Not Quite a Panacea: Technology to Facilitate Family Caregiving for Elders with Dementia

Test of a monitoring system.

Our initial foray into research on technology began innocently and naively-enough. An area agency on aging asked the Scripps Gerontology Center to explore with them how technology might assist family members caring for a relative with dementia at home. Although neophytes with respect to technology, we had a range of research and personal practical experiences with individuals with dementia and the family members who care for them.

We began by asking whether, how, and to what extent caregivers were using technology to assist them in providing care. We conducted five focus groups with twenty-six caregivers. The caregivers were predominantly female, averaged 63.2 years of age, and had spent, on average, sixty-five months caring for a relative with dementia. Three important findings emerged (Kinney et al., 2003):

First, caregivers had great concern for maintaining the safety of their relatives with dementia and were most threatened by the prospect that their relatives would wander away from home. They also identified safety hazards within the home in kitchens and bathrooms.

Second, although several caregivers used low-tech devices (e.g., "baby monitors," alarms), none used a comprehensive system.

Third, caregivers were willing to use technology, but they had no interest in becoming "technology whizzes." They were interested in accessible, affordable, easy-to-use ways to address their caregiving challenges.

Based on these results, we identified an off-the-shelf, Internet-based monitoring system consisting of motion-activated cameras and wireless sensors that communicate with a password-protected website via a broadband-connected computer. When the sensor detects activity in the home, a brief text message, saying something like, "Front door open," is sent to a cell phone that alerts the system user. Each alert is received within approximately ten seconds after a sensor is triggered. The cameras can be accessed via the website from any remote computer with Internet access, so that an authorized party (with the ID and password) in another location can watch what is happening in real time. We convened two focus groups comprising eight of the original focus-group participants to demonstrate the technology and determine whether the participants would find it useful in their caregiving efforts. The caregivers' responses were positive.

For example, one participant said, "My husband is healthy, except for this disease-he could be wandering for years. Wandering is my number-one problem. This technology could help."

Another participant agreed: "Yes, it is wonderful! My daughter really doesn't understand what it is like. She comes down once a month, but that's really not enough; if you don't live with it."

One participant had a more opportunistic take on the technology: "Someone could make a lot of money, with this. I could have a home business, and give up my day job. I could work out of my home, watching people for others so that they could get out."

Next, we conducted an ecologically valid evaluation of the technology (Kinney et al., 2004). We recruited a new group of nineteen caregivers who agreed to have the technology in their homes for twenty-four weeks. The caregivers, recruited through two area agencies on aging in Ohio, were diverse by race/ethnicity (four blacks, one Hispanic, one Asian, and thirteen whites), sex (eleven females), and kinship tie (seven spouses of the individual with dementia, ten adult children, one sister, one grandniece). On average, caregivers were 54.86 years old, had completed high school, and had been caregiving for forty-one months. The average age of individuals with dementia was 75.70 years, fourteen were female, and all were severely impaired (the average Dementia Rating Scale, [Mattis, 1973] score was 72.56).

The monitoring system we installed in the nineteen homes is only a system in the loosest sense, consisting of different technologies that we bundled together: a Pentium II computer; a broadband service; a Xanboo Smart Home Management System that consists of a controller, Internet-enabled devices (e.g., cameras and sensors), and software (Xanboo also operates the website); a Motorola cell phone; and Verizon cell phone service with text-messaging.

The evaluation process was more labor-intensive than we had envisioned. A member of the research team initially screened families by telephone. In a home visit, a team member visit collected baseline psychosocial data from the primary caregiver and the individual with dementia and planned the intervention for that specific family. These initial home visits averaged 2.5 hours.

In a second home visit, the system was installed (including a computer if the home did not already have one, and a broadband connection), and a member of the research team taught the caregiver how to use the monitoring system and the cell phone. On average, caregivers chose to have 2.0 cameras (max = 4) and 2.75 door sensors (max = 4); seven caregivers chose at least one water sensor, and one chose to have a power on-offsensor. Installations averaged 2.25 hours, including time to make sure that the system was functioning as intended and to provide the caregiver with basic training on how to use the system.

We had planned to evaluate the nineteen families' use of the system for twenty-four weeks, using biweekly telephone conversations with caregivers to determine and record the patterns of use of the technology system. In fact, our telephone and face-to-face interactions with many of the families were far more frequent than biweekly. In addition to the training they received during installation, caregivers required ongoing assistance and training that we had not foreseen. For example, they were shown how to reset the system if a "glitch" occurred and how to empty the cell phone's message box so that new alerts could be received. Although many of these issues could be resolved over the telephone, others required home visits. Whereas their prior experience with computers and cell phones determined the amount of initial training that caregivers required, it did not predict the frequency with which participants contacted us with questions. Still, all participants ultimately became proficient using the system, regardless of their prior experience.

We had planned to assess all families for twenty-four weeks, but over that period, six of the families were lost to attrition (e.g., some care recipients lost the ability to ambulate, and one caregiver found the system "too bothersome"). We conducted debriefing interviews with sixteen caregivers (including thirteen who had used the system for the entire twenty-four weeks) to assess the impact of the technology. Fourteen of the caregivers reported that the system made their lives easier, and eleven indicated that it had a positive impact on how they spent their time. Seven of the caregivers also identified ways that the technologies made their lives more difficult (e.g., "It is "just one more thing to worry about"). When asked whether they would like to continue to use the monitoring system at the completion of the evaluation, all participating caregivers but one said they would. The only one who declined said her relative's dementia had progressed to the point that the system was no longer useful.

After this research experience we realize that our goal of providing caregivers with a "set it and forget if" technology system was unrealistic; technology is not yet "settable and forgettable," learning curves vary widely across caregivers, and, with ongoing use of the technologies, issues that require problem-solving are bound to arise. Still, although this type of technology is not a panacea for keeping all individuals with dementia safe, and it is not necessarily a long-term intervention, it is a potential resource that many caregivers might find useful when caring for a family member with certain stages of dementia.

A legitimate question is whether this intervention could or should be converted into a service. Our response is a qualified yes. Clearly, the cost of this technology (approximately $1,000 at start-up for equipment; $100 per month for broadband, website, and cell phone) is far less than the cost of institutional care (even for a single month). What is more, we provided the technologies but did not offer monitoring services, which obviously would add a layer of complexity (and cost) to this intervention. As researchers continue their efforts in this area, it is essential that they participate in the emerging dialogue on fundamental issues in the implementation of technological interventions and the translation of research interventions into services. In particular, issues related to privacy, personal control, and safety for all members of these families must be of particular concern.

[Reference]

REEBRENCES

Kinney, J. M., et al. 2004. "Striving to Provide Safety Assistance for Families of Elders: The SAFE House Project? Dementia: The International Journal of Social Research and Practice 3: 351-70.

Kinney, J. M., et al. 2003. "Challenges in Caregiving and Creative Solutions Using Technology to Facilitate Caring for a Relative with Dementia." Ageing International 28(3): 295-313.

Matris, S. 1973. Dementia Rating Scale. Odessa, Fla.: Psychological Assessment Resources, Inc.

[Author Affiliation]

Jennifer M. Kinney, Ph.D., is professor of gerontology, and Cary S. Kart, Ph.D., is senior researcher, both at Scripps Gerontology Center, Miami University, Oxford, Ohio.