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).

Fear of Alzheimer's disease in the French population: impact of age and proximity to the disease.

BACKGROUND: The negative image of Alzheimer's disease (AD) in our society has a substantial impact on treating, caring for and integrating those suffering from the disease and their relatives. Little research has been conducted on social perception of AD in the community. METHODS: The aim of this study was to investigate the perception, knowledge, opinions and beliefs about AD in the French population. A cross-sectional telephone survey of 2013 randomly selected community-dwelling people aged 18 years and over was conducted. Multivariate logistic regressions were used for identifying predictors of the personal fear of developing AD, both for the global sample and for different age groups. RESULTS: Sixty percent of the sample reported personal fear of developing AD. This attitude was strongly related to age, becoming predominant among the elderly. In the middle-aged group, personal fear of developing AD was highest in women with poor self-perceived health and, in particular, those who cared for someone with AD. Being a caregiver or knowing someone with the disease was also strongly associated with fear among younger adults aged 18-34. CONCLUSIONS: These results serve as an incentive for developing special education and prevention programs focused on different age groups and caregivers of AD.

[Systemic family therapy in the context of Alzheimer's disease: a theoretical and practical approach]. / La thérapie familiale systémique dans le cadre de la maladie d'Alzheimer: approche théorique et pratique.

Alzheimer's disease has a negative impact on family relationships and may trigger conflicts between the main caregiver and other family members. The systemic approach evidences the impact of dementia on structural and functional characteristics of the family system. Systemic family therapy is especially indicated in crisis situations such as emergency hospitalization or institutionalization of the patient, and when the family members do not agree on when and how to introduce care and support services at the patient's home. In this case, the aim of the intervention is to restore the communication between all the family members in order to find an agreement for the best management of the patients. Since September 2006, systemic family therapy has been offered in the memory clinic of the Broca Hospital to families having a member suffering from Alzheimer's disease. The involvement of the families was accomplished by the direct participation of the patient, main caregiver (spouse), grown-up children and grandchildren. The aim was to obtain an agreement for the access of support and care services at home from all the family members. The intervention was based on a step-by-step procedure and comprehended five sessions. The primary results of a pilot study are presented.

Management of acute pain in dementia: a feasibility study of a robot-assisted intervention.

Background: The management of pain is particularly challenging in patients with moderate to severe dementia owing to the loss of communication ability or underlying causes such as behavioral symptoms. It is often associated with health care professionals' frustration and feeling of helplessness. The present study determined a framework and examined the feasibility of an innovative intervention using the PARO® robot for the management of acute pain in dementia. Method: A mixed-methods research design combining qualitative (five focus groups) and quantitative (questionnaire survey) approaches was used to define the intervention framework. We recruited 57 health care professionals from various medical and paramedical specialties (eg, nursing auxiliaries, nurses, physicians, psychologists) and with expertise in gerontology. The feasibility of the intervention was subsequently assessed with 12 patients suffering from dementia in painful situations to validate the procedure. Results: Four main issues have been addressed: 1) the identification of a core group of painful situations associated with care (washing, dressing/change, transfer/mobilization), currently considered as inefficiently managed; 2) the selection of an appropriate assessment methodology including criteria and tools for pain evaluation; 3) the definition of health professionals' training needs and organizational requirements for their implementation; and 4) the perceived usefulness of a robot-assisted intervention for the management of pain in dementia in daily practice. The feasibility study showed that the predefined intervention framework was applicable and acceptable for the majority of professionals and patients. Conclusion: A consistent and feasible intervention framework for the management of painful situations associated with care in dementia using the PARO robot was defined. Understanding of professionals' needs, opinions and perceived obstacles regarding the intervention was a useful step in the preparation of the forthcoming clinical trial.

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.

Disclosure of diagnosis of Alzheimer's disease in French general practice.

Most practitioners find disclosing the diagnosis of Alzheimer s disease (AD) to an individual with dementia very difficult. Literature results show a wide variability in attitudes and clinicalpractice, and diagnosis seems to be more often disclosed to caregivers than to patients. The objective of this study was to examine whether and how diagnosis of AD is disclosed in French general practice and which issues are addressed with the patient. A questionnaire was sent via mail to 1,629 general practitioners (GPs), 1,105 belonging to the Sentinel's network and 524 specially recruited doctors practicing in the Rhône-Alpes region. A total of 631 questionnaires were returned (response rate, 39 percent), of which 616 were eligible for analysis. Twenty-eight percent of GPs reported having disclosed diagnosis to the patient (25 percent mentioned "Alzheimer's disease"), whereas 88 percent considered it their role to announce the diagnosis to the patient. Regarding the type of information provided to the patient, only 25 percent discussed the nature of the illness, 23 percent behavioral problems, and 47 percent depression, mainly for psychological reasons (63 percent). Stress was discussed with 79 percent of the caregivers. We concluded that GPs do not discuss the consquences of AD and symptoms (e.g., behavioral disorders) with patients, mainly for psychological reasons, whereas they have a less-reluctant attitude toward caregivers. As the GP has the weighty task of providing ropriate community care and psychological support to the patient, it is of utmost importance to reflect on how disclosure of diagnosis can be facilitated.

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.

Psychotropic drug use among older people in general practice: discrepancies between opinion and practice.

BACKGROUND: The use of psychotropic drugs has increased over recent years in France. GPs are the first prescribers, especially for older patients. AIM: To analyse discrepancies between GPs' opinions and practice when prescribing psychotropic drugs to older patients. SETTING: Postal surveys sent to GPs all over mainland France. DESIGN OF STUDY: Cross-sectional postal study. METHOD: A questionnaire collected data on characteristics of GPs' practices, their opinions about psychotropic drug consumption in older people, and a full description of their last older patient receiving a psychotropic drug and seen last by the GP on that particular day. RESULTS: A total of 350 participating GPs saw 2498 patients aged > or =65 years. Among these patients, the prevalence of psychotropic use was 32.1% (803/2498) for anxiolytics/hypnotics, and 17.5% for antidepressants (438/2498). A total of 91% of GPs agreed that it was possible to reduce or stop psychotropic drugs for these patients. Characteristics of 339 patients taking psychotropic drug were reported: 85.8% (291/339) received at least one anxiolytic/hypnotic and 56.9% (193/339) received at least one antidepressant; there were prescribed for more than 1 year in 68.4% (199/291) and 43.5% (84/193) of the cases respectively. GPs stated that it was possible to reduce or stop anxiolytic/hypnotic drugs for only 27% (79/291) of these patients. Barriers to doing this were patients' refusal (79%), and the absence of any local offer of psychotherapy (73%) or alternative therapy (70%). CONCLUSION: A mismatch exists between GPs' intent (91%) and practice (27%) regarding reduction of psychotropic prescription in individuals aged > or =65 years. The barriers encountered should be examined further to help physicians improve management of psychotropic prescription.

Cognitive stimulation intervention for elders with mild cognitive impairment compared with normal aged subjects: preliminary results.

BACKGROUND AND AIMS: Cognitive training programs have been developed for Alzheimer's disease patients and the healthy elderly population. Collective cognitive stimulation programs have been shown to be efficient for subjects with memory complaint. The aim of this study was to evaluate the benefit of such cognitive programs in populations with Mild Cognitive Impairment (MCI). METHODS: Twelve patients with MCI and twelve cognitively normal elders were administered a cognitive stimulation program. Cognitive performance (Logical Memory, Word paired associative learning task, Trail Making Test, verbal fluency test) were collected before and after the intervention. A gain score [(post-score - pre-score)/ pre-score] was calculated for each variable and compared between groups. RESULTS: The analysis revealed a larger intervention size effect in MCI than in normal elders' performances on the associative learning task (immediate recall: p<0.05, delayed recall: p<0.01). The intervention was more beneficial in improving associative memory abilities in MCI than in normal subjects. At the end of the intervention, the MCI group had lower results than the normal group only for the delayed recall of Logical Memory. CONCLUSIONS: Although further studies are needed for more details on the impact of cognitive stimulation programs on MCI patients, this intervention is effective in compensating associative memory difficulties of these patients. Among non-pharmacological interventions, cognitive stimulation therapy is a repeatable and inexpensive collective method that can easily be provided to various populations with the aim of slowing down the rate of decline in elderly persons with cognitive impairment.