Accepted Manuscript
Evaluation of technology-based interventions for informal caregivers of patients with dementia – A meta-analysis of randomized controlled trials Friederike Deeken M.Sc. , Anna Rezo M.Sc. , Matthias Hinz M.Sc. , Robert Discher B.Sc. , Michael A. Rapp M.D., Ph.D. PII: DOI: Reference:
S1064-7481(18)30587-6 https://doi.org/10.1016/j.jagp.2018.12.003 AMGP 1141
To appear in:
The American Journal of Geriatric Psychiatry
Received date: Revised date: Accepted date:
27 June 2018 14 November 2018 3 December 2018
Please cite this article as: Friederike Deeken M.Sc. , Anna Rezo M.Sc. , Matthias Hinz M.Sc. , Robert Discher B.Sc. , Michael A. Rapp M.D., Ph.D. , Evaluation of technology-based interventions for informal caregivers of patients with dementia – A meta-analysis of randomized controlled trials, The American Journal of Geriatric Psychiatry (2018), doi: https://doi.org/10.1016/j.jagp.2018.12.003
This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT
Highlights
1) Effective and easily accessible interventions for caregivers of people with dementia (PWD)
CR IP T
are needed. The aim of this meta-analysis is to evaluate the efficacy of technology-based interventions for informal caregivers of PWD for the two outcome domains depression and burden.
2) Technology-based interventions show a small but significant effect on the outcomes
AN US
depression and burden in informal caregivers. The strongest effects were found for
interventions with a combination of telephone and computer or telephone and DVD/video. 3) Technology-based interventions have the potential to support caregivers of PWD. They are a
ED
M
promising alternative to traditional services.
Evaluation of technology-based interventions for informal caregivers of patients with dementia –
PT
A meta-analysis of randomized controlled trials
CE
Friederike Deeken1,2, M.Sc., Anna Rezo1,2, M.Sc., Matthias Hinz 1, M.Sc., Robert Discher1, B.Sc., Michael A. Rapp1, M.D., Ph.D. Social and Preventive Medicine, University of Potsdam, Potsdam, Germany
AC
1
2
National Graduate College “Optimization Strategies in Dementia”, Karl and Veronica Carstens-
Foundation, Essen, Germany
Corresponding author: Michael A. Rapp, MD, PhD 1
ACCEPTED MANUSCRIPT Social and Preventive Medicine University of Potsdam Am Neuen Palais 10 D-14469 Potsdam Germany
CR IP T
Phone: +49 331 977 4185 Fax: +49 331 977
AN US
Email:
[email protected]
Key words: caregiver, dementia, technology, meta-analysis Conflict of interest: M.A. Rapp received a honorarium from Dr. Willmar Schwabe GmbH & Co. KG for
M
scientific writing, and consultant fees from Lilly, Inc..
ED
Acknowledgments: This research work was funded by the Karl and Veronica Carstens-Foundation as
PT
part of the National Graduate Programme “Optimization strategies in Dementia – OptiDem”.
Disclosure: This work was performed in partial fulfillment of the requirements for obtaining the
AC
CE
degree “Dr. phil.” for author FD at the Faculty of Human Sciences of the University of Potsdam.
2
ACCEPTED MANUSCRIPT Abstract Objective: To estimate the efficacy of technology-based interventions for informal caregivers of people with dementia (PWD). Method: PubMed, PsycINFO, and Cochrane Library databases were searched with no restrictions in language or publication date in August 2018. Two independent reviewers identified 33 eligible
CR IP T
randomized controlled trials (RCTs) conducting a technology-based intervention for informal carers of PWD. Meta-analyses for the outcome measures caregiver depression and caregiver burden were conducted with subgroup-analyses according to mode of delivery (telephone, computer/web-based, combined interventions). To assess methodological quality, the Cochrane “risk of bias”-assessment
AN US
was rated.
Results: Meta-analyses revealed a small but significant post-intervention effect of technology-based interventions for caregiver depression as well as for caregiver burden. Combined interventions showed the strongest effects.
M
Conclusions: Technology-based interventions have the potential to support informal caregivers of
ED
PWD. Due to advantages such as high flexibility and availability, technology-based interventions provide a promising alternative in comparison with “traditional services”, e.g. for people living in
AC
CE
PT
rural areas. More high quality RCTs for specific caregiver groups are needed.
3
ACCEPTED MANUSCRIPT Introduction Relevance of the topic Beside the strong interest in interventions for people with dementia (PWD), treatments to maintain and improve the physical and mental health of caregivers of PWD have increasingly become a focus of attention.
CR IP T
Caregivers of PWD are confronted with multiple challenges. As the disease progresses, PWD may need help for most activities of daily living, and to be monitored by the caregiver to ensure his or her safety (1). This leads to high responsibility and less free time for the caregiver to take care of him- or herself. A meta-review (2) of systematic reviews focusing on stress, coping, and interventions in
AN US
dementia and dementia caregiving came to the conclusion that being a caregiver for a PWD is a risk factor for both psychological stress and poor physical health.
Depression and burden are the two most researched constructs in terms of caregiving outcomes and are widely used among studies on informal caregivers of PWD. According to Schulz et al. (3), these
M
outcomes are meaningful indicators of caregiver distress. Depression shows multiple associations
ED
with potential adverse consequences for caregivers such as functional decline or mortality (4). Many studies investigated the association between being a caregiver of a PWD and symptoms of
PT
depression and found an increased risk for caregivers (5). Sallim et al. (6) found an aggregate prevalence of 43.6% for depression among caregivers of people with Alzheimer's disease. The
CE
outcome burden is associated with lower perceived health in family caregivers (7) and an increased
AC
risk of institutionalization of the PWD (8). The number of families affected by dementia will continuously increase and therefore the need for support for family caregivers is crucial, also in order to reduce burden to the health system. Institutionalization of a PWD is the largest component when it comes to costs of caring (9). There is an urgent need for effective and easily accessible interventions for caregivers of PWD, caused by the growing number of PWD, the rising costs of care, and the difficulties caregivers of PWD are confronted with. 4
ACCEPTED MANUSCRIPT Advantages of technology-based interventions over traditional interventions The use of technology-based interventions, including computers, smartphones with app-based technologies, web-based interventions, and telephones (cell phones as well as landline), is a rapidly growing field, for both young and elderly people. A report from the Pew Research Center in 2014 showed that in 2012, for the first time more than half of the older adults (defined as 65 years and
CR IP T
older) in the survey were internet users and also the number of older adults using a cell phone was increasing to 77% (10). Besides using the internet for communication with friends and family,
entertainment or searching Internet web sites for information, a large part of the older internet users is searching for health and medical information online (11). Nevertheless, older adults are
AN US
more likely to use those technologies that have been accessible for a longer time, e.g. telephone (12).
There are several potential advantages of technology-based interventions. Compared to face-to-face delivery interventions, an advantage of technology-based interventions is that they are always
M
available and accessible, especially for people living in rural areas (13) or with limited access to
ED
“traditional services” like psychotherapy or self-help groups. In descriptive studies it was found that almost half of all caregivers living in rural communities do not receive assistance for reasons such as
PT
not being aware that specific programs exist or because services are too geographically distant to be helpful (14). Because of their flexibility, technology-based interventions have the potential to reach
CE
caregivers with limited temporal and financial resources who are especially prone to develop
AC
caregiver depression (15). In addition, technology-based interventions can combine different approaches such as psychoeducation, supportive approaches, and relaxation training in a costeffective way, which can be seen as an advantage given that multicomponent interventions have shown superior efficacy for the treatment of caregiver burden (16). Other advantages for computermediated communication are anonymity, the ability to personalize use, and the ease of connecting with other caregivers in similar situations (17). Previous reviews and meta-analyses 5
ACCEPTED MANUSCRIPT Up to now, several reviews have investigated the use of new technologies in caregiving contexts (e.g. (18, 19)). However, much of the research has been of qualitative nature and to our knowledge, there is no quantitative meta-analysis concerning this topic until now. A systematic review of the effect of telephone, internet, or combined support for carers of people living with Alzheimer's, vascular, or mixed dementia in the community from Jackson et al. (20) with 22 studies, including
CR IP T
randomized controlled trials, non-randomized controlled trials, quasi-experimental, and pre-post studies, highlighted that combined interventions yielded more positive outcomes than telephone or internet interventions alone.
The importance of the topic corresponds to the rising number of published articles dealing with
AN US
technology-based interventions for informal caregivers of PWD. A systematic review on computer and telephone delivered interventions for caregivers of PWD suggested that the number of publications increases by 13% each year (21). Aim of the article
M
The main object of this article was to conduct a meta-analysis to evaluate the efficacy of technology-
ED
based interventions for informal caregivers of PWD living in the community related to two outcome domains separately (depression and burden). Subgroup analyses were conducted separately for the
PT
type of intervention, namely computer/web-based interventions, telephone interventions, and the combination of telephone and computer or DVD. Given that older adults in this cohort may be less
CE
conversant with the use of computer and internet, and more familiar with telephone use, or benefit
AC
more from personal contacts as provided via telephone, we expected different effects of the various modalities with telephone interventions showing larger effect sizes than computer/web-based interventions.
Following findings that combined interventions provide more favorable outcomes for caregivers of PWD, we expected this subgroup to have the largest effect sizes. Moreover, we analyzed mean baseline depression scores of the caregivers to explore whether degree of depressivity has an influence on the effectiveness of the intervention. Baseline values of 6
ACCEPTED MANUSCRIPT the depression scores could potentially confound intervention effects, in that caregivers with higher depression scores at baseline could show larger treatment gains compared to caregivers with lower depression scores at baseline. In their review, Zarit and Femia (22) proposed a potential set of moderators which can influence the effectiveness of interventions for caregivers of PWD. One explanation for small intervention effects was that treatments could only be successful in reducing
CR IP T
symptoms (e.g. depression) in caregivers if they present with a sizeable symptom load in the first place. Therefore, we expected higher effect sizes in studies with higher mean depression baseline scores. Methods
AN US
Inclusion and exclusion criteria
Studies included in the meta-analysis had to meet the following criteria: (1) Randomized controlled trial as study design.
(2) Participants were informal, un-paid caregivers of a PWD living in their own home.
M
(3) The intervention had to be mainly directed to the caregiver; studies with an intervention
ED
solely aimed at the patient were excluded. (4) The intervention was technology-based, including web-based, telephone, DVD/video, and
PT
computer-mediated interventions. The intervention did not need to be exclusively technology-based but it should be the main part of the intervention.
CE
(5) The study had to use at least one quantitative measurement to estimate caregiver
AC
burden or depression. Studies examining the feasibility, user friendliness, or convenience of an intervention only were excluded. (6) Comparators could be usual care, a non-technology-based intervention, a second technology-based intervention, which was used as a comparison or any other type of control intervention. Search method
7
ACCEPTED MANUSCRIPT PRISMA [Preferred Reporting Items for Systematic Reviews and Meta-Analyses] guidelines were followed (23) and the study protocol was registered at the International Prospective Register of Systematic Review, PROSPERO, on the December 12, 2016 (Registration: CRD42017053959). For the systematic literature search, the databases PubMed and PsycINFO were used. The database Cochrane Library was added as a third database after protocol for cross validation. The last search
CR IP T
was conducted on August 7, 2018 (see document, SDC_1_Search Terms, where search terms are described in detail). As an additional search strategy, the reference lists of relevant articles were reviewed, including systematic reviews that we found. Study selection
AN US
One author (FD) conducted the title and abstract scan. Full-texts were then reviewed by two
independent authors to examine if the studies fulfilled inclusion criteria (FD and MH). Discrepancies between the two reviewers were discussed and a third reviewer (MR) was asked. If different articles were based on the same study just showing different aspects of the same intervention, they were
M
treated as one study. A preliminary narrative review of the data collected, detailing the selection
ED
process, has been submitted elsewhere (Deeken F, Rezo A, Hinz M, Discher R, Rapp MA: Evaluation von technologie-basierten Interventionen für pflegende Angehörige von Personen mit Demenz: Ein
PT
narratives Review, in Nicht-pharmakologische Präventions-, Therapie- und Versorgungsansätze bei Demenz – Ergebnisse der Übersichtsarbeiten des Graduiertenkollegs OptiDem. Edited by Gräßel E,
CE
Pendergrass A. Essen, KVC Verlag, submitted).
AC
Study characteristics
Study characteristics, such as participants, intervention, control group, and principal findings, were extracted from eligible studies (see Table 1).
- Please insert Table 1 here -
Risk of bias assessment 8
ACCEPTED MANUSCRIPT The risk of bias assessment was conducted by two independent reviewers (FD and RD) using the Cochrane Risk of Bias tool (24). In case of disagreements, a third author (MR) was consulted. Statistical analysis The first reviewer (FD) extracted the data from the studies needed for the RevMan 5.3 (25). If more than one follow-up occasion was available, we used the first time point after the intervention to
CR IP T
examine the direct effect of the intervention. A second reviewer (AR) verified the data. Data then were entered into Review Manager 5.3 for analysis. Where data was not reported or could not be calculated from given data, studies were described narratively.
Meta-analyses were performed using the computer software program Review Manager 5.3. Random
AN US
effects model was chosen to meet the expected heterogeneity due to differences in intervention, control group, and population (26). Effect sizes were calculated for standardized mean differences (SMD (Hedges` adjusted g) with 95% confidence intervals (CIs)) between intervention and control group due to the different measurements used across the trials. The standardized mean differences
M
were coded so that negative values meant a greater improvement in the treatment group than in
ED
the control group.
Analyses were performed separately for the two outcome domains (depression and burden) as well
PT
as for differences in the type of intervention (telephone, web-based/computer, or combined). In the main meta-analysis, active control group studies were preferred over passive control groups. To
CE
examine whether this effect differs when only passive control group studies were taken into account
AC
a subgroup analysis was conducted. Heterogeneity
I² was used to describe the proportion of total variation in study estimates that is due to statistical heterogeneity (27). An I² estimate of 25% or less was interpreted as low (28). Correlational Analyses To test the influence of differences in baseline depression scores on the effectiveness of the interventions, correlations between baseline values (as percentage of the total score) and 9
ACCEPTED MANUSCRIPT standardized mean differences were calculated for all included studies and for studies with a baseline depression score over the clinical cut-off value for (mild) depression separately. Results Study selection The initial search resulted in a total of 603 articles, and a total of four studies was identified through
CR IP T
other sources, specifically, manual searches in the lists of references from empirical studies, and systematic reviews (see Figure 1). After eliminating duplicates, 385 articles remained for title and abstract scan. 80 articles were identified as relevant or possibly relevant and were full text reviewed by two independent authors (FD and MH). The 210 articles found using the Cochrane Library led only
AN US
to the inclusion of one additional study in the meta-analysis (29).
For four studies (30–33), the provided data could not be converted due to missing data (mean and standard deviation). For these reasons, these studies could be only described narratively but were
Please insert Figure1 here -
ED
-
M
not included in the quantitative meta-analysis.
PT
A total of 33 studies (34–39, 32, 31, 40–56, 33, 57–60, 29, 30, 61) with overall 3313 participants was included in the qualitative synthesis and 29 (54, 34–53, 55–61, 29) studies with full (pre-post) data
CE
sets of 2672 participants were included in the meta-analysis.
AC
Study Participants
The mean age of the participants was between 46 and 71 years, with an overall mean age of around 62 years. Age of the participants ranged between 18 and the mid-eighties, but not all studies reported age-ranges. Except for two studies (46, 53), the participants were predominantly female caregivers, and in four studies (40, 42, 56, 59), only female caregivers were included. In one study (46), the intervention was addressed to male caregivers only. The sample size ranged from eleven (32) to 299 (35). 10
ACCEPTED MANUSCRIPT Intervention characteristics The interventions in the trials were all technology based, comprising telephone, web-based interventions, DVD/video, or a combination of telephone and computer or DVD/video. Telephone interventions In eleven studies, a telephone intervention was conducted. In terms of delivery, in three studies
CR IP T
telephone support groups were implemented (42, 47, 51). In two of these studies (42, 51), telephone group meetings of five to six caregivers headed by a trained social worker or group leader were conducted and topics like coping strategies and behavior management were discussed. In one study (47), four to five caregivers in a peer telephone network called each other in a rotating pattern
AN US
for supportive conversations.
Five studies conducted individual sessions (34, 41, 43, 58, 61), with treatments of behavioral activation (e.g. pleasant event scheduling), psychoeducation, coping strategies, supportive approaches, or cognitive-behavioral therapy. Two studies consisting of group and individual sessions
M
(33, 38) conducted a telephone-based cognitive behavioral therapy. One study (31) used a
ED
telephone-based collaborative care management program with multiple modules such as communication skills, stress management, and coping skills.
PT
Computer/web-based interventions
Eleven studies investigated a computer/web-based intervention. These studies were delivered via
CE
online platform (48), application (52), internet course (44), or web-based program (32, 35, 36, 39,
AC
53, 55, 29, 30). Different modules like psychoeducation, relaxation training, daily tasks, and communication skills were offered for caregivers. In eight studies (35, 36, 48, 52, 53, 55, 29, 30), the intervention was personalized for the user. In one study (44), caregivers received individualized feedback from a trained coach. In seven interventions, videos to specific topics were available for the caregiver (35, 36, 39, 44, 52, 30, 48). Contact to other caregivers through private mail and a forum (55), via Facebook and LinkedIn (48) or another social network section (52, 53) was implemented in four trials. 11
ACCEPTED MANUSCRIPT In one study, the conducted online training workshop was not described in detail (32), but it was mentioned that participants had workshops for gaining knowledge and skills and got information about the use of online resources. Combined interventions In ten studies, a combined intervention of telephone and computer (37, 45, 50), or telephone and
CR IP T
DVD/video (40, 46, 49, 56, 57, 59, 60) was found. Two studies used a computer-telephone-integrated system for calls, conferences and information (37, 45) and in one study a computer-mediated automatic voice response system was implemented (50).
AN US
In trials with telephone calls and video sessions the treatments supplemented each other by dealing with the same issue such as behavioral strategies (e.g. activation, management of disruptive behaviors, relaxation training) (40, 46, 59), psychoeducation (49, 57, 60), or sportive exercises (56). DVD/video
M
One study used only DVDs as treatment (54).
ED
In most of the studies, additionally, a workbook or manual was provided for the participants. Treatment duration and control groups
PT
The duration of the interventions varied from 30 days (35) to twelve month (e.g. (55)). As control intervention, 17 trials (31, 33, 35–37, 42–44, 48, 50–53, 56, 58, 29, 61) used a passive
CE
control such as waiting list, usual care, no intervention, or the participants in the control group got
AC
printed or online information without any further intervention. 13 trials (54, 32, 34, 38–41, 46, 47, 49, 55, 30, 59) used an active control group such as educational information, face-to-face therapy, or a second technology-based intervention and three studies (45, 57, 60) had both a passive and an active control group. Outcomes Depressive symptoms were most often measured with the Center for Epidemiological Studies Depression Scale (CES-D) (62, 63) (studies (54, 32–35, 37–39, 41–45, 50–52, 55, 56, 29, 60, 61)), with 12
ACCEPTED MANUSCRIPT the Beck Depression Inventory (BDI) (64) in four studies (36, 40, 53, 57) (data were reported only in three studies), with the Geriatric Depression Scale (GDS) (65), the Patient Health Questionnaire (PHQ) (66), and the Brief Symptom Inventory (BSI) (67) in one study each (58, 30, 59). To asses caregiver burden, the Zarit Burden Interview (ZBI) (68) was used in twelve studies (32, 31, 36, 41, 42, 47, 49, 51, 53, 58, 29, 30) and the original or revised Memory and Behavior Problem Scale
CR IP T
(RMBPC) (69) or subscales of this questionnaire were used in 17 studies (54, 31, 36–41, 44–47, 50, 51, 56, 58, 60), but in three studies the data of the RMBPC were not reported in the article. Other scales to measure burden were the Impact of caregiver scale (70) (study (55)), the Caregiver Strain Instrument (71) (study (35)), the subscale “subjective burden” of the Caregiver Appraisal Inventory
AN US
(CAI) (72) (studies (33, 38, 59)), a visual analogue scale (ranging from 0 to 100) (61) and in one study burden was assessed with only one question (48). Efficacy of interventions
Meta-analysis was conducted for the outcome depression with 24 studies (54, 34–45, 50–52, 55–58)
M
(29, 59–61) and burden with 22 studies (54, 35–42, 46–51, 53, 55, 56, 58, 29, 60, 61) separately.
ED
Depression
The pooled analysis for the 24 studies with 2453 participants showed a small effect in favor of the
PT
intervention on caregiver depression (SMD = -0.20; 95% confidence interval (CI) -0.31 to -0.10; I² = 36%; Figure 2). The highest effect size was shown for combined interventions (SMD = -0.31; 95%
CE
confidence interval (CI) -0.53 to -0.10; I² = 41%). A significant effect size was found also for
AC
telephone interventions (SMD = -0.24; 95% CI –0.40 to -0.08; I² = 26%). The effect size for the subgroup “DVD” (one study only) was not significant (SMD = -0.33; 95% CI -0.81 to 0.14; I² = not applicable). Computer/web-based interventions showed the smallest effect size (SMD = -0.06; 95% CI -0.24 to 0.13; I² = 38%). In the main meta-analysis with all included studies, we preferred active control groups over passive control groups. We then conducted a subgroup analysis for passive control groups only. 15 studies which provided data for a passive control group were included (29, 35–37, 42–45, 50–52, 56–58, 61). 13
ACCEPTED MANUSCRIPT The overall pooled effect was similar to the main meta-analysis (SMD = -0.20; 95% CI -0.32 to -0.07; I² = 69%). Burden 22 studies with 2101 participants were included in the pooled analysis on caregiver burden. A significant, albeit small effect could be shown (SMD = -0.13; 95% CI -0.24 to -0.02; I² = 32%; Figure 3).
CR IP T
Similar to the results for the outcome depression, for the outcome caregiver burden, combined interventions showed the highest effect size (SMD = -0.20; 95% CI -0.48 to 0.09; I² = 52%), whereas computer/web-based interventions showed the smallest effect size (SMD = -0.03; 95% CI -0.21 to 0.14; I² = 21). Telephone interventions showed a small, but nonsignificant effect in favor of the
AN US
intervention (SMD = -0.10; 95% CI -0.24 to 0.03; I² = 0%). One study was included in the subgroup “DVD/video” (SMD = -0.58; 95% CI -1.06 to -0.10; I² = not applicable).
For the outcome burden, twelve studies could be included in the subgroup analysis for passive control groups (29, 35–37, 48, 50, 51, 53, 42, 56, 58, 61). The effect did not reach statistical
ED
M
significance (SMD = -0.07; 95% confidence interval (CI) -0.22 to 0.08; I² = 37%).
Please insert Figure2 here -
-
Please insert Figure3 here -
PT
-
CE
Risk of Bias of the included studies
AC
A summary of the risk of bias assessment is shown in Figure 4 (see Figure, SDC_2_ Risk of Bias, which offers a more detailed table of the risk of bias for each included study). A randomized allocation was conducted in all included studies, but only 14 studies described the specific randomization method, such as software or computerized random-number generators. The blinding of the participants was only described in two studies (34, 44) and the risk was rated as low. For six studies, a protocol was available and all relevant variables were named in the protocol. Overall, the risk of bias was not rated as high and no studies were excluded from the analyses based 14
ACCEPTED MANUSCRIPT on risk-of-bias assessments. However, it should be noted that there was a lack of clear reporting in many trials which makes it difficult to determine the overall quality of the studies.
-
Please insert Figure4 here -
CR IP T
Correlational Analyses Referring to all studies that collected depression scores, no significant correlation could be found (r=-.23, ns) between depression baseline values and the standardized mean differences associated with the intervention. Including only studies with a baseline value over the defined cut-off for having
AN US
at least mild depression (43, 44, 55, 45, 39, 51, 52, 40, 41, 61), a significant negative correlation was shown (r=-.89, p<0.05). Discussion
The current meta-analysis identified 33 randomized controlled trials reporting technology-based
M
interventions for informal caregivers of PWD. We found significant but small effects on caregiver
ED
depression and caregiver burden for caregivers receiving a technology-based intervention. In the subgroup analyses concerning different delivery modes for the intervention, differences could be
PT
found. The highest effect sizes were evident for combined interventions and the smallest effect sizes for computer/web-based interventions.
CE
The results for the outcome depression indicate evidence that technology-based interventions can
AC
help to improve the mental health of caregivers of PWD. Our findings are comparable to a prior meta-analysis by Scott et al. (73) who found a small significant post-intervention effect of pure technology-based cognitive behavioral therapy interventions for depression equivalent to face-toface interventions. Similar to Jackson et al. (20), we found the strongest effect for combined interventions. The meta-analysis concerning caregiver burden showed a significant, albeit small effect for the 22 included trials. Findings regarding caregiver burden are not consistent in the literature. As in this 15
ACCEPTED MANUSCRIPT meta-analysis, Pinquart and Sörensen (74) found a significant small effect for caregiver burden. On the contrary, Acton and Kang (75) found no overall effect for burden in their meta-analysis concerning interventions for reducing the burden of caregivers of PWD. They argued that a possible explanation for this result might be that burden is a global and multidimensional concept, showing a lack of conceptual clarity with both subjective and objective qualities. Instruments measuring
CR IP T
burden often not differ clearly between objective burden and subjective feelings about the impact of caregiving and this could lead to conflicting or unclear results. The studies included in this metaanalysis used different instruments to measure caregiver burden. The ZBI and the (R)MBPC were the most frequently used instruments. The ZBI was developed to measure subjective burden whereas
AN US
the (R)MBPC measures the impact of problematic behaviors in dementia on the caregiver. Seng et al. (76) showed that the ZBI and the (R)MBPC are strongly correlated. Similarly to a Cochrane review concerning telephone counselling for informal carers of PWD (77), we subsumed the (R)MBPC under the outcome burden. However, other authors have classified the (R)MBPC as problematic behavior
M
(78).
ED
An explanation for the very small effect that we found is that dementia is a progressively deteriorating and ultimately terminal disease. Feelings of grief, loss, and burden in caregivers may
PT
not be altered much even though interventions are perceived as helpful. Influence of baseline depression scores
CE
In the correlational analysis of all included studies, no significant correlation could be found.
AC
However, when we analyzed only studies with depression baseline values over the defined cut-off for at least mild depression, the correlation between baseline values of depression and the standardized mean differences was significantly negative. This result suggests that studies with higher mean caregiver depression baseline scores show smaller effect sizes. Despite this general finding, no conclusions with respect to individual differences in caregiver depression can be drawn. In contrast, in some of the included studies, the authors discussed lower baseline scores as a reason
16
ACCEPTED MANUSCRIPT for smaller effects sizes, leaving an inconclusive pattern with respect to the influence of baseline depression on treatment outcomes. Gallagher-Thompson et al. (54) discuss low baseline CES-D scores as an explanation for the absence of a significant decrease in depressive symptoms in the intervention group. Furthermore, Mahoney et al. (50) stated in their discussion that because of the low baseline values they experienced floor
CR IP T
effects and a meaningful decline of the values would be very unlikely. Future trials should consider baseline status of caregivers by developing interventions adapted to the needs of caregivers with more or less severe depression. Reasons for small effects
AN US
In the subgroup analyses of computer/web-based interventions, we found the smallest effect for both outcomes, depression and burden, compared to the other subgroups. It is possible that the attitude of the caregiver toward the delivery medium influences its effectiveness or that caregivers benefit more from personal contact as provided in phone-based interventions. Until now, in terms of
M
communication technologies, telephone communication is the most commonly adopted method
ED
among older adults (79). When it comes to the use of personal computers, middle-aged and older adults have been shown to have lower self-efficacy and increased anxiety compared to younger
PT
adults, which may affect the likelihood of the general use of this technology (80). However, also among older adults, differences in various age cohorts can be shown. With increasing age, the use
CE
and therefore the experience with the internet and smart phones is decreasing (10), which could
AC
make it more difficult to implement technology-based interventions in these cohorts. For subsequent generations, the use of computer, smartphones, and tablets will be more integrated in everyday life. Especially computer and web-based interventions offer practical assistance for caregivers of PWD because of their independence of time and location. Future research Mahoney et al. (50) argued in their discussion that they did not find a significant main effect in the intervention for reducing burden or depression scores, however, for caregivers with lower mastery 17
ACCEPTED MANUSCRIPT at baseline and for caregivers who were wives, results showed a significant effect. Differences in the characteristics of the subgroups may have influenced who most benefits from the intervention. Christancho-Lacroix et al. (36) found that specific subgroups of caregivers benefited more from the program and discussed the different needs of caregivers. Further research with a focus on the specific characteristics of caregivers is therefore suggested to better understand the needs of
CR IP T
specific subgroups. This finding is in line with the review of Zarit and Femia (22) who stated that family caregivers are a heterogeneous population and interventions should be “tailored” or
“adaptive” for varying profiles of risk and protective factors. Other methodological issues for
developing effective caregiver interventions are that the treatment mechanisms need to have a
AN US
functional link to the measured outcomes and that treatments need sufficient dosage to be
effective. Additionally, especially in non-face-to-face interventions, it can be difficult to assure that the treatment is delivered as planned. These points need to be taken into account for developing and testing future interventions.
M
Moreover, in this meta-analysis, we focused only on the direct effect of the intervention. For
ED
examining if effects are sustainable, future studies should also assess the long-term effects of technology-based interventions.
PT
Limitations
One limitation of this meta-analysis is the heterogeneity of the interventions in terms of
CE
implementation, content, dose, and study population. This affects the generalizability of the findings
AC
and it is not clear which part of the intervention specifically lead to the observed effect. We conducted subgroup analyses for different types of interventions, but we did not conduct other potential sub-analyses based on intervention dose or study population due to the small number of available studies. Meaningful subgroup analyses for gender could not be conducted since most study participants were female. Moreover, the division into subgroups e.g. according to dosage of delivery can be difficult. The aim of this article was to give an overview of the existing randomized control
18
ACCEPTED MANUSCRIPT trials in the field of technology-based interventions for informal caregivers of PWD and to provide an insight of the efficacy despite the apparent difficulties. While most included studies had comparatively small sample sizes, which may be seen as limitation in this research field, the meta-analysis of pooled data revealed significant effect sizes. Furthermore, we focused only on two main outcomes, depression and burden. Other possible
additional information about the effectiveness of interventions.
CR IP T
outcomes like anxiety, well-being or more specific outcomes such as goal attainment could provide
In a review of Cheng (81), the author showed that various neuropsychiatric symptoms of the care recipient are predictive of caregiver burden and depression. In addition to caregiver-focused
AN US
interventions, patient-focused interventions that improve the management of such symptoms could complement effects to improve caregiver outcomes and should attract attention in further research. Conclusion
In conclusion, this meta-analysis provides evidence for a small positive effect of technology-based
M
interventions on depression and caregiver burden in informal caregivers of PWD. The strongest
ED
effects were recorded for combined interventions. Overall, the estimated effect sizes were small. At the same time, even small and subthreshold improvements in levels of depressivity and burden have
PT
been associated with a reduction of unfavorable outcomes in caregivers (7) and a decreased risk for institutionalization in PWD (8), and hence together with the fact that many caregivers can be
CE
reached by technology-based interventions these effect sizes may be relevant from a public health
AC
perspective. More high quality RCTs and effectiveness trials are needed to examine specific components or combinations of components of interventions in order to enhance comparability between studies and allow subgroup analyses.
19
ACCEPTED MANUSCRIPT Author and article information From the Department of Social- and Preventive medicine, University of Potsdam, Potsdam, Germany. Address correspondence to M. A. Rapp (
[email protected]). F. Deeken and M. A. Rapp conceived the idea for the meta-analysis, designed the study and wrote the study protocol. F. Deeken conducted the structured literature search, abstract scan, full-text
CR IP T
scan and managed data analyses. As secondary reviewer M. Hinz conducted the full-text scan, A. Rezo verified the data and was involved in the analyses and R. Discher assessed the study quality of the included studies.
F. Deeken wrote the first version of the manuscript together with M. A. Rapp. All authors revised the
AN US
manuscript for intellectual content. The final manuscript was read and approved by all authors. The study protocol of this meta-analysis is registered at PROSPERO (International Prospective Register of Systematic Reviews) (Registration: CRD42017053959).
Supported by the Karl und Veronica Carstens-Foundation. The Carstens-Foundation provided a
M
partial schorlarship to F. Deeken and A. Rezo as part of the National Graduate College “Optimization
ED
strategies in Dementia - OptiDem”. The funder had no role in study design, data collection, data analysis, data interpretation, or preparation of the manuscript.
AC
CE
PT
The authors report no financial relationships with commercial interests.
20
ACCEPTED MANUSCRIPT
References Karlsson S, Bleijlevens M, Roe B, Saks K, Martin MS, Stephan A, Suhonen R, Zabalegui A, Hallberg IR: Dementia care in European countries, from the perspective of people with dementia and their caregivers. Journal of advanced nursing 2015; 71(6):1405–1416
2.
Gilhooly KJ, Gilhooly MLM, Sullivan MP, McIntyre A, Wilson L, Harding E, Woodbridge R, Crutch S: A meta-review of stress, coping and interventions in dementia and dementia caregiving. BMC geriatrics 2016; 16:106
3.
Schulz R, Belle SH, Czaja SJ, Gitlin LN, Wisniewski SR, Ory MG: Introduction to the special section on Resources for Enhancing Alzheimer's Caregiver Health (REACH). Psychology and aging 2003; 18(3):357–360
4.
Schulz R, Beach SR: Caregiving as a Risk Factor for Mortality. JAMA 1999; 282(23):2215
5.
Jang SI, Bae HC, Shin J, Jang SY, Hong S, Han KT, Park EC: Depression in the Family of Patients with Dementia in Korea. American journal of Alzheimer's disease and other dementias 2016; 31(6):481–491
6.
Sallim AB, Sayampanathan AA, Cuttilan A, Ho R: Prevalence of mental health disorders among caregivers of patients with alzheimer disease. Journal of American Medical Directors Association 2015; (16):1034–1041
7.
Andrén S, Elmståhl S: The relationship between caregiver burden, caregivers’ perceived health and their sense of coherence in caring for elders with dementia. J Clin Nurs 2008
8.
Eska K, Graessel E, Donath C, Schwarzkopf L, Lauterberg J, Holle R: Predictors of institutionalization of dementia patients in mild and moderate stages: a 4-year prospective analysis. Dementia and geriatric cognitive disorders extra 2013; 3(1):426–445
9.
Hux MJ, O’Brien BJ, Iskedjian M, Goerce R, Gagnon M, Gauthier S: Relation between severity of Alzheimers disease and costs of caring. Canadian Medical Association Journal 1998; (159):457– 465
ED
M
AN US
CR IP T
1.
PT
10. Smith A: Older adults and technology use. Pew Research Center [Internet & American Life Project] 2014
CE
11. Fox S: Older Americans and the internet: Washington, DC: Pew Internet & American Life Project. 2004 12. Olson KE, O'Brien MA, Rogers WA, Charness N: Diffusion of Technology: Frequency of Use for Younger and Older Adults. Ageing international 2011; 36(1):123–145
AC
13. Smalley KB, Yancey CT, Warren JC, Naufel K, Ryan R, Pugh JL: Rural mental health and psychological treatment: a review for practitioners. Journal of clinical psychology 2010; 66(5):479–489 14. Buckwalter KC, Davis LL: Elder Caregiving in Rural Communities, in Rural Caregiving in the United States. Edited by Talley RC, Chwalisz K, Buckwalter KC. New York, NY, Springer New York, 2011, pp 33–46 15. Covinsky KE, Newcomer R, Fox P, Wood J, Sands L, Dane K, Yaffe C: Patient and Caregiver Characteristics Associated with Depression in Caregivers of Patients with Dementia. J Gen Intern Med 2003; (18):1006–1014
21
ACCEPTED MANUSCRIPT 16. Gitlin LN, Belle SH, Burgio LD, Czaja SJ, Mahoney D, Gallagher-Thompson D, Burns R, Hauck WW, Zhang S, Schulz R, Ory MG: Effect of multicomponent interventions on caregiver burden and depression: the REACH multisite initiative at 6-month follow-up. Psychology and aging 2003; 18(3):361–374 17. Colvin J, Chenoweth L, Bold M, Harding C: Caregivers of older adults: Advantages and disadvantages of Internet-based social support. Fam Relat 2004; 53(1):49–57
CR IP T
18. Boots LMM, Vugt ME de, van Knippenberg, R. J. M. Kempen, G. I. J. M. Verhey FRJ: A systematic review of internet‐based supportive interventions for caregivers of patients with dementia. Int J Geriatr Psychiatry 2014; 29(4):331–344 19. Godwin KM, Mills WL, Anderson JA, Kunik ME: Technology-driven interventions for caregivers of persons with dementia: A systematic review. Am J Alzheimers Dis Other Demen 2013; 28(3):216–222 20. Jackson D, Roberts G, Wu ML, Ford R, Doyle C: A systematic review of the effect of telephone, intrenet or combined support for carers of people living with Alzheimer`s, vascular or mixed dementia in the community. Archives of Gerontoloy and Geriatrics 2016; (66):218–236
AN US
21. Waller A, Dilworth S, Mansfield E, Sanson-Fisher R: Computer and telephone delivered interventions to support caregivers of people with dementia: a systematic review of research output and quality. BMC geriatrics 2017; 17(1):265 22. Zarit SH, Femia EE: A future for family care and dementia intervention research? Challenges and strategies. Aging & mental health 2008; 12(1):5–13
M
23. Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group: Preferred Reporting Items for Systematic Reviews and Meta- Analyses: The PRISMA Statement. 2009
ED
24. Higgins J.P.T. Green S. editors: Cochrane Handbook for Systematic Reviews of Interventions. Chichester, 2011 25. Review Manager (RevMan) [Computer program]. Version 5.3.: Copenhagen: The Nordic Cochrane Centre, The Cochrane Collaboration, 2014.
CE
PT
26. Borenstein M, Hedges L, Rothstein H: Meta-analysis fixed effects vs. random effects. Online available from: https://www.meta-analysis.com/downloads/Metaanalysis%20fixed%20effect%20vs%20random%20effects%20072607.pdf 2007 27. Higgins JPT, Thompson SG: Quantifying heterogeneity in a meta-analysis. Statistics in medicine 2002; 21(11):1539–1558
AC
28. Deeks JJ, Higgins JPT, Altmann DG: Chapter 9: Analysing data and undertaking meta-analyses. 2008:244–296 29. Kales HC, Gitlin LN, Stanislawski B, Kim HM, Marx K, Turnwald M, Chiang C, Lyketsos CG: Effect of the WeCareAdvisor (TM) on family caregiver outcomes in dementia: a pilot randomized controlled trial. BMC geriatrics 2018; 18 30. Hicken BL, Daniel C, Luptak M, Grant M, Kilian S, Rupper RW: Supporting Caregivers of Rural Veterans Electronically (SCORE). The Journal of rural health : official journal of the American Rural Health Association and the National Rural Health Care Association 2017; 33(3):305–313 31. Mavandadi S, Wright EM, Graydon MM, Oslin DW, Wray LO: A randomized pilot trial of a telephone-based collaborative care management program for caregivers of individuals with dementia. Psychol Serv 2017; 14(1):102–111 22
ACCEPTED MANUSCRIPT 32. Lai CKY, Wong LF, Liu K, Lui W, Chan MF, Yap LSY: Online and onsite training for family caregivers of people with dementia: Results from a pilot study. Int J Geriatr Psychiatry 2013; 28(1):107–108 33. Glueckauf RL, Jeffers SB, Sharma D, Massey AJ, Davis WS, Wesley LM, Byrd V, McIntyre V, Stine C, Martin C: Telephone-Based Cognitive-Behavioral Intervention for Distressed Rural Dementia Caregivers. Clinical Gerontologist 2007; 31(1):21–41 34. Au A: Developing volunteer-assisted behavioral activation teleprograms to meet the needs of Chinese dementia caregivers. Clin Gerontol 2015; 38(3):190–202
CR IP T
35. Beauchamp N, Irvine AB, Seeley J, Johnson B: Worksite based internet multimedia program for family caregivers of persons with dementia. Gerontologist 2005; 45(6):793–801 36. Cristancho-Lacroix V, Wrobel J, Cantegreil-Kallen I, Dub T, Rouquette A, Rigaud A-S: A Webbased psychoeducational program for informal caregivers of patients with Alzheimer’s disease: A pilot randomized controlled trial. J Med Internet Res 2015; 17(5)
AN US
37. Finkel S, Czaja SJ, Schulz R, Martinovich Z, Harris C, Pezzuto D: E-care: A telecommunications technology intervention for family caregivers of dementia patients. Am J Geriatr Psychiatry 2007; 15(5):443–448 38. Glueckauf RL, Davis WS, Willis F, Sharma D, Gustafson DJ, Hayes J, Stutzman M, Proctor J, Kazmer MM, Murray L, Shipman J, McIntyre V, Wesley L, Schettini G, Xu J, Parfitt F, GraffRadford N, Baxter C, Burnett K, La Noël T, Haire K, Springer J: Telephone-based, cognitivebehavioral therapy for African American dementia caregivers with depression: Initial findings. Rehabil Psychol 2012; 57(2):124–139
ED
M
39. Kajiyama B, Thompson LW, Eto-Iwase T, Yamashita M, Di Mario J, Tzuang YM, GallagherThompson D: 'Exploring the effectiveness of an internet-based program for reducing caregiver distress using the iCare Stress Management e-Training Program': Corrigendum. Aging Ment Health 2013; 17(5):c1-c1 40. Steffen AM, Gant JR: A telehealth behavioral coaching intervention for neurocognitive disorder family carers. Int J Geriatr Psychiatry 2016; 31(2):195–203
PT
41. Tremont G, Davis JD, Papandonatos GD, Ott BR, Fortinsky RH, Gozalo P, Yue MS, Bryant K, Grover C, Bishop DS: Psychosocial telephone intervention for dementia caregivers: A randomized, controlled trial. Alzheimers Dement 2015; 11(5):541–548
CE
42. Winter L, Gitlin LN: Evaluation of a Telephone-Based Support Group Intervention for Female Caregivers of Community-Dwelling Individuals with Dementia. Am J Alzheimers Dis Other Demen 2007; 21(6):391–397
AC
43. Au A, Wong MK, Leung LM, Leung P, Wong A: Telephone-assisted pleasant-event scheduling to enhance well-being of caregivers of people with dementia: a randomised controlled trial. Hong Kong medical journal = Xianggang yi xue za zhi 2014; 20(3 Suppl 3):30–33 44. Blom MM, Zarit SH, Groot Zwaaftink, R. B. M. Cuijpers P, Pot AM: Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial. PloS one 2015; 10(2):e0116622 45. Eisdorfer C, Czaja SJ, Loewenstein DA, Rubert MP, Arguelles S, Mitrani VB, Szapocznik J: The effect of a family therapy and technology-based intervention on caregiver depression. The Gerontologist 2003; 43(4):521–531
23
ACCEPTED MANUSCRIPT 46. Gant JR, Steffen AM, Lauderdale SA: Comparative outcomes of two distance-based interventions for male caregivers of family members with dementia. American journal of Alzheimer's disease and other dementias 2007; 22(2):120–128 47. Goodman CC, Pynoos J: A model telephone information and support program for caregivers of Alzheimer's patients. The Gerontologist 1990; 30(3):399–404
CR IP T
48. Hattink B, Meiland F, van der Roest H, Kevern P, Abiuso F, Bengtsson J, Giuliano A, Duca A, Sanders J, Basnett F, Nugent C, Kingston P, Droes R-M: Web-Based STAR E-Learning Course Increases Empathy and Understanding in Dementia Caregivers: Results from a Randomized Controlled Trial in the Netherlands and the United Kingdom. Journal of medical Internet research 2015; 17(10):e241 49. Kwok T, Wong B, Ip I, Chui K, Young D, Ho F: Telephone-delivered psychoeducational intervention for Hong Kong Chinese dementia caregivers: a single-blinded randomized controlled trial. Clinical interventions in aging 2013; 8:1191–1197
AN US
50. Mahoney DF, Tarlow BJ, Jones RN: Effects of an automated telephone support system on caregiver burden and anxiety: findings from the REACH for TLC intervention study. The Gerontologist 2003; 43(4):556–567
51. Martindale-Adams J, Nichols LO, Burns R, Graney MJ, Zuber J: A trial of dementia caregiver telephone support. The Canadian journal of nursing research = Revue canadienne de recherche en sciences infirmieres 2013; 45(4):30–48
M
52. Núñez-Naveira L, Alonso-Bua B, Labra C de, Gregersen R, Maibom K, Mojs E, KrawczykWasielewska A, Millan-Calenti JC: UnderstAID, an ICT Platform to Help Informal Caregivers of People with Dementia: A Pilot Randomized Controlled Study. BioMed research international 2016; 2016:5726465
ED
53. Torkamani M, McDonald L, Saez Aguayo I, Kanios C, Katsanou M-N, Madeley L, Limousin PD, Lees AJ, Haritou M, Jahanshahi M: A randomized controlled pilot study to evaluate a technology platform for the assisted living of people with dementia and their carers. Journal of Alzheimer's disease 2014; 41(2):515–523
CE
PT
54. Gallagher-Thompson D, Wang PC, Liu W, Cheung V, Peng R, China D, Thompson LW: Effectiveness of a psychoeducational skill training DVD program to reduce stress in Chinese American dementia caregivers: results of a preliminary study. Aging & mental health 2010; 14(3):263–273
AC
55. Brennan PF, Moore SM, Smyth KA: The effects of a special computer network on caregivers of persons with Alzheimer`s disease. Nursing Research 1995; (44):166–172 56. Connell CM, Janevic MR: Effects of a Telephone-Based Exercise Intervention for Dementia Caregiving Wives: A Randomized Controlled Trial. Journal of applied gerontology : the official journal of the Southern Gerontological Society 2009; 28(2):171–194 57. Steffen AM: Anger management for dementia caregivers: A preliminary study using video and telephone interventions. Behavior Therapy 2000; 31(2):281–299 58. Tremont G, Davis JD, Bishop DS, Fortinsky RH: Telephone-Delivered Psychosocial Intervention Reduces Burden in Dementia Caregivers. Dementia 2008; 7(4):503–520 59. Chang BL: Cognitive-behavioral intervention for homebound caregivers of persons with dementia. Nurs Res 1999; 48(3):173–182 24
ACCEPTED MANUSCRIPT 60. Czaja SJ, Loewenstein D, Schulz R, Nair SN, Perdomo D: A videophone psychosocial intervention for dementia caregivers. The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry 2013; 21(11):1071–1081 61. Wilz G, Reder M, Meichsner F, Soellner R: The Tele.TAnDem Intervention: Telephone-based CBT for Family Caregivers of People With Dementia. The Gerontologist 2018; 58(2):e118-e129 62. Irwin M, Artin KH, Oxman MN: Screening for depression in the older adult: criterion validity of the 10-item Center for Epidemiological Studies Depression Scale (CES-D). Arch intern Med 1999; (159):1701–1704
CR IP T
63. Radloff LS: The CES-D Scale: a self-report depression scale for research in general population. Applied Psychological Measurement 1977; (1):385–401 64. Beck A, Speer R, Brown G: Beck Depression Inventory: Second Edition Manual. The Psychological Corporation: San Antonio 1996
AN US
65. Yesavage JA, Brink TL, Rose TL, Lum O, Huang V, Adey M, Leirer VO: Development and validation of a geriatric depression screening scale: A preliminary report. Journal of Psychiatric Research 1983; (17):37–49 66. Kroenke K, Spitzer RL: The phq-9: a new derpession diagnostic and severity measure. Psychiatric Annals 2002; (32):509–521 67. Derogatis LR: The Brief Symptom Inventory (BSI) Administration, Scoring & Procedures ManualII. Clinical Psychometric Research 1992
M
68. Zarit SH, Reever KE, Bach-Peterson J: Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 1980; (20):649–655
ED
69. Teri L, Truaz P, Logsdon R, et al.: Assessment of behavioral problems in dementia patients: the Revised Memory and Behavior Checklist. Psychol Aging 1992; (7):622–631 70. Poulshock S, Deimling G: Families caring for elders in residence: issues in the measurement of burden. Journal of Gerontology 1984; (39):230–239
PT
71. Bass DM, Mc Clendon MJ, Flatley-Brennan P, McCarthy C: The buffering effect of a computer support network on caregiver strain. Journal of aging and health 1998; (10):20–43
CE
72. Lawton MP, Kleban M, Moss M, Rovine M, Glicksman A: Measuring caregiving appraisal. The Journal of Gerontontology 1989; (37):91–99
AC
73. Scott JL, Dawkins S, Quinn MG, Sanderson K, Elliott K-EJ, Stirling C, Schüz B, Robinson A: Caring for the carer: a systematic review of pure technology-based cognitive behavioral therapy (TBCBT) interventions for dementia carers. Aging & mental health 2016; 20(8):793–803 74. Pinquart M, Sörensen S: Helping caregivers of persons with dementia: which interventions work and how large are their effects? Int Psychogeriatr 2006:577–595 75. Acton GJ, Kang J: Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis. Research in nursing & health 2001; 24(5):349–360 76. Seng BK, Luo N, Ng WY, Lim J, Chionh HL, Goh J, Yap P.: Validity and Reliability of the Zarit Burden Interview in Assessing Caregiving Burden. Annals of the Academy of Medicine 2010 77. Lins S, Hayder-Beichel D, Rücker G, Motschall E, Antes G, Meyer G, Langer G: Efficacy and experiences of telephone counselling for informal carers of people with dementia. The Cochrane database of systematic reviews 2014; (9):CD009126 25
ACCEPTED MANUSCRIPT 78. Pendergrass A, Becker C, Hautzinger M, Pfeiffer K: Dementia Caregiver Interventions: A Systematic Review of Caregiver Outcomes and Instruments in Randomized Controlled Trials. International Journal of Emergency Mental Health and Human Resilience 2015:459–468 79. Yuan S, Hussain SA, Hales KD, Cotten SR: What do they like?: Communication preferences and patterns of older adults in the United States: The role of technology. Educational Gerontology 2015; 42(3):163–174
CR IP T
80. Czaja SJ, Charness N, Fisk AD, Hertzog C, Nair SN, Rogers WA, Sharit J: Factors predicting the use of technology: findings from the Center for Research and Education on Aging and Technology Enhancement (CREATE). Psychology and aging 2006; 21(2):333–352
AC
CE
PT
ED
M
AN US
81. Cheng S-T: Dementia Caregiver Burden: a Research Update and Critical Analysis. Current psychiatry reports 2017; 19(9):64
26
ACCEPTED MANUSCRIPT
PT
ED
M
AN US
CR IP T
Figures
AC
CE
Figure 1: Flow diagram of study selection process.
27
ED
M
AN US
CR IP T
ACCEPTED MANUSCRIPT
AC
CE
PT
Figure 2: Forest plot of comparison: technology-based vs. control group for the outcome depression.
28
M
AN US
CR IP T
ACCEPTED MANUSCRIPT
AC
CE
PT
ED
Figure 3: Forest plot of comparison: technology-based vs. control group for the outcome burden.
29
CR IP T
ACCEPTED MANUSCRIPT
AC
CE
PT
ED
M
AN US
Figure 4: Risk of Bias.
30
Tables Table 1: Characteristics of included studies
Au, 2014
Participants/ Sample Size/ Mean age (years)/ Female (%) Caregivers of people with dementia N=60
Intervention
Control group
Telephone-assisted pleasant event scheduling (TAPES) 3 components: behavioral activation, 6 subsequent phone calls, active coping
passive CG: Treatment as usual (TAU)
Psychoeducation with behavioral activation (PsyED-BA) group, 4 weeks psychoeducation + 8 biweekly sessions of BA practice focused on pleasant event scheduling and improving communications
active CG: Psychoeducation only (PsyED Only) group, 4 weeks psychoeducation + 8 biweekly sessions of general discussion of psychoeducation and related information via telephone.
Web-based multimedia intervention: Caregiver´s friend: Dealing with dementia Provides text material and videos. Individualized tailoring Multiple components (knowledge, cognitive and behavioral skills)
passive CG: Usual care waitlist control group with no attention-placebo (free to view Caregivers friend after T2)
Internet course Mastery over Dementia (MoD) Information (text material and
passive CG: e-bulletins (digital newsletter) sent by e-mail
Informal family caregiver of a person with dementia Beauchamp, 2005
N=299 Mean age = 46.90 Female = 73.00%
AC
Blom,
CE
Family caregivers of people with dementia
ED
N=96 Mean age = 56.23 Female = 80.00%
PT
Au, 2015
M
Mean age = 56.60 female = 77.00% Informal family caregiver for a care recipient diagnosed with Alzheimer’s disease
Outcome measure
Duration/ Intensity
Results/ Principal findings
CES-D
6 telephone calls (20 min) 4 weeks
The TAPES group had significantly lower levels of depressive symptoms than the TAU group post-intervention.
CES-D (20 item)
PsyED: 4 weeks/30min BA: 4 month/8 biweekly calls
Significant decrease of depressive symptoms in PsyED-BA group postintervention.
CES-D (9 item)
30 days access
Participants in the intervention group reported significantly greater reductions in caregiver strain und depressive symptomatology.
8 lessons + 1 booster session (over 5-6
Caregiver in the experimental group showed significantly lower symptoms of depression post
AN US
Study (first author)/ Year
CR IP T
ACCEPTED MANUSCRIPT
Caregiver Strain Instrument (three subscales) CES-D (20 item)
31
2015
N=251
Brennan, 1995
Mean age = 61.20 Female = 69,40% Caregivers of persons with Alzheimer`s disease
videos), exercises, homework (electronic feedback), evaluation One booster session ComputerLink group 3 functions: information, decision support, communication
active CG: Placebo training
Christancho -Lacroix, 2015
Informal caregivers of persons with Alzheimer´s disease N=49 Mean age = 61.65 Female= 65.50% Primary caregivers for a spouse with dementia
Connell, 2009
N=157 Mean age= 66.80 Female = 100.00%
Brief Symptom Inventory (BIS): depression subscale
Diapason program: free passwordprotected website 12 thematic sessions (theoretical and practical information, video of health professionals, practice guide) + additional sections e.g. relaxation training, forum…
passive CG: Usual care: information about the illness
Health First: 14 telephone calls 1) Health First video 2) exercise videos 3) booklet 4)workbook 5) two “motivational” newsletters
passive CG: No intervention Written materials about physical activity at the end of the study
CES-D (11 item)
Technology-based multi-component psychosocial intervention
Active CG: Attention only Same format as in the intervention
CES-D (10 item)
CE
Caregivers of persons with dementia
AC
Czaja, 2013
intervention after adjustment for baseline differences.
12 month
Experimental group showed improvement in the depression score post-intervention.
8 weeks
Significant main effect in depression over time for intervention group. No significant differences in caregiver burden between groups
3 month, weekly session lasting 15 to 30 minutes
No significant mean differences in depression and burden for IG and CG.
14 telephone calls over 6 month
Significant greater average decline in depressive symptoms in the IG.
Caregiver Appraisal tool: burden subscale
M
Mean age = 66.50 Female = 100.00%
active CG: Attention only weekly calls
ED
N=65
Cognitive behavioral intervention Nurseline video-assisted modeling program (NVAMP) 1) videotapes demonstrating assisted modeling behavior 2) Nurseline support program (weekly Nurseline telephone calls)
PT
Family caregivers of persons with dementia
month)
CES- D (20-item)
Mean age = n/a Female = 67.00%
Chang, 1999
Impact of caregiver scale
AN US
N=102
CR IP T
ACCEPTED MANUSCRIPT
BDI II ZBI (French Version, 22 items) RMBPC
RMBPC
Participation in IG did not affect subjective caregiver burden postintervention.
RMBPC
5 month
Caregivers in the intervention group reported a decrease in burden.
32
Mean age = 60.90 Female = 81.00%
two in-home sessions and four sessions delivered via a CISCO IP 7900 videophone: education and skills training five videophone support group sessions
Passive CG: Information only Packet of educational material and one “check-in call”
caregiver notebook
Eisdorfer, 2003
American and Cuban American family caregivers of a patient with AD and related disorders
group (2 in-home sessions, 4 videophone sessions, 5 videophone support group sessions) Content: nutrition and healthy eating
Computer-telephone-integrated system (CTIS) (calls, conferences, reminders) and Structural Ecosystems Therapy (SET) course of 12 month
N=150
M
CBT Skill Training DVD Workbook (home practice exercise)
N=76 Mean age = 58.78 Female = 87.14% Male family dementia caregivers
Primarily behavioral strategies training: Videos (10 sessions)/ workbook/ telephone coaching (12 weekly phone calls)
CE
N=32
CES-D (20 item) RMBPC
passive CG: Information-only Basic educational material, 2 brief (<15min) telephone check-in calls
CES-D (10 item)
active CG: Education DVD Written educational material
CES-D (20 item)
12 month (weekly session for the first 4 month, biweekly the next 3 month, monthly the last 6 month)
Caregiver in the IG showed a significant reduction in the depression scores after 6 month. After 18 month, mean CES-D scores decreased in the IG. Results for the RMBPC not reported.
6 month, 12 sessions with the CTIS system
Caregivers in the IG reported a significant decrease in burden postintervention. Caregiver with a high depression score at baseline experienced a significant decline in depression. The intervention not led to a significant decline in depressive symptomatology.
RMBPC
12 week program
RMBPC For the RMBPC the mean reaction clearly decreased in the IG.
active CG: Education (booklet Basic dementia care guide)/ check-in-call (7 biweekly phone calls)
RMBPC
10 videos, 12 weekly calls
In both the IG and the CG a significant effect for postintervention improvement in the RMBPC was found.
Mean age = 71.60
AC
Gant, 2007
ED
GallagherThompson, 2010
N=46 Mean age = 64.60 Female = 67.60% Chinese American dementia caregivers
Computer-Telephone Integration system (CTIS): screen phone (calls, messages, information, conferences)
PT
Finkel, 2007
Passive CG: telephone based minimal support condition (active listening and empathic comments)/ generic educational material active CG SET course of 12 month
Mean age= 68.48 Female = 75.00% Family caregiver of people with dementia
No significant effect for depression.
AN US
N=110
CR IP T
ACCEPTED MANUSCRIPT
33
Female = 0.00%
N=36
Cognitive Behavioral (CB) intervention program with multiple components: e.g. relaxation training, pleasant daily activities, problem-solving skills 12 weekly sessions (7 telephonebased group and 5 individual)
passive CG: Routine education and support (ES) Written educational materials
Telephone based cognitivebehavioral therapy 12, 1hour weekly sessions (7 group and 5 individual sessions) Guidebook, information about local dementia resources, The 36 Hour Day (copy)
active CG: Face-to-face cognitive behavioral therapy 12, 1hour weekly sessions (7 group and 5 individual sessions) Guidebook, information about local dementia resources, The 36 Hour Day (copy)
CES-D (20 item)
Mean age = 58.09 Female = 90.00%
Goodman, 1990
Caregivers of Alzheimer`s patients N= 66
Hattink, 2015
Mean age = 64.52 Female = 80.00% Informal caregivers of person with dementia N=46 Mean age = 53.88 Female = 71.50%
Hicken, 2016
Caregivers of rural veterans with dementia
AC
There was a trend in the direction of reduced caregiver burden in the IG, but pre-posttest differences did not reach statistical significance.
12 weeks, 1 hour weekly
Caregiver reported significant improvements in subjective burden and depression from pre- to posttreatment in IG and CG. No statistically significant effect could be found for group or interaction effects.
12 weeks
No change over time occurred for caregiver burden. No significant group x time effects were found neither for the MBPC nor for the ZBI.
RMBPC (17 items)
Subjective burden subscale of the CAI ZBI (23 item)
CB group reported a decline in depressive symptoms from pre to posttreatment, but this reduction was statistically not significant.
active CG: 12 telephone-accessed taped lectures about Alzheimer`s disease
STAR platform: online course, 8 modules (text, videos, interactive exercises, knowledge tests, references to other websites), personalized learning path through the modules
passive CG: Waiting list control group
Burden (1 item)
4 month, at least 4 modules
For informal caregiver in both groups, IG and CG, the burden score decreased from pre- to posttreatment but the effect was not statistically significant.
Electronic intervention (via internet or telehealth technology) 1) video vignettes (dementia progression/caregiving skills) 2) written information (health topics/caregiving skills)
active CG: Telephone support Monthly telephone call from the care manager Printed educational material DVD (content identical to the
ZBI (12 items)
4 – 6 month
No significant differences in change scores of burden or depression
CE
N=231 Mean age = 70.16 Female = 90.00%
CES-D (20 item)
12 weekly sessions; Group sessions: 45 min. Individual sessions: 60 minutes
Telephone support program Peer telephone network of 4-5 caregivers One call and one received call weekly (~15 min) supportive conversation over a 12-week period
ED
N=14
PT
Glueckauf, 2012
M
Mean age = 60.46 Female = 72.22% African American dementia caregiver with depression
Subjective burden subscale of the CAI
AN US
Glueckauf, 2007
Family caregivers of care recipients with progressive dementia in rural Panhandle area of Florida
CR IP T
ACCEPTED MANUSCRIPT
MBPC
Patient Health Questionnaire (depression symptoms)
34
Dementia family caregivers Kales, 2018
N=57 Mean age = 65.90 Female = 75.00%
family caregivers of persons with dementia
Kwok, 2013
WeCareAdvisor tool 1) guided DICE (describe, investigate, create and evaluate non-cognitive behavioral and psychological symptoms of the person with dementia) approach + strategies 2) Caregiver survival guide 3) daily messaging feature
N=11 Mean age = n/a Female = n/a
AC
CE
N=100 Mean age = 62.00 Female = 80,00%
Computer-mediated automatic interactive voice response (IVR) Integrated telephone network system IVR computer network system 4 modules (weekly caregiver`s conversation/personal Mailbox/Bulletin Board/ActivityRespite Conversation)
PT
Mahoney, 2003
Family caregivers of persons with Alzheimer`s disease
active CG: Educational DVD
Online group 7-week training workshop through a website
CES-D (20 item)
3 month
No significant pre- posttreatment changes were found for the RMBPC and the CES-D and the group x time interaction was not statistically significant, too.
1 month
No significant pre-posttreatment changes in depression and burden for intervention and control group.
ZBI (Chinese version, 22 items)
12 sessions (appr. ~30min), one session per week 12 weeks
Statistically significant reduction in caregiver burden in the IG compared to the CG.
CES-D (Chinese version)
7 weeks
No significant difference was found in the IG pre- and postintervention. Participants in the CG had significantly lower depression scores after the workshop.
12 month access to the IVR-mediated system
Overall, there was no significant main effect of the intervention in reducing RMBPC scores and CES-D scores, but there was a significant intervention effect for RMBPC and CES-D for participants with lower mastery at baseline.
RMBPC
CES-D (20 item) ZBI (12 item)
active CG: Onsite group 7-week workshop with face-to-face sessions
ED
Family caregivers of people with dementia
Passive CG: Waitlist control group
Educational DVD 12-session psychoeducation program over the telephone
N=42 Mean age = n/a Female = 71.10%
Lai, 2013
active CG: Education/information (EOC) Website, video-taped information, booklet
AN US
N=150 Mean age = 56.14 Female = 85.00%
electronic formats)
M
Dementia family caregivers Kajiyama, 2013
3) assessments (caregiver health/well-being) iCare (ICC): web-based program with 6 modules (e.g. information, communication skills, behavioral activation) workbook
CR IP T
ACCEPTED MANUSCRIPT
ZBI (Chinese version) passive CG: Reference booklet
CES-D (20 item) RMBPC
35
User`s manual
Caregivers of veterans with dementia Mavandadi, 2017
N=75 Mean age = 70.01 Female = 97.30%
Informal caregivers of people with dementia NúñezNaveira, 2016
N=77 Mean age = n/a Female = 63.90%
Dementia family caregivers Steffen, 2000
N=24
AC
ZBI (12 item) RMBPC
passive CG: Usual care, mailed general material
RMBPC (subscales)
ZBI (12 items)
The UnderstAID Application Learning section (text, videos, images), daily task section, social network section, personalized through interactive customization questionnaire
passive CG: No use of the application, maintained their usual lifestyle
8 psychoeducational video series Workbook (reading material and worksheets) Weekly phone calls (review progress on homework and problem solving of difficulties)
passive CG: Waitlist control group
CE
Mean age = 64.06 Female = 75.80%
Care management program 1) individualized dementia care management (min. 3 contacts (calls/visits) over 3 month) 2) Telehealth Education Program (TEP): manualized group-based telephonic education and psychosocial program modified for use with individual caregiver, individualized program: up to seven modules TEP workbook
CES-D (10 item)
AN US
Mean age = 66.00 Female = 83.70%
passive CG: Print materials Telephone numbers for local resources
M
N=154
ED
MartindaleAdams, 2013
Telephone support groups (5 or 6 caregivers), Multicomponent intervention: Education/coping skills/support (based on REACH II intervention)
PT
Family dementia caregivers
CR IP T
ACCEPTED MANUSCRIPT
CES-D (20 item)
12 month (2 month biweekly, than monthly), 14 meetings / 1hour
No significant treatment effect differences in the outcomes between IG and CG.
1. component: min. 3 contacts over 3 month 2. component: up to 7 modules
No significant group differences in reported global caregiver burden. Caregiver in the intervention arm reported greater reductions in their negative reaction to dementiarelated behavioral symptoms compared to caregiver in the CG over time.
3 month access
Caregiver in the IG had a significantly decrease in their depression scores pre- to postintervention. In the CG no significant difference for the depressive symptomatology was found.
active CG: Class-based viewing of the angermanagement video series (90min/week)
BDI (13 item)
8 week; weekly video segment (30 minutes); weekly phone calls (averaged 20 minutes)
Mean posttreatment BDI for the IG was significantly different than the passive CG (waitlist); The comparison between active and passive CG was not significant.
36
Family caregivers of people with dementia Torkmani, 2014
N=60 Mean age = 60.69 Female = 45.00%
Tremont, 2008
Dementia caregiver N=33 Mean age = 63.79 Female = n/a
Tremont, 2015
Distressed, family dementia caregivers N=250
passive CG: No intervention
Telephone-Tracking Dementia (FITTD) Multicomponent intervention: Orientation and psychoeducation, supportive approaches and active strategies
Telephone-Tracking Caregiver (FITTC) Orientation and psychoeducation/support/coping strategies
CE
Mean age = 62.72 Female= 78.00%
Computerized platform (ALADDIN) 4 key features “Aladdin TV”: educational material “Social networking”: communication with other caregivers “My tasks”: distant monitoring of the caregiver “Contact us”: communication between caregiver and health professional
AC
Family caregivers of
Tele.TAnDem Intervention
RMBPC
BDI II
BDI (21 item)
AN US
Mean age = 60.30 Female = 100.00%
10 videos (30 minutes), 12 calls (30 to 50 minutes) (14 weeks)
Post-intervention BDI and RMBPC scores were statistically lower in the IG compared to the CG.
6 month access
On average, the reported burden of caring decreased more in the IG than in the CG, but did not reach statistical significance.
ZBI (22 item)
passive CG: Standard care
M
N=74
active CG: Basic education (booklet Basic dementia care guide) and support (7 phone calls) “treatment as usual”
ED
Steffen, 2016
Behavioral Coaching condition: 10 video segments, workbook, 10 weekly telephone calls, 2 maintenance calls, telephone coaching in behavioral management, pleasant events scheduling, and relaxation
PT
Female family caregiver for a family member
CR IP T
ACCEPTED MANUSCRIPT
active CG: Telephone support (16 contacts) Empathic and reflective listening, provide non-directive support
GDS ZBI
RMBPC
CES-D ZBI RMBPC
passive CG:
CES-D (German
Results for depression scores were not reported due to missing data.
23 telephone calls over 12 month, approx. 12 hours of contact
Post-intervention caregiver in the IG showed significantly lower scores in the ZBI and the RMBPC than caregiver in the CG. Caregiver in the IG showed fewer depressive symptoms post-intervention than caregiver in the CG, but this difference did not reach statistical significance
6 month, 16 telephone contacts, length of calls: mean = 36,69 minutes
Caregiver in the IG improved significantly in depressive symptoms after 6 month compared to caregiver in the CG. There was no significant group differences for ZBI scores as well as for the reaction score of the RMBPC.
6 month
Post-intervention, symptoms of
37
Wilz, 2018
persons with dementia N=273
twelve 50-min sessions of individual cognitive-behavioral therapy delivered via telephone
usual care
N=103 Mean age = 66.60 Female = 100.00%
AN US
Winter, 2007
Telesupport groups (telephonebased): group of 5 caregivers for one hour per week Conducted by trained social workers
version)
depression decreased for participants of the intervention group compared with the control group. Post-Intervention, participants of the intervention group experienced a burden of care similar to that of participants in the control group.
Burden (visual analogue scale 1-100)
Mean age = 64.19 Female = 80.60%
Female family caregivers of dementia patients (Alzheimer's disease or related disorder)
CR IP T
ACCEPTED MANUSCRIPT
passive CG: No intervention
CES-D (20 items)
ZBI (22 items)
6 month (26 possible sessions)
No statistically significant differences between caregiver in the IG and CG at 6 months on depression and burden.
M
N= sample size; CG= control group; IG = intervention group; CES-D= Center for Epidemiology Studies Depression Scale; (R)MBPC= (Revised) Memory and Behavior Problem Checklist; ZBI= Zarit Burden Interview; BDI= Beck Depression Inventory; CAI=Caregiver Appraisal Inventory; AD=Alzheimer's disease,
ED
ALADDIN=Assisted living of Dementia elDerly INdividuals and their carers’; CBT=cognitive behavioral therapy; STAR=European Skills Training and Reskilling;
AC
CE
PT
n/a = not available
38
CR IP T
ACCEPTED MANUSCRIPT
List of Supplemental Digital Content
AN US
SDC_1_Search Terms.docx
AC
CE
PT
ED
M
SDC_2_ Risk of Bias.tif
39