Use of nonintrusive sensor-based information and communication technology for real-world evidence for clinical trials in dementia

Cognitive function is an important end point of treatments in dementia clinical trials. Measuring cognitive function by standardized tests, however, is biased toward highly constrained environments (such as hospitals) in selected samples. Patient-powered real-world evidence using information and communication technology devices, including environmental and wearable sensors, may help to overcome these limitations. This position paper describes current and novel information and communication technology devices and algorithms to monitor behavior and function in people with prodromal and manifest stages of dementia continuously, and discusses clinical, technological, ethical, regulatory, and user-centered requirements for collecting real-world evidence in future randomized controlled trials. Challenges of data safety, quality, and privacy and regulatory requirements need to be addressed by future smart sensor technologies. When these requirements are satisfied, these technologies will provide access to truly user relevant outcomes and broader cohorts of participants than currently sampled in clinical trials

Crossing the digital divide : family caregivers' acceptance of technology

The purpose of this pilot project was to collect data on how electronic technology might be used to assist family members who are caring for a relative with dementia at home. In Phase 1, we conducted five focus groups with 26 caregivers of relatives with dementia to document the specific challenges faced by caregivers and assess their access to, and familiarity with, electronic technology. In Phase 2, a technology-based solution B the Xanboo Smart House Management System B was identified. The System allows monitoring of a residence through placement and control of video cameras and other enabled devices, including sensors that detect motion, the presence of water, or noise. Sensors may be set to provide a caregiver or other interested party with immediate notification by e-mail, pager, or text messaging cell phone. In Phase 3, a household was outfitted with The System and two focus groups comprised of 8 caregivers to relatives with dementia were conducted to evaluate its utility. The report concludes with an annotated bibliography on technology and aging, with special focus on caring for a relative with dementia. Key Findings: Caregivers and the relatives for whom they provide care are in an evolving struggle to maintain continuity of roles, relationships, and lifestyles. Challenges include the safety of the individual with dementia and keeping geographically distant family members aware of their relative s condition. Caregivers used a range of technologies in their day-to-day lives, including low- tech solutions to challenges in caregiving. Caregivers felt strongly that technological solutions were neither appropriate nor useful across all situations, and were cognizant of the inherent trade-off between safety on the one hand and dignity, respect, privacy, and desires for independence and autonomy on the other hand. Caregivers do not aspire to become technology whizzes ; rather, they are interested in easily obtained, affordable, easy to use, solutions to some of the challenges they face. An affordable, easy to use, off the shelf, monitoring system (The System) was identified. Caregivers attitudes regarding The System were generally quite positive. When prompted to identify barriers to using The System, caregivers identified the need for a computer and Internet access, and cost. Conclusions: The results from this pilot project suggest that there are affordable technologies that can assist family members in their efforts to care for relatives with dementia at home, and that these caregivers were amenable to the use of these technologies. Future efforts should evaluate the installation, use, and impact of The System in the homes of family caregivers to relatives with dementia

A Comparison of the Effectiveness of Distractors Identified Through Stimulus Preference Assessment Versus Caregiver Opinion

The effect of a distraction-based intervention on positive affect and aggressive and distress-related behaviors during morning activities of daily living in an elderly dementia patient was tested. Concurrently, the effectiveness of distractors chosen by staff and family report as compared to those chosen through a stimulus preference assessment (SPA) was tested. An alternating treatment design was used to implement identified distractors and a direct observation system was used to measure outcomes. Though staff reported increases in positive affect when using an edible chocolate distractor, no significant changes in positive affect or distress related behaviors were noted by the end of the final treatment phase when compared to initial baseline responding. This was likely due, in part, to the participant\u27s decline in physical health over the course of the study. With regard to the comparison of methods for identifying distractors, data tended to support the usefulness of a SPA for identifying effective distractors over that of family opinion, but was equally as effective as caregiver opinion. Further research is needed to better understand these outcomes

Enhancing care homes with assistive video technology for distributed caregiving

Dementia care is becoming increasingly important in Japan as the elderly population grows. Care homes are designed so that caregivers can easily observe and subsequently respond to the needs of people with dementia. However, the layout of care homes can become overly restrictive for residents, for example, by not providing intermediate spaces where people can spontaneously interact and initiate conversations. We present a case study that explores the implementation of video monitoring in two purpose-built care homes in which we were asked to help overcome the blind spots presented by the layout. We collected data both before and after the implementation of the video monitoring in order to understand its effect. The balance between people’s sense of security and the concerns about loss of privacy through video monitoring is well established. However, we found that video monitoring had a beneficial effect on both the caregivers and the residents if implemented sensitively. Furthermore, the implementation of video monitoring could support the design of more beneficial care home layouts. In conclusion, we propose that the sensitive implementation of video monitoring be considered alongside design of the physical layout of care homes

GPS Tracking in Dementia Caregiving: Social Norm, Perceived Usefulness, and Behavioral Intent to Use Technology

Remote monitoring technology has taken a place in dementia caregiving by providing assistive tools such as tracking devices using Global Positioning Systems (GPS). Nevertheless, caregivers’ attitudes toward this technology are still inconclusive, and the factors leading up to their behavioral intent to use the technology remain unclear. Based on a survey of 202 dementia caregivers, our analysis with structural equation modeling demonstrates that care recipients’ (i.e., persons with dementia) wandering, caregivers’ concern, as well as caregivers’ smartphone usage positively predict caregivers’ behavioral intent to use GPS tracking devices. Meanwhile, social norm and perceived usefulness of technology mediate the relationship between individual attributes and behavioral intent. Theoretical and practical implications are discussed

Doctor of Philosophy

dissertationQuality of life for people with dementia is a topic of great concern and study, due in part to the growing number of people diagnosed with Alzheimer's disease and other dementias. Happiness is an important aspect of well-being and quality of life, yet the subjective experience of happiness in dementia has not been explored. The purpose of this study was to examine the subjective experience of happiness for persons with mild to moderate Alzheimer's disease from the perspective of the person living with the disease and their caregiver through the use of photo-elicitation with autodriving methodology. A sample of 12 persons with mild to moderate Alzheimer's disease were given cameras and asked to take photographs representing happiness. The 12 caregivers were invited to participate in the study; 10 agreed. Caregivers were given cameras and asked to take photographs representing happiness for their care recipient partner. The photographs served as the basis for one-on-one interviews between the participant and the researcher. In this study, persons with Alzheimer's disease identified long-held values as important to their happiness, including connection to others, nature, transcendence, preservation of self, and joyful moments. Individual differences and nuanced interpretations were noted within each identified value. Many of the same images were taken by the caregivers. However, study results point to the caregiver's general lack of awareness and understanding of the presence and role of values. The implications of this work are significant in that they help to advance our understanding of happiness in Alzheimer's disease and propel us forward toward the development of measures and interventions supportive of quality of life in this population. Additionally, the findings of this study further our understanding of the inter-subjective relationship of the person with Alzheimer's disease and the caregiver, underscoring the need to support both members of the dyad through person-and family-centered care to improve quality of life and maintain the personhood of both the person with Alzheimer's disease and the caregiver. Finally, this study broadens our understanding of Alzheimer's disease from the current paradigm of despair and loss to one that includes the possibility of happiness and well-being

Intergenerational Programming: Yesterday\u27s Memories, Today\u27s Moments, and Tomorrow\u27s Hopes

Even though the numbers and scope of intergenerational programs continue to grow, research about their impact is limited. The purpose of this study was to compare 12 behaviors of older adults in the presence of absence of children. Six adults with dementia, aged 57 to 86, were videotaped during 10 art activities, 5 with preschool children and 5 with peer adults. The design was a quasi-experimental applied behavioral analysis. Chi-square tests showed that the older adults\u27 behaviors were significantly dependent on children\u27s presence or absence. Repeated measures ANOVAs indicated that children\u27s presence or absence had a significant effect on the older adults\u27s behaviors. Discriminant analyses identified looking and touching as behaviors that best characterized activities with children present or absent. The results of this intergenerational research project support further growth and development in programming and multidisciplinary collaborations that will, in turn, benefit older and younger generations