This article describes the participation and perspective of caregivers and MPs for an individualized, interactive web portal (eHM-DP) early in the development process. To our knowledge, our pilot study is the first of a personalized and interactive web portal, aiming at empowerment and decision aid and including perspectives of caregivers and MPs. Thus our study contributes to scientific research by providing new insights into the development of eHealth solutions in dementia care from two important user perspectives. This is crucial for the further development and uptake of eHealth services in the dementia care setting. Furthermore this is particularly relevant against the backdrop of an aging society and limited healthcare expenditures of health care systems, combined with an increasing number of informal caregivers willing to use internet and mobile electronic devices [10, 15, 32–34].
The findings from our pilot study indicate the potential of the eHM-DP for caregivers with regard to caregiver empowerment (knowledge, decision aid), facilitated access to health care services, and promoting interaction with MPs. Only a minority of participants expressed concerns that the use of the eHM-DP would bring a lack of personal contact with MPs. This result is of great importance, as the eHM-DP was designed to complement and not substitute existing treatment and care activities. However, the threat of technologies, to replace valued, human contact has been reported in previous studies [21] and has to be taken into account carefully when introducing new technologies.
From the caregivers’ perspective, the implemented diary features are helpful in increasing their awareness of symptoms and dementia-related topics. Further, in providing assistance in making particular decisions on a situation-to-situation basis in response to individual diary entries. One of three major factors that contributed to these findings was the quality of providing needs-oriented support with the help of the eHM-DP. The provision of individualized information was rated as the most useful benefit as perceived by caregivers, which corroborates to the findings by van der Roest et al. (2010) [25]. Major reasons for its perceived usefulness are the support for individual care situation (help), a reduction of time in searching for information and support, and real-time support. In addition, the functionality of an active search form for specific terms and institutions was requested by caregivers. A second factor that contributed to our findings was the support provided for the caregivers’ specific, unmet needs. These findings are in line with the findings from Brodaty et al. (2005) [6], where the principal reason for the use of community services was the perceived support for unmet needs. The highest level of agreement for support was perceived for: increased knowledge in dementia treatment, knowledge about (local) support services and knowledge about preventing any burdens that may arise while caring for PwD. By increasing awareness of and knowledge on (local) support services, the eHM-DP contributes to reduce barriers for the utilization of existing local support services. This is of great importance, as the lack of knowledge on existing services and dementia infrastructures contributes to one of the four major reasons for non-use of such services [6]. Also, findings from previous studies highlighted the advisable priority of providing information on dementia services and accessing them [6, 30]. The third factor concerns the interaction between caregivers and MPs via the messaging function within the portal, which caregivers perceived as the second most useful benefit of the eHM-DP. These findings are in line with those from Chiu et al. 2009 [23] where users felt that email communication was useful for expressing individual concerns and receiving immediate support from a medical professional. The information provided and interactivity with MPs are major benefits, particularly for reaching caregivers that are immobile (‘home-bound’ due to health status or a lack of transport, public or otherwise) [6] or isolated (e.g. living in rural areas). Thus, the eHM-DP can lower the threshold of access to health care services by accessing support in the privacy of their own homes (without leaving the PwD alone) and by collecting dementia-specific information and knowledge sources. Additionally, the caregiver can use the eHM-DP whenever she/he is free of caregiving duties. In this context, further research is needed to investigate the cost-effectiveness of the eHM-DP. In addition, the eHM-DP would likely benefit from supplemental interaction between caregivers (chat, forum), which was expressed by caregivers during our pilot study. In this case, the eHM-DP would benefit from an identification of existing local or international forums or chats of high quality, such as offered by the Alzheimer’s Association (‘ALZConnected’ [35]). Further aspects that must be taken into account for future portal development are average frequency of use, time of use as well as technical support.
From the MPs’ perspective, the combination of diary features was perceived as very useful since essential and hard to access information that is relevant for medical treatment and care were duly provided, including: longitudinal data on the course of the disease (cognition, ADL, IADL, disturbing behavior, mood, social behavior), longitudinal data on the circumstances revolving around the home-based care (time provided for care, ADL, IADL, caregiver burden) as well as medication history (67 % of MPs reported that the eHM-DP contains relevant information on medication treatment). MPs reported these as being the primary perceived benefits of the eHM-DP, which could potentially also include a preventive aspect. For example, by the prevention of caregiver burden, the eHM-DP has the potential to lower direct (hospitalization, institutionalization) as well as informal costs of care in the dementia setting, particularly against the backdrop of personal burden of informal care is one of the main purposes for nursing home transfers [36, 37]. However, further research is needed to examine this hypothesis and its cost-effectiveness. A second benefit for MPs concerns the improved interaction with caregivers as well as with other MPs involved in the dementia treatment and care process. Further optimization of the eHM-DP would benefit from institution-specific subgroup analysis (e.g. memory clinic vs. caregiver counselling organization). Synonymous to the caregivers’ perspective, data security constituted one of the major concerns of MPs, too. The dilemmas around privacy and autonomy versus safety were already reported by Powell et al. [21] and its debate is crucial for the uptake of an eHealth service. A further aspect was addressed as an insufficient use of the eHM-DP from both parties (caregivers and MPs). This is an understandable concern, as the effectiveness of the eHM-DP depends on regular portal usage from both user groups. However, both, caregivers and MPs stressed the relevance of the needs-oriented, perceived benefits of the eHM-DP, which is an important precondition for proactive and regular use of the portal [6, 21]. According to recommendations from a previous interview study on technologies for caregivers of PwD [21], the eHM-DP shares the need for addressing the following key aspects to enhance the use of the portal: an active facilitation of the service uptake, the need to address barriers of adoption (e.g. privacy issues, impact on caregiver time, computer skills of users), and to emphasize the complementary character of the portal (no substitute to human contact).
In contrast to existing eHealth tools for informal caregivers of a PwD (e.g. DEM-DISC [25], Alzheimer’s Association Online Tools [26, 35]), the eHM-DP is innovative in providing an individualized and interactive web portal which provides specific and several benefits for both, informal caregivers and medical professionals. However, further eHM-DP development should exploit potential synergy effects between existing, complementary systems, such as Ambient Assisted Living (AAL)-systems (e.g. ALLADIN [38]), self-management systems like SmartAssist2 [39], educational online courses (e.g. Mastery over Dementia [40]) or chatrooms (e.g. ALZConnected [35], ANKER [41]).
Limitations
Although the findings in our study provided essential and new insights into the impact on e-Health support services for caregivers of PwD and for MPs, there are certain limitations that must be taken into account. The first limitation is reflected in the rather small number of participants. However, the strength of our study is that different user perspectives (caregivers, MPs) were included. The second limitation was that no hands-on practice was executed while demonstrating the functionality and use of the eHM-DP, although a demonstration itself was provided. As outlined in the introduction and methods sections, the aim of our pilot study was to involve the user’s perspective early in the development process of the eHM-DP. However a field trial of the portal at the last stage of the project, including the implementation of the pilot study’s results should provide new insights into the impact of the eHM-DP on day-to-day circumstances of caregivers and MPs.
