A Web-Based application for Patients and Caregivers

A Web-Based application for Patients and Caregivers 1. The Reminiscence system Based on our findings in the pilot study (Sarne-Fleischmann and Tractinsky, 2008), a new Flash web-based application was developed to enable independent use and administration for both patients and caregivers by including two main components in the structure. The front-end component supports the patient’s interaction with the system during the therapeutic sessions. The back-end component facilitates the addition, update, and management of content. This component was designed for the use of caregivers and family. The application was developed by an experienced subcontractor according to a detailed design and the specifications provided. Great emphasis was placed on the system’s design and on simplicity of use, given the specific characteristics and limitations of the target users. Features included a very simple interface (offering the user a limited number of options in order to avoid cognitive overload); minimizing visual distractions on the display; avoiding the use of animations or competing stimuli at any given time; using subtle graphics through calming color schemes; and using a touch screen for all required interactions to support the most natural interaction style. The new systems hierarchy included only three levels to support simple and intuitive flow: Login – Entering the system by identifying the patient. Select Album – Selecting the required album from up to six albums presented. Album View – Watching the media files associated with the selected album. The navigation between the three levels is done hierarchically and is bi-directional. The reminiscence system has two different interfaces: Hebrew and English. The two interfaces are separated (each is accessible via a different link) so there is no option of switching to a different language while interacting with the system. A usability evaluation was conducted prior to the commencement of the evaluation study, in order to evaluate the appropriateness of the new system for the target audience (Sarne-Fleischmann, Tractinsky, Dwolatzky and Rief, 2011). The usability evaluation included three Alzheimers patients, who were asked to use the system in separate sessions, while being observed and interviewed regarding their mental model of interacting with the system. Based on the usability evaluations results, several modifications were made to further improve the system. 2. Methods 2.1 Patient sample The participants of this study were older subjects with cognitive impairment or dementia who resided in the community and regularly attended an adult daycare center at least twice a week. The inclusion and exclusion criteria are described in Table 1. Table 1: Inclusion and exclusion criteria Inclusion criteria Exclusion criteria (1) Age – above sixty years old (5) Psychiatric disease (2) Cognitive impairment – mild cognitive impairment (MCI) or dementia (MMSE score of 14-26) not associated with a known medical condition (such as stroke, vitamin deficiencies, impaired thyroid function, among others) (6) Significant visual or auditory impairments or any other impairment which may prevent the participant from using either of the two computerized interventions (3) English / Hebrew / Russian speakers (7) Inability to understand the questions presented in the Savion software program, or inability to communicate coherently as required for the performance of reminiscence therapy. (4) Have close relatives who could act as informants Due to the diverse symptoms of MCI and dementia, and in order to maintain a certain level of homogeneity, the age criterion (1) was determined in order to exclude cases of early onset dementia. In order to encourage the inclusion of subjects with an organic etiology for their cognitive impairment, participants with psychiatric disease (5) were excluded from the study. The language criterion (3) was based on the availability of these interfaces in the two computer systems. Due to the requirements of the screening tools, crucial information regarding the functional capabilities of the participants were to be obtained from a family informant (4). Moreover, the periodic evaluations included the impressions of family members who serve as the participants main caregivers. Each competent participant, as confirmed by an independent geriatrician, was asked to provide written informed consent prior to participation in the study. For those patients who were not competent, the legal guardian was required to provide informed consent. Subjects without a legal guardian who were determined not to be competent were not enrolled in the study. After providing informed consent, the participants medical files were reviewed in order to ensure that they conform with inclusion and exclusion criteria, and that their cognitive impairment was not the result of an associated medical condition (such as stroke, vitamin deficiencies, impaired thyroid function, among others). In addition, the participants underwent a preliminary assessment in order to determine the stage of their illness. The assessment included cognitive and functional evaluations using the following instruments: Mini-Mental State Examination for cognitive screening (Folstein et al., 1975). Clock Drawing test (Freedman et al., 1994) and CogSym questionnaire for cognitive screening (Memory Clinic, Mental Health Center, Beersheva). The latter is a numerical scale based on 10 questions used for elucidating cognitive symptoms, and is completed both by subjects and by informants. Lawton and Brody’s Instrumental Activities of Daily Living (IADL) for assessing functional capabilities (Lawton et al., 1969). This questionnaire is directed at the participants informant. Clinical Dementia Rating (CDR) scale as a global measure rating the severity of dementia (Morris, 1993). This questionnaire includes two parts: the first is directed at the informant and the second at the participant, comparing the latters response to that of the informant. Short version (15 questions) of the Geriatric Depression Scale (GDS) as a screening instrument for depression (Yesavage et al., 1983). All questionnaires directed to informants were administered by face-to-face or telephone interviews with first-degree relatives of the participants. All other scales were administered by face-to-face interviews with the participants during morning hours at the adult daycare centers. At the end of the screening process, the results of all evaluations were reviewed by a physician specializing in the treatment of cognitive syndromes, and the cognitive diagnosis was determined to be either MCI or dementia based on accepted criteria. 2.2 Design At the completion of screening, subjects were assigned randomly to one of three groups: Personal reminiscence therapy intervention (using the computerized reminiscence system with personal contents for each participant). Cognitive training intervention (using the Savion computerized cognitive training system). Control group which continued usual activities in the adult daycare center. The usual activities of all participants at the daycare centers and at their homes were not controlled. The purpose of randomization was to assure as much as possible that baseline characteristics of the participants of the three groups were similar. Randomization was stratified according to the daycare center, and to the severity of cognitive impairment (with CDR scores of 0.5 and 1 representing a milder degree of cognitive impairment, and CDR scores of 2 and 3 representing more severe impairment), see Figure 5. Figure 5. Randomization of participants in each day care center 2.3 Procedure Both those participants receiving reminiscence therapy as well as those using the cognitive training program participated in two sessions a week, each of 30-minutes duration, over a period of three months. The treatments were conducted in a quiet room at the adult daycare centers in the morning hours, and supervised by a trained mediator. At the end of each session, the mediator provided a short description of the interaction, relating to the course of the session and to special occurrences. 2.4 Measurements The following describes the measurements that were employed in the study. All assessments were performed at baseline (T0), at one month (T1) and at 3 months (T3). Responses from subjects relatives were obtained by face-to-face or telephone interviews. The name of the subjects relatives was provided by the staff of the adult day-care centers. 2.4.1 Cognitive function assessment In order to evaluate the efficacy of each of the interventions as compared to controls with regard to cognitive function, the subjects’ cognitive function was measured by the Mindstreams computerized assessment battery (Dwolatzky et al., 2003; Dwolatzky et al., 2010). The Moderate-Severe Impairment Battery was administered. This tool takes about 20 minutes to administer and tests the following cognitive domains: Orientation to time and place Language skills Memory Nonverbal memory Delayed nonverbal memory Executive function Similarities and judgment Reality testing Go-NoGo basic test Spatial orientation At the end of the test, data is uploaded to a server, scores are provided for all of the individual test components, and in addition a global score index is calculated for the test. A summary score for each domain (including the global score) reflects the level of accuracy, ranging between 0-100 (with 100 being the highest level of accuracy). 2.4.2 Patients’ psychological/ behavioral well-being Behavioral outcomes were assessed using the NPI Neuropsychiatric Inventory (Cummings et al., 1994), which was completed by the subjects first-degree relative. This tool includes 12 areas, each relating to the presence of a particular behavior, its frequency, severity and the level of caregiver distress. A total score is calculated according to the frequency and severity, and ranges between 0-144 (a higher score reflecting a higher level of symptomatology). Psychological well-being was assessed using the QoL-AD instrument (Logsdon et al., 1999), and a general question from the Will to Live questionnaire was administered (Carmel, 2007). The QoL-AD instrument obtains responses regarding the subjects quality of life both from the subject and the relative, and includes 13 items rated on a four-point scale. Total score of the instrument ranges between 13-52 (a higher score reflecting better quality of life). The Will to Live questionnaire was rated by the subject, and ranges between 0-5 ( a higher score reflecting a greater will to live). The Will to Live was measured by the question: If you could describe your will-to-live on a scale from 0-5, would you say that it is: 5=very strong, 4=strong, 3=intermediate, 2=weak, 1=very weak, and 0=no will to live?. The Will to Live is associated with the psychosocial indicators of well being rather than with the respondents health status (Carmel, 2001). 2.4.3 Caregiver burden For the assessment of caregiver burden and psychological morbidity, the short version of the Zarit Caregiver Burden Interview (Bedard et al., 2001) was used. This questionnaire was administered to the subjects first-degree relatives, and ranges between 0-48 (a higher score reflecting a higher level of burden).