Options to Address

the Situation

     Technology may used to significantly advance AD caregiving, with respect to increasing knowledge access and use, as well as to provide caregivers with opportunities to experience risk-free skill-building exercises.  Specifically, this paper will first examine the use of existing web-based training and information for caregivers.  These existing options consist of conferencing and online chat rooms/support groups.  Secondly, the concept of knowledge management systems (KMS) will be introduced.  The purpose of KMS is to capture and organize knowledge in such a way that it can be accessed and interacted with by stakeholders for the increase in intelligence.  Finally, this paper will describe how virtual reality technology can transform knowledge and provide caregivers with experiential skill-building opportunities.

Currently Available Options

     Today, there exist a number of web-based applications that address caregivers’ need for information and skills building.  These tools vary in their ability to meet caregivers’ needs and the depth of knowledge that can be accessed.   


     One existing option uses LISTSERV software for conferencing.  Caregivers and others who are networked via the Internet can exchange information, ask questions or seek answers using this tool (Schoech, 1999).  An example of a LISTSERV which comprehensively addresses the many concerns of AD caregivers, as well as professionals and other laypersons interested in AD, is a list maintained by Washington University’s Alzheimer’s Disease Center in St. Louis (see Appendix A).  Referred to as an “e-mail based support group for family caregivers and professionals”, this list allows users to post questions and receive current answers.  It also maintains an archive of questions, answers and threaded discussions for users to access.  Washington University ADC’s list provides caregivers with quick, easy access to the information they might need to deal with a problem behavior.  Keyword searches and a list of frequently discussed topics (see Appendix A) allows caregivers to find what they need with relative speed. 

     However, there are some drawbacks to this type of technology.  Privacy issues are one of the primary issues of concern with this technology format.  In the threaded discussions, questions and replies, the users’ email address is posted.  One must keep in mind that these messages can be accessed by anyone, not just those subscribing to the LISTSERV.  Therefore, privacy and confidentiality may be a major concern to some users.  A second drawback is the sheer volume of e-mails a subscriber may be subject to on a daily basis.  Depending upon the activity level of the list, a subscriber may receive from 10 to 40+ messages daily (http://www.adrc.wustl.edu/alzheimer/subscribe.html/).  Some users may be overwhelmed by this volume of messages, and thus may prefer to access the archived items without becoming a subscribing member.  Finally, the quality of the advice and information provided cannot be validated.  A user must be aware that this information may be only one person’s opinion regarding how a specific situation should best be handled.  Thus, caution should be used when using lists as a main source of information and training.

Online Chat / Support Groups

     Online chat rooms/support groups are another popular source of information dissemination and support for AD caregivers.  According to Schoech (1999), chat allows “real-time communication between multiple people connected simultaneously to the Internet” (p.40).  This modality is widely available, with groups developed specifically for the caregiver of the AD patient, and even for patients themselves (see Appendix B).  Virtual support groups, like face-to-face groups, allow for immediate peer response to inquiries from participants.  Unlike face-to-face groups, participants do not have to travel to a specific location for meetings.  For caregivers who have limited mobility due to their caregiving responsibilities or health considerations, online support groups may be their most viable option.  Additionally, there exist support groups that meet at nearly every time imaginable; thus, it is likely a caregiver will be able to find an ongoing chat group at their moment of need.

     Several limiting factors should be considered when examining the best use of online support groups.  First, because of the simultaneous input from multiple users, chat room conversations may not be easy to follow.  Several sub-groups may form, making coherent discussions even more difficult.  Similarly, conversations may be difficult to keep up with if the user has less than nimble fingers and typing skills.  Some users may experience frustration as they find that the response they just finished typing fits a question that has long been obscured by other lines of discussion!

Advanced technology options           

Knowledge Management Systems

    Knowledge management systems and the use of virtual reality are two other options that may serve to meet the needs of caregivers.  These technologies will be the focus of the remainder of this paper.  Both currently exist, although they are being used in contexts other than AD care.  However, knowledge management systems (KMS) and virtual reality (VR) show promise for applicability to the AD caregiving problem under investigation.

   Knowledge management systems have the potential of capturing the existing knowledge possessed by experienced caregivers and professionals, for the purpose of enhancing future caregiving training.  Stein and Zwass (1995, as cited in Damodaran and Ophert, 2000) assert that it is essential for organizations to access past design solutions, plans and outcomes in order to make effective decisions and engage in knowledge-intensive work.  Similarly, caregivers and AD professionals could greatly benefit from access to the decisions, solutions and outcomes previous caregivers have encountered in typical caregiving scenarios.  According to the Delphi Group (1997, as cited in Frappaolo & Capshaw, 1999), KMS performs four primary functions: intermediation, externalization, internalization, and cognition.  Intermediation refers to the connect of people to people and sharing of tacit knowledge; externalization refers to the explicit knowledge exchange between information sources; internalization refers to the connecting of explicit knowledge from a repository to the knowledge seekers; and cognition refers to the connection of knowledge to a system.

   Using KMS, especially in conjunction with case-based reasoning (CBR) knowledge can be created out of the vast amount of data put into the system.  As defined in Schoech (1999), case-based reasoning is the "process of developing solutions to unsolved problems based on pre-existing solutions of a similar nature" (p.100).  One reason KMS and CBR applications would be worthwhile options to explore is that a vast knowledge base already exists and could be transferred into such an application.  Using the situation, problems, solutions and outcome descriptions cached within the thousands of discussions archived in Washington University Alzheimer's Disease Center's LISTSERV application, there would be a substantial base upon which to build.  The existing knowledge is derived from the real-life experiences of AD caregivers and professionals, and thus would generate realistic and applicable intelligence through KMS. 

   According to Frize and Frasson (2000), KMS and CBR are increasingly being accepted within the field of medical education and as part of clinical decision-making.  Support for KMS and CBR is based on the premise that the system will allow physicians to access cases similar to those at hand - many more than could be recalled from their memory of past experiences.  Thus, physicians will be better equipped to make appropriate clinical decisions (Frize & Frasson, 2000).  Similarly, caregivers could derive solutions to their caregiving dilemmas by accessing and processing the experiences of other caregivers through KMS.

   Software options already exist for KMS within the business world.  These systems might be adaptable for use in the human services environment.  Some examples of current KMS software include LiveLink by OpenText Corporation, and Knowledge Associate's solution to KM (see Appendix C).  By using a KMS as the basis for a 24-hour hotline or real-time "Ask an Expert" site, caregivers could gain access to viable solutions to some of their pressing questions.  Below is a summary of some of the advantages and disadvantages of KMS and CBR.

Advantages Disadvantages
  • Experiences of real caregivers can be captured and not lost to future generations.
  • Transferring existing data to KMS may be labor intensive.
  • CBR will help professionals re-examine long held beliefs about "best practices" and determine whether they should be considered as such.
  • "Territorial" disputes may arise over the sharing of knowledge as KMS expands beyond the boundaries of a single agency.
  • Web-based access will enable information to be utilized at the time it is needed - by Helpline/Crisis Hotline workers, or even on a real-time Ask the Expert site (see Appendix D).


Virtual Reality 

    The second advanced option that should be considered to address the problem defined in this analysis is use of a virtual reality (VR) simulation to provide caregivers with realistic experiential learning opportunities.  Using VR software and peripheral devices such as 3-D head mounted displays (HMD) and other output devices, the user can be exposed to an array of visual, audio and tactile stimuli.  These devices work together to produce a virtual world that can be programmed to recreate scenarios in which the users become immersed.  In this way, users become participants rather than mere observers in the educational experience (Kalawsky, 1999).

   Simulated experiences through VR technology are currently being successfully utilized as training and treatment modalities in the medical, aviation and military fields.  Several examples from these fields hint at the feasibility of expanding the use of VR to human services (Stansfield et al, 2000).  In fact, VR has already been used for treatment in specific phobia conditions and anxiety disorders (Anderson et al, 2001). 

   Through VR, a person can be immersed in an environment which would typically evoke an anxiety reaction, while the therapist maintains control over the situation.  Anderson et al (2001) cite several studies demonstrating valuable outcomes in response to VR exposure therapy. Self-reported anxiety and avoidance of heights was reduced in a group of people with acrophobia undergoing VR treatment (Anderson et al, 2001).  Similarly, in several studies conducted with patients who had a fear of flying, the results indicated that VR exposure was as effective as actual exposure treatment for reducing fear.  Additionally, a six-month post-treatment follow up study found no significant differences in outcome maintenance between those who had received actual exposure and those who received VR exposure (Rothbaum, Hodges, Smith, Lee & Price, 2002, as cited in Anderson et al, 2001).

    Researchers hoping to build on the success of VR treatment for phobic conditions (see Appendix F) are turning their attention toward modification of problematic interpersonal behavior (Glantz, Durlach, Barnett & Aviles, 1993, as cited in Anderson et al, 2001).  The focus on social phobias may be more closely related to the VR technology needed to address caregiver training issues.  Both pose logistical challenges due to the need for realistic verbal, visual and physical interaction between the user and virtual humans.  Anderson et al (2001) feel that advances in the integration of video to VR may help clear some of the barriers to modeling human characters in virtual environments.  With video components, behavioral role-plays may become more realistic and effective (Anderson et al, 2001).

Another VR platform that is closely related to the format proposed for use in caregiver training exists within the field of emergency response.  Sandia National Laboratories created the BioSimMER application (See Appendix G) to address the need for experiential training opportunities for emergency response workers (EMS, firefighters, police) who would be called upon in the event of a bioterrorist attack.  The complex nature of the emergency response situation, including verbal and physical interactions between virtual patients and emergency response workers in the real world, lends itself to adaptation to the caregiving simulation.  The hardware and software used in this model are both commercially available and could be similarly used to create VR environments dealing with different scenarios (Stansfield et al, 2000). 

The following is a summary of the advantages and disadvantages of implementing a VR solution:

Advantages Disadvantages
  • Increased retention of learned responses with use of VR HMD condition (Mania & Chalmers, 2001).
  • Cost – although the technology is becoming more common, the cost is still considerable.  Implementing a VR solution would lend it self to developing the application within an academic setting that is already working on VR projects (Stansfield et al, 2000)  
  • Decreased risk of exposure to dangerous conditions to the user.
  • Motion sickness-like symptoms are a common side effect of immersive VR exposure (Mania & Chalmers, 2001).
  • Training/role play can be more realistic and invokes similar autonomic response in users as real environment (Anderson, Rothbaum & Hodges, 2001).