between self-efficacy in using digital health resources and managing personal health.

Utilization of Digital Health Resources

The COVID-19 pandemic accelerated the digital transformation of many services, including healthcare. Equitable access to health information and improved health communication is a key focus of the US Department of Health and Human Services’ Healthy People 2030 Initiative, which aims to enhance overall health and well-being (U.S. Department of Health and Human Services, & Office of Disease Prevention and Health Promotion, 2021). The growing use of digital health tools—such as mobile health, wearable devices, telehealth, and telemedicine—supports effective communication, which is essential for health decision-making and patient-centered care (US Food and Drug Administration, 2020). Although substantial research exists on digital health use in the general population, there is limited information specifically addressing caregivers of individuals with ADRD. Given the growing reliance on digital tools, understanding their use among caregivers will be critical to providing effective support.

Our findings explored the usage of digital health resources among caregivers of indviduals with ADRD. A majority (94%) of ADRD caregivers used the internet to seek health or medical information, with 74% accessing medical results. Many also used electronic devices to communicate with healthcare providers (77%) and schedule appointments (71%). Notably, telehealth usage among ADRD caregivers in our study was 58.5% (43.4% via video, 26.6% by phone, and 30.1% via both), which is higher than the 39.3% observed in the general US population (Chandrasekaran, 2024). However, our findings are limited in clarity regarding whether this telehealth usage is primarily for the caregivers’ own health-related needs or for those of their care recipients. Despite high engagement with health information—such as accessing medical results, communicating with healthcare providers, and scheduling appointments via patient portals—only 22.5% of ADRD caregivers shared health information from electronic devices (e.g., Fibits, blood pressure monitors, glucose meters etc.) or smartphone with their healthcare providers. This low rate suggests potential barriers to sharing digital health information that require further investigation. Identifying and addressing these barriers is essential for fully leveraging digital health tools and enhancing care coordination.

Self-Efficacy Gap in Digital Health Resource Utilization

Individual digital health literacy skills were notably linked to differing levels of self-efficacy in the utilization of digital resources. For instance, despite high engagement in online health information seeking—evidenced by the fact that 94.1% of participants reported searching for health or medical information on the internet—this behavior does not translate into increased self-efficacy in utilizing these digital tools effectively. This discrepancy suggests that simply accessing information online does not necessarily equip individuals with the skills or confidence to use digital health resources.

One notable observation is that activities typically associated with digital health engagement—such as using digital communication tools to message healthcare providers, scheduling appointments, sharing personal health information on social media, utilizing telehealth services, and accessing clinical notes or test results through patient portals—were linked to decreased self-efficacy. This raises important questions about the nature of these digital interactions. While the intention behind using these tools is often to enhance communication and engagement with healthcare and/or other supportive environments, the actual experience may not empower users as intended.

Social media usage for various purposes among ADRD caregivers highlights the complexity of self-efficacy in using digital resources. The majority (90.5%) of ADRD caregivers visited social media, with 72.3% watching health-related videos. However, only 20.8% shared health information, and 33.2% interacted with others facing similar issues. Research suggests social media can benefit health- and lifestyle-related activities (Le et al., 2023). Sharing personal health information on social media may foster socialization and support personal health improvement (Lin et al., 2018), but concerns about privacy (Le et al., 2023) remain a significant barrier. Younger individuals are more willing to share information online (Newman et al., 2021), while older adults often view social media as trivial or lack the skills to engage (Jung et al., 2017; Oh et al., 2024; Wilson et al., 2023). Given that 51% of our sample is aged 60 and older, privacy concerns about sharing personal health information on social media and limited technology skills may contribute to the observed low levels of engagement and self-efficacy in using digital health resources. These factors warrant further investigation.

Similarly, challenges in using patient portals, combined with privacy concerns and technical issues, (Oh et al., 2024; Trivedi et al., 2021), likely contribute to diminished confidence. The patient portals are designed to improve healthcare delivery by facilitating better communication between providers and patients access to health records, lab results, medication refills, educational materials, secure messaging, appointment scheduling, and telehealth visits (Johnson et al., 2023). This functionality allows caregivers to take a more active role in managing both their own health and the care of those they support. Therefore, our finding that caregivers who use patient portals to access care recipient information, test results, and clinical notes show decreased self-efficacy in using digital resources warrants further investigation.

Caregiver self-efficacy in utilization of patient portals is of particular interest, due to the numerous benefits they provide, such as; improved provider communication (Ramirez-Zohfeld et al., 2020), enhanced medication adherence (Dendere et al., 2019), increased patient empowerment in care (Assadi & Hassanein, 2017), and safety and quality of care (Neves et al., 2020). However, the findings from this study suggest that despite the clear benefits of patient portals, caregivers may struggle with self-efficacy in using these resources effectively.

The notable increase in caregiver use of patient portals—from 53.4% in previous HINTS data (2018–2020; Oh et al., 2024) to 87% for ADRD caregivers themselves and 34% for care recipients in the 2022 HINTS data—is encouraging. This increase may reflect the growing recognition of the importance of digital tools in managing health information and improving care coordination. However, it also suggests a need to enhance caregivers’ confidence and skills in using patient portals. Without this support, caregivers may not be able to fully utilize the benefits these tools offer, potentially limiting their effectiveness in managing care.

Leveraging Digital Health Literacy Skills to Enhance Caregiver Self-Efficacy and Address Support Needs

To improve self-efficacy among caregivers of individuals with ADRD, it is important to meet caregivers where they are. This entails encouraging self-efficacy in the digital platforms that caregivers use most frequently and sharing information via platforms caregivers most commonly use. For example, among caregivers of individuals with ADRD, 72.3% of those individuals watch health-related videos on sites, such as YouTube. YouTube is a widespread phenomenon because of the myriad of health-related videos and the ease of searching and finding relevant information based on individual needs. While there are health-related videos on YouTube that are considered educationally informative and are of high quality (Brar et al., 2021; Kumar et al., 2014; Lim et al., 2018; Wong et al., 2017), some studies indicated health-related videos on YouTube are often poor quality, misleading, or have commercial content designed to sell products or services (Albarracin et al., 2018; Loeb et al., 2019). Additionally, caregivers often have unmet needs of social support and engagement (McCabe et al., 2016; Waligora et al., 2019). Healthcare professionals can address these issues by creating and delivering high-quality educational and support videos specifically tailored for caregivers on YouTube. By leveraging this platform, professionals can provide valuable resources that meet caregivers’ needs for reliable information and community support.

Enhancing caregivers’ self-efficacy with digital health resources requires targeted education and support. Our findings show that the use of health and wellness apps is strongly linked to higher self-efficacy. This may be because wellness apps are typically more user-friendly and widely adopted, helping caregivers build confidence in using digital tools. As caregivers become more comfortable with these apps, they may be more likely to engage with other resources, particularly if those tools are similarly user-friendly and highly accessible via smartphones or mobile device (Wang et al., 2022).

For health professionals, it is crucial to assess caregivers’ baseline self-efficacy before making recommendations. Tailoring recommendations to align with caregivers’ current level of self-efficacy ensures that interventions are both effective and supportive. Furthermore, the user-friendly nature of apps—often due to their focused and streamlined design—may facilitate their increased adoption among caregivers. However, it is important to note that the frequency of use of digital tools does not necessarily correlate with higher self-efficacy. For example, despite 94.1% of participants engaging in the usual online search practice for health or medical information, this did not significantly enhance their self-efficacy. This highlights the need for targeted education on digital health tools to effectively enhance caregivers’ self-efficacy. Addressing the specific needs of the target population further supports this approach.

Addressing Diversity in Self-Digital Literacy

Factors such as age, education, race/ethnicity, maritial status, financial levels, and more appear to be contributing to varying levels of self-efficacy in using digital health resources. Younger, educated, male, married, and higher-income caregivers exhibited higher self-efficacy in digital health resource utilization. Racial and ethnic disparities were evident, with black or African American (45.2%) and Asian ADRD caregivers (40.7%) showing lower confidence compared to non-hispanic White caregivers (60.8%). This pattern of disparities is also observed in EMR data from chronic disease clinics within federally qualified health centers (Adepoju et al., 2022). Our findings show that Hispanic caregivers have higher confidence in using digital health resources (53.6%) compared to Black or African American and Asian caregivers. This contrasts with existing literature suggesting Hispanics generally experience a greater digital divide, with lower usage of digital health tools compared to Whites and Blacks (Adepoju et al., 2022; Millar et al., 2020). For example, Hispanics were found to be 51% less likely to use telehealth compared to non-Hispanics (Adepoju et al., 2022). The higher confidence among Hispanic ADRD caregivers may be due to their generally younger age compared to other racial and ethnic groups (National Alliance for Caregiving, 2020), indicating that age might moderate the relationship between race/ethnicity and self-efficacy. This younger demographic among Hispanic caregivers likely has greater exposure to technology and social media, contributing to their increased comfort and proficiency in using digital health resources.

Self-efficacy in using digital health resources was lower among ADRD caregivers caring for a parent compared to those caring for a spouse. Adult-child caregivers, while spending less time on caregiving, often face a greater burden than spousal caregivers (Reed et al., 2014). This lower self-efficacy in digital health resources, combined with limited caregiving experience and a higher burden, may negatively impact their ability to manage both caregiving responsibilities and their own health. Further research is needed to better understand these dynamics.

Limitations and Recommendations

This study uses a national database to evaluate caregivers of individuals with ADRD across a diverse U.S. population, a typically hard-to-reach group. Given the limited research on their healthcare needs, the findings are valuable. However, several limitations should be noted. The digital health literacy assessment—including internet navigation, use of digital tools, health apps, social media, telehealth, and patient portals—does not differentiate between digital health resources used for personal health management versus caregiving. While we examine the relationship between digital health literacy, measured by the use of digital health resources, and self-efficacy in using these resources, the findings offer valuable insights but do not fully address the specific benefits and challenges caregivers face. Our assessment only considered whether participants ever used digital health resources, without exploring usage frequency, intensity, or purpose. Additionally, the study does not clarify how self-efficacy in managing peronal health and digital health resource use impact health outcomes for caregivers or recipients. The cross-sectional design limits the ability to establish causal relationships. Future research should explore how improving digital health literacy impacts health behaviors and outcomes and develop strategies to better support ADRD caregivers in using digital health resources for both themselves and their care recipients. Moreover, as a limitation of using secondary data from HINTS, we acknowledge the lack of additional care recipient and caregiver characteristics as potential confounding variables—such as caregiving intensity, care recipient’s age, and health conditions—that may significantly influence digital health literacy and self-efficacy in using digital health resources. Our sample inclusion criteria relied on caregiver reports of Alzheimer’s disease, dementia, confusion, or forgetfulness. Because confusion or forgetfulness can result from conditions other than ADRD such as traumatic brain injury, intellectual disability, classifying all such caregivers as caring for individuals with ADRD may overgeneralize and introduce misclassification bias. Lastly, using weighted data for small subgroups can produce unstable estimates and reduced precision. Despite these challenges, the sample characteristics in this study align with caregiver profiles reported in the 2024 Alzheimer’s Association report (The Alzheimer’s Association, 2023), supporting the generalizability of the findings. Nonetheless, these limitations should be acknowledged, and the results interpreted with caution. Future research with larger samples could improve estimate stability.

Conclusions

This study fills a critical gap by investigating digital health literacy and self-efficacy in using digital health resources among caregivers of individuals with ADRD. Analyzing HINTS 6 data from 2022 alongside previous findings, we observed widespread and increasing trends in digital health use among ADRD caregivers, including accessing medical information, viewing test results, using health apps and wearable devices, and engaging in telehealth and patient portal use. However, active participation in sharing health information on social media and utilizing patient portals remains relatively low. Demographic disparities were notable, with younger, educated, male, married, and higher-income caregivers exhibiting higher self-efficacy in digital health resource utilization. Racial and ethnic differences also surfaced, with Black or African American and Asian caregivers showing lower confidence compared to non-Hispanic White caregivers.

Our findings suggest that the use of health and wellness apps is associated with higher self-efficacy, highlighting the potential benefit of targeted education and support to help caregivers build confidence, particularly with user-friendly and accessible tools like health apps. Enhancing caregivers’ proficiency with digital health resources may have the potential to improve outcomes for both caregivers and care recipients. Increased digital health literacy could support caregivers in managing medical information, communicating more effectively with healthcare providers, and coordinating appointments with greater ease. Preparing caregivers with the necessary skills to use digital tools effectively could enhance care coordination and decision-making, leading to improved outcomes for both caregivers and individuals with ADRD.

Footnotes

ORCID iDs

Kyeung Mi Oh

Krista Beran

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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Digital Health Literacy and Self-Efficacy in Using Digital Health Resources Among Caregivers of Individuals with Alzheimer’s Disease and Related Dementias

Abstract

Keywords

What This Paper Adds

Clinical Implications

Introduction

Methods

Data

Study Sample

Measures

Data Analyses

Results

Characteristics of Caregivers for Individuals with ADRD

Digital Health Literacy Skills and Self-Efficacy in Using Digital Health Resources Among ADRD Caregivers

Associations Between ADRD Caregivers’ Characteristics, Digital Health Literacy, and Self-Efficacy in Utilizing Digital Health Resources and Managing Personal Health Among ADRD Caregivers

Associations Between ADRD Caregivers’ Characteristics and Self-Efficacy in Utilizing Digital Health Resources

Associations Between Digital Health Literacy Skills and Self-Efficacy in Utilizing Digital Health Resources

Association Between Self-Efficacy in Using E-Health Resources and Self-Efficacy in Managing Personal Health

Discussion

Utilization of Digital Health Resources

Self-Efficacy Gap in Digital Health Resource Utilization

Leveraging Digital Health Literacy Skills to Enhance Caregiver Self-Efficacy and Address Support Needs

Addressing Diversity in Self-Digital Literacy

Limitations and Recommendations

Conclusions

Footnotes

ORCID iDs

Funding

Declaration of Conflicting Interests

References