A cross-sectional survey of carers of people with dementia was conducted.

Eligible carers were aged 18 years and older, self-identified as able to read and write English, and were the primary source of informal practical and emotional support to a person living in the community who had received a confirmed diagnosis of dementia from a medical professional.

Participants were recruited as part of a larger study examining dementia carer needs [5]. Potentially eligible carers were identified through multiple settings in 2 states of Australia (New South Wales and Victoria) including 10 private geriatrician clinics, 3 community-based respite centers for people with dementia, 6 carer support groups, 34 community-based social groups for older people, and an aged care provider. Staff members within these settings reviewed records and provided potential participants with a study information pack including a cover letter, information statement, hard copy of the survey, and reply-paid envelope for the return of the survey directly to the research team. Alternatively, the study was advertised within the setting, and interested carers completed a study eligibility form, which was returned to the research team to mail out the study information pack. The survey could be completed by pen and paper or online if preferred. A reminder including a second copy of the survey was sent after 4 weeks to nonresponders. Data were collected between July 2018 and June 2020.

Participants self-reported their sex, age, postcode, highest level of education, private health insurance status, concession card status, presence of health conditions, and relationship to the person with dementia and completed a measure of depression severity (Patient Health Questionnaire-9 [PHQ-9]) [35]. Participants were asked whether they have access to the internet (Yes or No), how confident they are in using the internet (Very confident or Somewhat confident or not at all confident), and whether the person they support would be able to use the internet if they wanted to (Yes on their own or Yes with help or No).

Analyses were conducted in R version 4.3.1 (2023-06-16 ucrt; R Foundation for Statistical Computing). Descriptive statistics are reported as counts and proportions for categorical variables and mean and SD for continuous variables. Postcode was used to calculate an Accessibility/Remoteness Index of Australia Plus (ARIA+) score indicating whether people live in a major city or regionally [36]. Postcode was also used to estimate the degree of socioeconomic disadvantage using the Socio-Economic Index for Areas (SEIFA) Index of Advantage and Disadvantage (2016) [37].

Factors related to internet access were first modeled individually and then all the factors were included in a multivariable logistic regression model. These factors included age, depression score (PHQ-9), sex, ARIA+ score, SEIFA decile, highest level of education, relationship to person with dementia, living arrangements, private health insurance status, and the presence of health conditions.

The study was approved by the Human Research Ethics Committees of Hunter New England Health (17/05/17/4.07) and the University of Newcastle (H-2018‐0308). Participation in the study was voluntary. Completion and return of the survey was taken as implied consent to participate. All personal information was stored separately from responses collected in the survey and only deidentified data were analyzed. Participants were not compensated for their participation in the study.

A total of 172 carers completed the survey (consent rate 47%). Participant characteristics are shown in Table 1. Most participants were female (124/172, 74%) lived in a major city (118/140, 84%) and had an average age of 71.8 (SD 10.91) years. The mean PHQ-9 score was 5.50 (SD 5.37), which is classified as mild depression.

Most carers (126/155, 81%) indicated they had access to the internet. Overall, 34% (52/153) of carers reported being very confident, and 35% (52/153) reported being somewhat confident using the internet. The majority of people with dementia (114/166, 83%) were reported as not able to use the internet. A further 9.6% (16/166) of people with dementia were reported as being able to use the internet with help, and only 7.8% (13/166) were reported as able to use the internet independently.

As shown in Table 2, after adjusting for other factors, age, sex, and private health insurance status were significantly associated with internet access among carers of people with dementia. For every 1-year increase in age, there was a 13% reduction in the odds of a carer having internet access (odds ratio [OR] 0.87, 95% CI 0.80‐0.96; P=.003). Male carers were 4 times more likely to have internet access than females (OR 4.32, 95% CI 1.00‐18.6; P=.05). Similarly, carers with private health insurance were 8 times more likely to have internet access compared to those who did not (OR 8.45; 95% CI 2.74‐26; P<.001).

We found that most (126/172, 81%) carers in our study had access to the internet. The proportion was higher than expected given the average age of the carers in our study was 71 (SD 10.91) years. Data from the Australian Bureau of Statistics suggest that in 2018, 62% of people older than the age of 65 years were internet users and this increased to 76% in 2022 [38]. Other studies reporting on internet use among dementia carers have tended to have a younger cohort and often use internet-based recruitment methods [32-34]. Compared to national data, our sample contained more carers who were the partner of the person with dementia, were older, and were residing in major cities [5]. Our findings suggest that it is feasible to leverage the increasing rates of internet access among older people, including dementia carers, to provide dementia care services, such as e-learning modules, virtual support groups, telehealth services, and online care plans.

Consistent with other studies illustrating the digital divide, our cross-sectional survey found that younger carers were more likely to have internet access than older carers [22,24,32,33]. Men were also more likely to have internet access than women. As a majority of carers of people with dementia are women [39], there is a need to further explore reasons for reduced uptake and develop strategies to overcome barriers to uptake among this group. Those with private health insurance were also more likely to have internet access, compared to those without. Having private health insurance is an indicator of individual socioeconomic status [40]. This finding likely reflects the costs involved in accessing digital technologies including initial financial outlay for equipment and ongoing charges for internet connection [11]. These findings suggest that dementia care resources and services must continue to be accessible through a variety of channels, particularly for carers from vulnerable population groups who often face social and economic barriers to digital inclusion.

Part of eHealth literacy theory posits that in order to effectively use internet technology, carers not only need access to the internet but also the self-efficacy to use it [41]. Accordingly, a systematic review showed that interventions designed to increase self-efficacy in the use of eHealth among older adults were associated with increases in their ability to manage health concerns [42]. We found that only one-third of dementia carers feel very confident in using the internet. There is an opportunity to help carers feel more confident in using the internet through successful eHealth literacy training programs [23,24] such as “Be Connected”—an Australian Government initiative to improve digital literacy for older adults [43]. Promoting the use of such programs may assist in improving uptake of and engagement with a range of digital health platforms. In addition, ensuring carers are provided adequate training in the use of new technologies as they are introduced will help them to feel comfortable, less frustrated, and more likely to use them [11]. Future research should consider the factors associated with confidence in using the internet and ways to build digital confidence so that the full potential of internet-based support systems can be realized.

While internet access among carers in our study was high, our findings revealed that only 17% of people with dementia were able to use the internet either independently or with assistance. This proportion is consistent with data from the Australian Bureau of Statistics which identified 12% of people with dementia as internet users in 2018 and 27% in 2022 [38]. While internet use is low among people with dementia, some individuals do engage online, benefiting from social connection, sharing stories, and accessing additional support [27,29,30]. Despite this, research has primarily focused on the development and testing of interventions aimed at carers, with little attention to the benefits and potential for people with dementia themselves or ways carers and people with dementia could use the technology together [25]. A systematic review of 90 studies found that people with dementia often required support from carers to navigate internet technologies [31]. There is a risk that increased use of internet-based solutions will increase the demands placed on carers and reduce the input of the person with dementia into their own care [31,44]. These findings highlight the need to carefully consider who will be using digital technologies and whether their needs are being met [28,30,45]. Co-designing solutions with people with dementia should be a priority to ensure digital interventions are relevant, practical, and aligned with their abilities, preferences, and online behaviors. Their involvement in the design process can lead to more effective and acceptable support tools.

Our sample included carers who were linked with support systems, such as respite services and geriatricians, and may therefore not be representative of the population caring for people with dementia. The sample was older than the general population of carers in Australia and included few people outside major cities and none from remote locations. It also did not include those who could not read and write English. These groups may face further barriers to the use of internet-based innovations. The sample size was small due to the difficulties of recruiting people from vulnerable populations [46]. Although the majority of data were collected prior to the commencement of the COVID-19 pandemic, rates of internet access among carers were comparable with rates of internet access for older Australians from 2022 [38]. While internet access and user confidence are important factors in ensuring uptake and engagement with digital health programs, other potential barriers to internet use among these populations, such as level of eHealth literacy, fears about scams and security of personal data, and affordability of internet access could be explored in future studies.

Internet use among carers was found to be high, suggesting that digital health interventions are increasingly feasible for this population. However, disparities in access and confidence remain, particularly among older, female, and socioeconomically disadvantaged carers. Internet use among people with dementia, however, was limited. The findings reinforce the importance of providing dementia care through diverse modalities. To maximize the benefits of digital health technologies, future efforts should prioritize equity in access, build digital literacy through targeted training, and ensure that online support systems are co-designed to ensure that they meet the needs of both carers and people with dementia.