A web-based psychoeducational program for informal caregivers of patients with Alzheimer's disease: a pilot randomized controlled trial.

BACKGROUND: Although several face-to-face programs are dedicated to informal caregivers of persons with dementia, they are not always accessible to overburdened or isolated caregivers. Based on a face-to-face intervention program, we adapted and designed a Web-based fully automated psychoeducational program (called Diapason) inspired by a cognitive approach. OBJECTIVE: This study aimed to evaluate through a pilot unblinded randomized controlled trial the efficacy and acceptability of a Web-based psychoeducational program for informal caregivers of persons with Alzheimer's disease (PWAD) based on a mixed methods research design. METHODS: We recruited and randomized offline 49 informal caregivers of a PWAD in a day care center in Paris, France. They either received the Web-based intervention and usual care for 3 months (experimental group, n=25) or only usual care (control group, n=24). Caregivers' perceived stress (PSS-14, primary outcome), self-efficacy, burden, perceived health status, and depression (secondary outcomes) were measured during 3 face-to-face on-site visits: at baseline, at the end of the program (month 3), and after follow-up (month 6). Additionally, semistructured interviews were conducted with experimental group caregivers at month 6 and examined with thematic analysis. RESULTS: Intention-to-treat analysis did not show significant differences in self-perceived stress between the experimental and control groups (P=.98). The experimental group significantly improved their knowledge of the illness (d=.79, P=.008) from baseline to month 3. Of the 25 participants allocated to the experimental group, 17 (71%) finished the protocol and entirely viewed at least 10 of 12 online sessions. On average, participants used the website 19.72 times (SD 12.88) and were connected for 262.20 minutes (SD 270.74). The results of the satisfaction questionnaire showed that most participants considered the program to be useful (95%, 19/20), clear (100%, 20/20), and comprehensive (85%, 17/20). Significant correlations were found between relationship and caregivers' program opinion (P=.01). Thus, positive opinions were provided by husbands and sons (3/3), whereas qualified opinions were primarily reported by daughters (8/11). Female spouses expressed negative (2/3) or neutral opinions (1/3). Caregivers expected more dynamic content and further interaction with staff and peers. CONCLUSIONS: In this study, quantitative results were inconclusive owing to small sample size. Qualitative results indicated/showed little acceptance of the program and high expectations from caregivers. Caregivers did not rule out their interest in this kind of intervention provided that it met their needs. More dynamic, personalized, and social interventions are desirable. Our recruitment issues pointed out the necessity of in-depth studies about caregivers' help-seeking behaviors and readiness factors. TRIAL REGISTRATION: Clinicaltrials.gov NCT01430286; http://clinicaltrials.gov/ct2/show/NCT01430286 (Archived by WebCite at http://www.webcitation/6KxHaRspL).

Validating the Revised Scale for Caregiving Self-Efficacy: A Cross-National Review.

BACKGROUND AND OBJECTIVES: This article reviews an instrument used in cross-national research with dementia family caregivers-the Revised Scale for Caregiving Self-Efficacy (RSCSE). Although the RSCSE has been translated into multiple languages, few studies have examined scale performance across samples. We examine congruence of psychometric, reliability, and validity data to inform research and practice. METHODS: We conducted citation searches using Scopus, Google Scholar, Web of Science, and PsycINFO. Identified dementia caregiving studies cited the original RSCSE article and described results of English and/or non-English translations of the scale. RESULTS: Peer-reviewed published studies (N = 58) of dementia family caregivers included data for Arabic, Chinese, English, French, Italian, and Spanish translations of the RSCSE; the majority (72%) reported use of non-English translations. Studies utilizing confirmatory factor analytic approaches reported findings consistent with the original development study. Internal consistency, convergent/discriminant validity, and criterion validity indices were congruent across diverse cross-national caregiving samples assessed with different translations. Data supported the RSCSE's sensitivity to change following specific psychosocial caregiving interventions. DISCUSSION: The reliability and validity of different translations of the RSCSE support continued use with cross-national samples of dementia family caregivers. Limitations of the scale point to the need for further self-efficacy measurement development within caregiving domains. Consistent with Bandura's discussion of social cognitive theory in cultural contexts, personal agency for caregiving challenges remains generalizable to cross-national populations. This review discusses the implications for cross-cultural research and practice.

Improving well-being in patients with major neurodegenerative disorders: differential efficacy of brief social robot-based intervention for 3 neuropsychiatric profiles.

BACKGROUND: Behavioral and psychological symptoms of dementia (BPSD) affect patients' daily life and subjective well-being. International recommendations stress nonpharmacological interventions as first-line treatment. While newer psychosocial initiatives adapted to geriatric populations based on social robot therapy have emerged, to our knowledge, no studies on differential efficacy depending on BPSD profiles have been conducted yet. OBJECTIVES: This pilot study examined the impact of short exposure to a social robot (Paro®) on the subjective emotional well-being of patients with major neurocognitive disorder as well as its impact on differential effects for 3 BPSD profiles. METHODS: Seventeen patients with major NCD with apathy (n=6), depression (n=7), and agitation (n=4) were recruited. The intervention was composed of four 15-minute individual sessions. Exposure occurred without the simultaneous presence of a health care provider. A pre-post assessment of emotional well-being was conducted with the International Positive and Negative Affect Schedule Short-Form, which measures positive and negative affectivity. RESULTS: Overall findings showed a significant increase of positive affectivity (p=0.02). Subgroup analysis demonstrated that agitated patients reduced negative affectivity significantly more than depressed patients (p=0.03). Results also confirmed users' overall acceptability of the robot. CONCLUSION: These findings support the usefulness of brief interactive sessions with the Paro robot for elderly patients with major NCD. These preliminary results encourage further research focused on brief interventions using social robotics, as well as on their specific benefits depending on the behavioral typology of patients with neurocognitive disorders.

Computerized cognitive stimulation and engagement programs in older adults with mild cognitive impairment: comparing feasibility, acceptability, and cognitive and psychosocial effects.

PURPOSE: Mild cognitive impairment (MCI) is associated with a higher risk of dementia and is becoming a topic of interest for pharmacological and nonpharmacological interventions. With advances in technology, computer-based cognitive exercises are increasingly integrated into traditional cognitive interventions, such as cognitive training. Another type of cognitive intervention involving technology use is cognitive engagement, consisting of involving participants in highly motivational and mentally challenging activities, such as learning to use a form of new digital technology. This study examined the feasibility and acceptability of a computerized cognitive stimulation (CCS) program and a computerized cognitive engagement (CCE) program, and then compared their effects in older adults with MCI. PATIENTS AND METHODS: In this randomized study, data from 19 MCI patients were analyzed (n=9 in CCS and n=10 in CCE). The patients attended a group weekly session for a duration of 3 months. Assessments of cognitive and psychosocial variables were conducted at baseline (M0) and at the end of the programs (M3). RESULTS: All of the participants attended the 12 sessions and showed a high level of motivation. Attrition rate was very low (one dropout at M3 assessment). At M3, the CCS participants displayed a significant improvement in part B of the Trail Making Test (TMT-B; p=0.03) and self-esteem (p=0.005), while the CCE participants showed a significant improvement in part A of the Trail Making Test (TMT-A; p=0.007) and a higher level of technology acceptance (p=0.006). The two groups did not differ significantly (p>0.05) in cognitive and psychosocial changes after the intervention. However, medium effect sizes (Cohen's d=0.56; 95% CI =-0.43:1.55) were found on the free recall, favoring the CCS group, as well as on TMT-A (d=0.51; 95% CI =-0.48:1.49) and technology acceptance (d=-0.65; 95% CI =-1.64:0.34), favoring the CCE group. CONCLUSION: Both interventions were highly feasible and acceptable and allowed improvement in different aspects of cognitive and psychosocial functioning in MCI subjects.

The Attitudes and Perceptions of Older Adults With Mild Cognitive Impairment Toward an Assistive Robot.

The purpose of this study was to explore perceived difficulties and needs of older adults with mild cognitive impairment (MCI) and their attitudes toward an assistive robot to develop appropriate robot functionalities. Twenty subjects were recruited to participate in either a focus group or an interview. Findings revealed that although participants reported difficulties in managing some of their daily activities, they did not see themselves as needing assistance. Indeed, they considered that they were capable of coping with difficulties with some compensatory strategies. They therefore declared that they did not need or want a robot for the moment but that they considered it potentially useful either for themselves in the future or for other older adults suffering from frailty, loneliness, and disability. Factors underlying unwillingness to adopt an assistive robot were discussed. These issues should be carefully addressed in the design and diffusion processes of an assistive robot.

Age-Related Evolution Patterns in Online Handwriting.

Characterizing age from handwriting (HW) has important applications, as it is key to distinguishing normal HW evolution with age from abnormal HW change, potentially triggered by neurodegenerative decline. We propose, in this work, an original approach for online HW style characterization based on a two-level clustering scheme. The first level generates writer-independent word clusters from raw spatial-dynamic HW information. At the second level, each writer's words are converted into a Bag of Prototype Words that is augmented by an interword stability measure. This two-level HW style representation is input to an unsupervised learning technique, aiming at uncovering HW style categories and their correlation with age. To assess the effectiveness of our approach, we propose information theoretic measures to quantify the gain on age information from each clustering layer. We have carried out extensive experiments on a large public online HW database, augmented by HW samples acquired at Broca Hospital in Paris from people mostly between 60 and 85 years old. Unlike previous works claiming that there is only one pattern of HW change with age, our study reveals three major aging HW styles, one specific to aged people and the two others shared by other age groups.

A web-based program for informal caregivers of persons with Alzheimer's disease: an iterative user-centered design.

BACKGROUND: Web-based programs have been developed for informal caregivers of people with Alzheimer's disease (PWAD). However, these programs can prove difficult to adopt, especially for older people, who are less familiar with the Internet than other populations. Despite the fundamental role of usability testing in promoting caregivers' correct use and adoption of these programs, to our knowledge, this is the first study describing this process before evaluating a program for caregivers of PWAD in a randomized clinical trial. OBJECTIVE: The objective of the study was to describe the development process of a fully automated Web-based program for caregivers of PWAD, aiming to reduce caregivers' stress, and based on the user-centered design approach. METHODS: There were 49 participants (12 health care professionals, 6 caregivers, and 31 healthy older adults) that were involved in a double iterative design allowing for the adaptation of program content and for the enhancement of website usability. This process included three component parts: (1) project team workshops, (2) a proof of concept, and (3) two usability tests. The usability tests were based on a mixed methodology using behavioral analysis, semistructured interviews, and a usability questionnaire. RESULTS: The user-centered design approach provided valuable guidelines to adapt the content and design of the program, and to improve website usability. The professionals, caregivers (mainly spouses), and older adults considered that our project met the needs of isolated caregivers. Participants underlined that contact between caregivers would be desirable. During usability observations, the mistakes of users were also due to ergonomics issues from Internet browsers and computer interfaces. Moreover, negative self-stereotyping was evidenced, when comparing interviews and results of behavioral analysis. CONCLUSIONS: Face-to-face psycho-educational programs may be used as a basis for Web-based programs. Nevertheless, a user-centered design approach involving targeted users (or their representatives) remains crucial for their correct use and adoption. For future user-centered design studies, we recommend to involve end-users from preconception stages, using a mixed research method in usability evaluations, and implementing pilot studies to evaluate acceptability and feasibility of programs.

Evaluating the efficacy of a web-based program (diapason) for informal caregivers of patients with Alzheimer's disease: protocol for a randomized clinical trial.

BACKGROUND: Informal caregivers (CGs) of patients with Alzheimer's disease are at risk of suffering from psychological and physical weakening. Several psychoeducational interventions have been designed to prevent stress and burden of caregivers. In France, despite health authorities' recommendations, to our knowledge there is no rigorously assessed Web-based psychoeducational program to date. OBJECTIVE: The objective of our study was to assess the efficacy of a French Web-based psychoeducational program (called Diapason) with an unblinded randomized clinical trial. METHODS: In this protocol, 80 informal caregivers of patients followed at Broca Hospital are recruited offline and randomized in the experimental condition (EC) or the control condition (CC). The volunteers in EC have to visit a closed online user group at least once a week and validate one new session of this fully automated Web program, during 12 weeks. Each week a new thematic is added to the website. The participants in the CC receive usual care, and have access to the Diapason program after their participation (6 months). Face-to-face evaluations for both groups are planned every 3 months (M0-M3 and M6). The main objective of this program is to provide CGs with information on the disease process, how to prevent psychological strain (using anticipation and relaxation techniques), and offering a virtual space (forum) to discuss with other caregivers. The primary outcome of this study is the self-perceived stress, while self-efficacy, burden, depression, and self-perceived health status are defined as secondary outcomes. Other variables that might have an impact on the program efficacy are collected. RESULTS: This protocol was accepted for funding. The enrollment began in October 2011, and participants currently recruited will finish their evaluations in January 2014. The results are expected for June 2014. CONCLUSIONS: Findings might provide empirical evidence on: (1) the feasibility of an Internet-based program in the French context, (2) the effectiveness of a Web-based program for informal caregivers, and (3) the identification of caregivers who will benefit from this type of intervention. TRIAL REGISTRATION: Clinicaltrials.gov NCT01430286; http://clinicaltrials.gov/ct2/show/NCT01430286 (Archived by WebCite at http://www.webcitation/6KxHaRspL).

[Support for patients with Alzheimer's disease and their caregivers by gerontechnology]. / L'aide aux personnes souffrant de maladie d'Alzheimer et à leurs aidants par les gérontechnologies.

The increasing number of people suffering from Alzheimer's disease raises the question of their caring at home, especially when the disease causes disability and negative consequences in daily life such as isolation, falls, wandering, errors in drug taking. Furthermore, caregivers bear a substantial burden that can have adverse effects on their physical and mental health. New technologies of information could play an additional role as care providers without substituting family or professional caregivers help. A review of literature focused on the different technological solutions conceived for patients suffering from Alzheimer's disease and their carers shows that these appliances could help to provide reminders in daily life (drugs, tasks and appointments, meals cooking), to activate residual cognitive resources by computerized cognitive stimulation intervention, to reduce stress, anxiety and depressive symptoms in patients by visual contact with families and professionals (webconference), to contribute to patients safety by detecting falls and wandering, and to help families in the caring of patients with computerized information and counselling interventions. We also discuss the current limitations for a widespread use of these technologies and outline future research avenues. True needs of end-users are still poorly known and should be more clearly defined. Simplicity of the use of these appliances should be further improved. Demonstration of medical and social benefits for elderly people should be carried out in randomized, controlled studies. Ethical reflexion should be developed in conjunction with the use of these gerontechnologies. Finally, the economical model which would enable the providing of these appliances to the largest number of patients and caregivers should be implemented. Although these gerontechnologies are promising, research is still needed to tailor them properly to the needs of end-users, assess their benefit in ecological context of people with Alzheimer's disease in order to provide them with appropriate tools in daily life.