O3‐02‐05: Using technology to maximize the quality of life of people with dementia in adult day centers, assisted living facilities and nursing homes

Methods to reliably and validly assess the quality of life (QOL) of people with dementia are needed to: refute myths that people with dementia lose their identity or capacity for enjoyment; ensure that programs maximize the well-being of people with dementia; create the proper environment where people with dementia can thrive; and educate staff and family members. The well-being of people in residential care settings depends greatly on the people, programs, services, and physical environment that not only support them, but capitalize on their remaining abilities. Thus, the difference between a life of the “three plagues” (Thomas, 1996) from which too many nursing home residents suffer - loneliness, helplessness, and boredom - and a life in which the number of occasions of fun and fulfillment are maximized, often depends on creating opportunities for people to engage in enjoyable and productive activities. While good quality of care is a necessary component of good QOL, it is not synonymous with good QOL. Care that is of good technical quality can be blind to critical components of QOL such as engagement in meaningful and pleasurable activities. In U.S. nursing homes, information is routinely collected on quality of care indicators through the Minimum Data Set, but data are not routinely collected related to how people with dementia experience the daily activities that collectively constitute their well-being or QOL. A major reason is the lack of a reliable, valid, useful, and practical method of measuring the QOL of persons with dementia. Lacking an appropriate measure, the ability of researchers, practitioners, and assessors to evaluate the efficacy of current programs and new interventions is significantly compromised. OQOLD (Observing Quality of Life in Dementia) is an observational procedure pilot-tested during a seven-year period which enables researchers and practitioners to make systematic, reliable and valid assessments of the QOL of people with dementia based on verbal and non-verbal cues, and indicators of engagement and affect. The current study describes the development of OQOLD, benefits identified and findings of two pilot-tested technological enhancements to OQOLD on mobile devices, aptly named mOQOLD. The study reports findings from a Phase 1 (3 study sites; N= 20) and a Phase 2 (11 study sites; N=110) test of the feasibility of enhancing OQOLD via technological improvements, conducted at dementia-specific nursing homes, assisted living facilities and an adult day centers in Phase 1 and 2. OQOLD assessments are made in conjunction with activities which are broadly defined to include activities of daily living as well as staff-facilitated small/large group activities and one-on-one-activities. To maximize ease of use of the scale, a number of methods of conceptualizing QOL are included. The coding system is comprised of a seven-point scale ranging from +3 (an extremely pleasant experience) to -3 (an extremely unpleasant experience), with each point of the scale formally defined. Definitions are accompanied by illustrated faces (smiley to sad) that represent the experience, as well as examples. Verbal anchors are also attached to the midpoint and endpoints of the seven-point scale (+3 = excellent, 0 = neutral, -3 = terrible). For example, the highest possible OQOLD score (+3) is called “Excellent” and is defined as: “An extremely pleasant experience. A very enjoyable OR high level of verbal or non-verbal engagement with others or an activity.” The examples given are: “Having a very enjoyable conversation with another person(s), OR a very enjoyable interaction with a pet, OR a very enjoyable or high level of engagement in talking, singing or playing games.” A training toolkit includes videotaped interactions of nursing home residents which are used to develop OQOLD users’ reliability; a minimum reliability (match of users’ scores and the scores provided by the developers of OQOLD) of 80% is required.Technological enhancements including data entry via an HP iPaq in Phase 1 and currently on an iPod Touch in Phase 2, wireless transmission of QOL data to a laptop/desktop computer and intuitive, user-friendly software specifically designed to enable practitioners to produce a variety of reports that can enhance the dementia care practice and the well-being of participants were integrated with the OQOLD system. Pilot research findings have documented benefits including: (1) improving staff knowledge of the impact of their behavior on participants (e.g., observations during lunch time have been used to inform the dietary and nursing staff regarding methods of improving participants’ food consumption) and (2) motivating change in care plans by using OQOLD to assess the impact of two different dining settings. Key findings from the study to assess technological enhancements to OQOLD included: (1) the OQOLD handheld data recording device was considered user-friendly based on high ratings (4 or 5 on a 5-point scale) for all five usability measures: functional (77%), efficiency (70%), cognitive load (54% ), and user satisfaction (60%); (2) only 42% of all sessions were without any errors (this was enhanced in Phase 2); (3) management staff found the OQOLD data to be useful (an overwhelming 72% of the responses were 4 or 5); and (4) management staff expressed an interest in having greater flexibility regarding producing reports (this was enhanced in Phase 2). Staff indicated that they strongly believed that the QOL information has great potential for improving their dementia care practices; 8 out of the 12 staff members in the study gave the following benefits the highest rating (“very useful): (1) assessment of the impact of a program/activity on a specific resident/client, (2) provision of feedback to family members and (3) provision of feedback to administrators in their organization. The OQOLD system provides critical information regarding the impact of specific activities on specific participants that enables staff to match activities to individuals’ needs, abilities, and interests. OQOLD provides reporting with flexibility to answer a variety of practice-relevant questions. This information can be used to revise participants’ care plans and the collection of OQOLD data on a regular basis can be used to assess the success of changes instituted. OQOLD data could be especially helpful to determine the most beneficial activities for new participants or when individuals’ condition and abilities change.Technological enhancements maximize the usability and practicality of OQOLD by providing a device that offers ease of data entry and practice-relevant information for staff. The portable data recording device, carried by a staff member in his/her pocket with wireless synchronization, minimizes disruption to daily routines of staff and participants. OQOLD data can be continuously transferred to a secure internet site for storage and accessed via a laptop or desktop PC for management and report-generation. The routine assessment of QOL in clinical care settings affords a benefit in that the very act of inquiring about the QOL of persons with dementia recognizes them as individuals with varying needs, desires and abilities. Another benefit is the use of QOL measures for training purposes or to identify the impact of programs and activities on participants. The ability to improve participants’ QOL may lead to higher staff satisfaction and longer job retention. QOL information may enable relatives of persons with dementia to better understand the status of their loved ones, beyond the physical health indicators that are the basis of most care plans. This might not only promote higher satisfaction, but it may help family members interact more effectively with their loved ones during visits. Regulators could use QOL measures to make their assessments more relevant in ways that make a qualitative difference in the lives of participants. Most importantly, by making available data which reliably and validly measure dementia-specific QOL, staff will be able to appropriately modify and/or target programs, services and activities to maximize the benefits received by people with dementia.