A Web-Based Psychoeducational Program for Informal Caregivers of Patients With Alzheimer’s Disease: A Pilot Randomized Controlled Trial

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Abstract

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).

Related collections

Most cited references 39

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2013 Alzheimer's disease facts and figures.

(2013)

This report provides information to increase understanding of the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality rates, health expenditures and costs of care, and effect on caregivers and society in general. It also explores the roles and unique challenges of long-distance caregivers, as well as interventions that target those challenges. An estimated 5.2 million Americans have AD. Approximately 200,000 people younger than 65 years with AD comprise the younger onset AD population; 5 million comprise the older onset AD population. Throughout the coming decades, the baby boom generation is projected to add about 10 million to the total number of people in the United States with AD. Today, someone in America develops AD every 68 seconds. By 2050, one new case of AD is expected to develop every 33 seconds, or nearly a million new cases per year, and the total estimated prevalence is expected to be 13.8 million. AD is the sixth leading cause of death in the United States and the fifth leading cause of death in Americans age 65 years or older. Between 2000 and 2010, the proportion of deaths resulting from heart disease, stroke, and prostate cancer decreased 16%, 23%, and 8%, respectively, whereas the proportion resulting from AD increased 68%. The number of deaths from AD as determined by official death certificates (83,494 in 2010) likely underrepresents the number of AD-related deaths in the United States. A projected 450,000 older Americans with AD will die in 2013, and a large proportion will die as a result of complications of AD. In 2012, more than 15 million family members and other unpaid caregivers provided an estimated 17.5 billion hours of care to people with AD and other dementias, a contribution valued at more than $216 billion. Medicare payments for services to beneficiaries age 65 years and older with AD and other dementias are three times as great as payments for beneficiaries without these conditions, and Medicaid payments are 19 times as great. Total payments in 2013 for health care, long-term care, and hospice services for people age 65 years and older with dementia are expected to be $203 billion (not including the contributions of unpaid caregivers). An estimated 2.3 million caregivers of people with AD and other dementias live at least 1 hour away from the care recipient. These "long-distance caregivers" face unique challenges, including difficulty in assessing the care recipient's true health condition and needs, high rates of family disagreement regarding caregiving decisions, and high out-of-pocket expenses for costs related to caregiving. Out-of-pocket costs for long-distance caregivers are almost twice as high as for local caregivers. Copyright © 2013. Published by Elsevier Inc.

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Use of qualitative methods alongside randomised controlled trials of complex healthcare interventions: methodological study

Simon Lewin, Claire Glenton, Andrew D Oxman (2009)

Objective To examine the use of qualitative approaches alongside randomised trials of complex healthcare interventions. Design Review of randomised controlled trials of interventions to change professional practice or the organisation of care. Data sources Systematic sample of 100 trials published in English from the register of the Cochrane Effective Practice and Organisation of Care Review Group. Methods Published and unpublished qualitative studies linked to the randomised controlled trials were identified through database searches and contact with authors. Data were extracted from each study by two reviewers using a standard form. We extracted data describing the randomised controlled trials and qualitative studies, the quality of these studies, and how, if at all, the qualitative and quantitative findings were combined. A narrative synthesis of the findings was done. Results 30 of the 100 trials had associated qualitative work and 19 of these were published studies. 14 qualitative studies were done before the trial, nine during the trial, and four after the trial. 13 studies reported an explicit theoretical basis and 11 specified their methodological approach. Approaches to sampling and data analysis were poorly described. For most cases (n=20) we found no indication of integration of qualitative and quantitative findings at the level of either analysis or interpretation. The quality of the qualitative studies was highly variable. Conclusions Qualitative studies alongside randomised controlled trials remain uncommon, even where relatively complex interventions are being evaluated. Most of the qualitative studies were carried out before or during the trials with few studies used to explain trial results. The findings of the qualitative studies seemed to be poorly integrated with those of the trials and often had major methodological shortcomings.

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The case for positive emotions in the stress process.

Susan Folkman (2008)

For many decades, the stress process was described primarily in terms of negative emotions. However, robust evidence that positive emotions co-occurred with negative emotions during intensely stressful situations suggested the need to consider the possible roles of positive emotions in the stress process. About 10 years ago, these possibilities were incorporated into a revision of stress and coping theory (Folkman, 1997). This article summarizes the research reported during the intervening 10 years that pertains to the revised model. Evidence has accumulated regarding the co-occurrence of positive and negative emotions during stressful periods; the restorative function of positive emotions with respect to physiological, psychological, and social coping resources; and the kinds of coping processes that generate positive emotions including benefit finding and reminding, adaptive goal processes, reordering priorities, and infusing ordinary events with positive meaning. Overall, the evidence supports the propositions set forth in the revised model. Contrary to earlier tendencies to dismiss positive emotions, the evidence indicates they have important functions in the stress process and are related to coping processes that are distinct from those that regulate distress. Including positive emotions in future studies will help address an imbalance between research and clinical practice due to decades of nearly exclusive concern with the negative emotions.

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Author and article information

Contributors

Victoria Cristancho-Lacroix:

Assistance Publique - Hôpitaux de ParisDepartment of GerontologyHôpital Broca54-56 rue PascalParis, 75013France33 3314408335133 0144083510victoria.cristancho@gmail.com

ORCID: http://orcid.org/0000-0002-3441-7352

Journal

Journal ID (nlm-ta): J Med Internet Res

Journal ID (iso-abbrev): J. Med. Internet Res

Journal ID (publisher-id): JMIR

Title: Journal of Medical Internet Research

Publisher: JMIR Publications Inc. (Toronto, Canada )

ISSN (Print): 1439-4456

ISSN (Electronic): 1438-8871

Publication date Collection: May 2015

Publication date (Electronic): 12 May 2015

Volume: 17

Issue: 5

Electronic Location Identifier: e117

Affiliations

[1] ¹Assistance Publique - Hôpitaux de Paris Department of Gerontology Hôpital Broca ParisFrance

[2] ²EA 4468. Maladie d'Alzheimer, facteurs de risques, soins et accompagnement des patients et des familles Université Paris Descartes ParisFrance

[3] ³Assistance Publique - Hôpitaux de Paris Department of Biostatistics and Epidemiology Hôpital Hôtel-Dieu ParisFrance

[4] ⁴Institut national de la santé et de la recherche médicale Unité Mixte de Recherche-S0669 Université Paris-Sud and Université Paris Descartes ParisFrance

[5] ⁵Research Unit on Children’s Psychosocial Maladjustment University of Montreal Montréal, QCCanada

Author notes

Corresponding Author: Victoria Cristancho-Lacroix victoria.cristancho@ 123456gmail.com

Author information

Victoria Cristancho-Lacroix http://orcid.org/0000-0002-3441-7352

Jérémy Wrobel http://orcid.org/0000-0003-1261-7350

Inge Cantegreil-Kallen http://orcid.org/0000-0002-8557-4737

Timothée Dub http://orcid.org/0000-0002-1819-518X

Alexandra Rouquette http://orcid.org/0000-0002-2473-1719

Anne-Sophie Rigaud http://orcid.org/0000-0002-6827-4417

Article

Publisher ID: v17i5e117

DOI: 10.2196/jmir.3717

PMC ID: 4468784

PubMed ID: 25967983

SO-VID: 76aefb60-ca14-4e07-b0b2-4343a212b350

Copyright © ©Victoria Cristancho-Lacroix, Jérémy Wrobel, Inge Cantegreil-Kallen, Timothée Dub, Alexandra Rouquette, Anne-Sophie Rigaud. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 12.05.2015.

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

History

Date received : 31 July 2014

Date revision requested : 18 September 2014

Date revision received : 24 October 2014

Date accepted : 23 November 2014

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