Research in Gerontological Nursing

State of the Science Supplemental Data

Rural Dementia Caregivers and Technology: What Is the Evidence?

Nicole Ruggiano, PhD, MSW; Ellen L. Brown, EdD, MS, RN, FAAN; Juanjuan Li, RN; Monica Scaccianoce, DNP, PMHNP-BC

Abstract

Caregivers of adults with dementia often experience burden and depression as a result of their intensive caregiving activities. Dementia caregivers in rural communities experience additional barriers of large distances from health care providers and/or limited numbers of health care providers, which may further exacerbate burden. Technology has been identified as a platform for reducing dementia caregiver burden and stress, although the extent to which technologically based interventions have been tested with rural dementia caregivers is unknown. The current study involved a systematic review of technologically based interventions to assess the geography of sample populations, scope of interventions, and study outcomes. Of 8,348 articles identified and screened, 30 articles met eligibility guidelines. The current review found that few studies identified their sample population as living in rural communities. In addition, studies were more likely to report improved psychosocial outcomes of intervention groups, with few reporting positive effects on caregiving skills/self-efficacy. Implications for future research are discussed.

[Res Gerontol Nurs. 2018; 11(4):216–224.]

Abstract

Caregivers of adults with dementia often experience burden and depression as a result of their intensive caregiving activities. Dementia caregivers in rural communities experience additional barriers of large distances from health care providers and/or limited numbers of health care providers, which may further exacerbate burden. Technology has been identified as a platform for reducing dementia caregiver burden and stress, although the extent to which technologically based interventions have been tested with rural dementia caregivers is unknown. The current study involved a systematic review of technologically based interventions to assess the geography of sample populations, scope of interventions, and study outcomes. Of 8,348 articles identified and screened, 30 articles met eligibility guidelines. The current review found that few studies identified their sample population as living in rural communities. In addition, studies were more likely to report improved psychosocial outcomes of intervention groups, with few reporting positive effects on caregiving skills/self-efficacy. Implications for future research are discussed.

[Res Gerontol Nurs. 2018; 11(4):216–224.]

Alzheimer's disease and other forms of dementia affect approximately 5.5 million individuals annually, most of whom are non-institutionalized and receiving ongoing care at home by family caregivers (Alzheimer's Association, 2017; James et al., 2014). Technology-based interventions have been recognized for their potential in supporting dementia caregivers and increasing quality of dementia care (Vedel, Akhlaghpour, Vaghefi, Bergman, & Lapointe, 2013; Zulman, Piette, Jenchura, Asch, & Rosland, 2013). Such interventions may include support groups or training programs administered through the telephone, internet, or a mobile device. Technology-based interventions may be particularly helpful in supporting dementia caregivers living in rural settings, given the increased challenges these caregivers experience, such as far distances and limited options for health and supportive services (Bédard, Koivuranta, & Stuckey, 2004; Williams, Pennathur, Bossen, & Gloeckner, 2016). However, little research exists examining use of technology to support and educate rural caregivers. To address this gap in knowledge, the current systematic review examined the extent to which research on technology-based caregiver interventions has focused on rural caregiving populations. Policy, practical, and research implications of extending technology to rural dementia caregivers are discussed.

Challenges to Dementia Caregiving

Extensive literature exists on the challenges of dementia caregiving and implications of these challenges. Research has documented that burden, stress, and depression are commonly experienced by dementia caregivers, often as a result of inadequate and/or insufficient coping skills, low service use, insufficient support systems, and having to address the problematic cognitive and behavioral symptoms that are commonly associated with dementia (Alzheimer's Association, 2017; Kelly, 2015). The physical and mental health outcomes of these challenges and stressors for dementia caregivers in the United States resulted in health care costs of $9.3 billion in 2012 (Alzheimer's Association, 2017).

Potential Benefits of Dementia Caregiving Technology for Rural Caregivers

Dementia caregivers in rural settings experience additional challenges, as geographic distance may encumber timely access to health and support services, as well as education and information about dementia (Bédard et al., 2004; O'Connell et al., 2014). Therefore, using technology as a platform for delivering dementia caregiving interventions has potential for supporting rural caregiving populations. Compared to their non-rural counterparts, individuals with dementia living in rural communities are less likely to receive a dementia diagnosis and more likely to experience a preventable hospitalization (Abner, Jicha, Christian, & Schreurs, 2016; Thorpe, Van Houtven, Sleath, & Thorpe, 2010). In other areas of health care, technology-based interventions have been shown to facilitate interactive, virtual communication between providers and patients who are geographically distant, increasing patients' access to and quality of local services (Potter et al., 2016). Specific examples of success include videoconferencing for weight management (Ahrendt, Kattelmann, Rector, & Maddox 2014) and diabetes self-management support through nurse-facilitated telehealth coaching (Young et al., 2014). Therefore, supporting caregivers with technology-based solutions may improve their caregiving experience while also improving dementia care. In fact, in 2015, the Alabama Alzheimer's Disease Taskforce concluded that technology-based interventions may be a viable strategy for educating and supporting dementia care in under-served areas of rural Alabama.

Challenges in Extending Technology to Rural Settings

Although there are potential benefits to extending technology-based interventions to rural caregivers, there are also challenges. As internet access has expanded overall, adoption of and access to broadband internet in rural communities in the United States has lagged compared to urban and suburban communities (Howard, Busch, & Sheets, 2010; LaRose, Gregg, Strover, Straubhaar, & Carpenter, 2007). Although public libraries and other institutions have played a large role in providing broadband access to residents in rural communities, current infrastructure may create barriers to extending certain technologies, such as those that rely on internet and smartphone-based platforms, to rural dementia caregivers (Thiele, 2015).

Rationale and Objective for Review

The existing literature suggests that there are many potential benefits to supporting dementia caregivers, especially those in rural settings, with technology-based interventions (Vedel et al., 2013; Zulman et al., 2013). Technology may also help overcome barriers to disseminating existing dementia caregiver interventions that have shown effectiveness but are costly to administer in person, burdensome, or difficult for busy caregivers to participate in (Brown et al., 2016; Health Council of South Florida, 2010). However, the extent to which technology-based dementia caregiving interventions are tested and/or have demonstrated efficacy among rural caregivers is unclear. The current systematic review sought to address the following questions: (a) What types of technological platforms are used for interventions targeting dementia caregivers? (b) To what extent do researchers identify rural/urban community setting as a relevant variable? (c) To what extent are such interventions tested among rural dementia caregivers? and (d) To what extent are technology-based interventions effective in supporting and educating dementia caregivers?

Method

Search Strategy

Search Databases. The current systematic review was conducted using Covidence (access https://www.covidence.org) systematic review software, which is currently the standard platform for creating Cochrane reviews. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA; Moher, Liberati, Tetzlaff, & Altman [2009]) checklist was used as a guide for structuring the process and reporting of the review (access http://prisma-statement.org). Several databases were used to search for relevant articles, including CINAHL, PsycINFO, MEDLINE, ASSIA, Social Service Abstracts, and Social Work Abstracts.

Search Terms. The total list of search terms was as follows: caregivers or caregiv* or caretak* or carer* or caring; and Alzheimer disease or Alzheimer* or dementia, multi-infarct or dementia, vascular or dementia* or Lewy Bodies or Lewy Body Disease or lewy bod* or senil*; and burden or coping or stress, physiological or stress* or anxiety disorders or anxiety or anxi* or depress* or burnout or hardiness or hopeless* or distress* or self-efficacy or self efficac* or resilience, psychological or resilien* or social support or psychosocial factor* or psychological complication* or empower*. There were no restrictions of publication dates placed on the search.

Eligibility Criteria. Several eligibility criteria were used to identify relevant articles. Inclusion criteria were (a) intervention research targeting informal caregivers of noninstitutionalized adults with dementia; (b) research conducted in a community-based setting (e.g., primary care, specialty care, home); (c) interventions aimed at providing caregiver support or education; (d) research involving an experimental or quasi-experimental design; (e) interventions with at least 50% technology component (e.g., telephone, video, internet, smartphone); (f) research that assessed caregiver outcomes (e.g., depression, burden, knowledge, self-efficacy); (g) research articles written in English; and (h) studies published in peer-reviewed journals. The review did not restrict research by geographic area. In addition, the decision was made to include articles that did not specify rural/urban characteristics of the sample so that the current research team could assess the extent to which other researchers identified this characteristic as a relevant variable. Articles were excluded if they: (a) did not focus on dementia or informal dementia caregivers; (b) involved an institutional setting; (c) were not intervention studies; (d) had outcome assessments not in inclusion criteria; (e) involved research in which the main intervention component was not technology-based; or (f) were not published in peer-reviewed journals.

Study Selection. After generating an initial search result, Covidence removed duplicates from the list. Following this, two authors (J.L., M.S.) reviewed the titles and abstracts of studies, removing those that did not meet selection criteria. Three authors (N.R., E.L.B., J.L.) reviewed the full text of the remaining articles and removed articles that did not meet search criteria.

Appraisal of Studies

Three authors (N.R., E.L.B., J.L.) were involved with appraising the included studies, and each study was assessed by at least two authors. The research team graded the quality of studies using the Johns Hopkins Nursing Evidence-Based Practice: Model and Guidelines (Newhouse, Dearholt, Poe, Pugh, & White, 2007), in which studies were categorized as randomized controlled trials (RCTs) (I) or quasi-experimental (II). To assess the quality of studies, the research team evaluated characteristics of each study, such as reported attrition, power analysis, and properties of measures used. Before starting the review, a set of assessment criteria based on the research questions was established for the studies and included: (a) geography of participants, in which researchers identified the location of the study and/or distinction of rural/urban status of participants; (b) technology intervention context, which included an appraisal of the type of intervention (i.e., therapeutic, education, support group) and technological platform (e.g., video, internet, video conferencing) used; (c) study design; and (d) outcomes observed. To give the full context of the state of research, the team assessed all studies, but only assessed RCTs when evaluating the outcomes observed.

Results

The initial search resulted in 8,348 studies after duplicates were removed. After review of the title and abstracts of these studies, a total of 8,287 were deemed irrelevant based on inclusion and exclusion criteria. After full-text review of the remaining 61 studies, an additional 31 studies were excluded and 30 studies were retained for analysis. The process for searching and excluding studies is summarized in the Figure. The studies ranged in dates from 1990 to 2016. Detailed information on the reviewed studies can be found in Table A (available in the online version of this article).

Search process for systematic review. Adapted from Moher et al. (2009).

Figure.

Search process for systematic review. Adapted from Moher et al. (2009).

Assessment of Included StudiesAssessment of Included StudiesAssessment of Included StudiesAssessment of Included StudiesAssessment of Included StudiesAssessment of Included StudiesAssessment of Included Studies

Table A:

Assessment of Included Studies

Study Designs

Most studies (n = 21, 70%) were RCTs in which participants were assigned to either the intervention or control/comparison group. An additional four (13.3%) studies were control trials with partial randomization of participants. Sample sizes of control trials ranged from 33 to 299 participants. An additional seven (23.3%) studies involved quasi-experimental designs that included single-group investigations, most of which were labeled as pilot studies and had sample sizes ranging from five to 113 participants. In terms of intervention period, studies ranged from 30 days (n = 1, 3.3%) to 18 months (n = 1, 3.3%). The most common intervention period was 6 months (n = 10, 33.3%), followed by a tie between 12 months and 3 months (n = 4, 13.3% for each). Approximately one half (n = 14, 46.7%) of studies had an intervention period <6 months. One (3.3%) study reported intervention period as number of sessions rather than time period.

Types of Interventions and Technology Platforms

Among the studies, technology was developed and tested for myriad purposes, including: support or discussion groups (n = 13, 44.3%), education or training (n = 12, 40%), therapeutic or emotional support (n = 9, 30%), connecting caregivers with health professionals for advice and support (n = 3, 10%), stress or health self-monitoring (n = 2, 6.7%), and physical exercise (n = 1, 3.3%). Several interventions (n = 9, 30%) involved multifunctional or multicomponent technologies.

Types of technologies used to facilitate dementia caregiver interventions varied in sophistication and scope. Technological platforms included: basic telephone (i.e., landline or mobile; n = 15, 50%), web- or video-based conferencing and networking (n = 8, 26.7%), websites (n = 3, 10%), videophones (n = 2, 6.7%), and videos (n = 2, 6.7%). In terms of how technologies changed over time, it was found that telephone-based interventions have been used since the 1990s (three studies in the 1990s, five in the 2000s, and seven in the 2010s), as have web-based interventions (two studies in the 1990s, two in the 2000s, and three in the 2010s). Computer/videophone technologies emerged in the early 2000s (two in the 2000s and one in the 2010s). In the 2010s, two studies evaluated video-based trainings and one was computer-based.

Geography and Inclusion of Rural Participants

Most studies (n = 17, 56.7%) involved samples located within the United States, with other studies involving samples in Germany (n = 3, 10%), China (n = 2, 6.7%), Canada (n = 1, 3.3%), the Netherlands (n = 1, 3.3%), and Norway (n = 1, 3.3%), as well as one (3.3%) multinational (i.e., United Kingdom, Spain, Greece) study. Among studies conducted in the United States, many (n = 9, 30%) reported recruiting samples within specific cities, such as Birmingham, Alabama; Durham, North Carolina; Indianapolis, Indiana; and Miami, Florida. Other studies (n = 9, 30%) recruited from larger regions, including statewide and multi-state studies. Four (13.3%) studies did not specify the geography of participants.

Among studies, only three (10%) studies specifically identified that their sample included caregivers who resided in rural communities. These studies included one study conducted in Canada, which included all rural participants, and two other studies, one in Norway and one in the New England region of the United States, both of which reported that some participants were rural. Aside from the study that indicated its entire sample was rural, no other studies specifically identified the number or proportion of their samples that were rural caregivers or examined outcomes specifically for rural-dwelling participants. The remaining studies did not identify rural/urban community setting as a relevant variable. In addition, no studies identified whether the individual receiving care was located in a rural area.

Study Findings

Overall, 18 studies were categorized as I (i.e., RCT). Among these studies, interventions tested included: nine telephone-based interventions; five web-based interventions; three videophone interventions; and one DVD-based intervention. Only five studies reported that the intervention resulted in a decrease in depression for the experimental group. Interventions in these studies included: a telephone-based scheduling support program (Au, 2015); a web-based video education program (Beauchamp, Irvine, Seeley, & Johnson, 2005); a web-based coaching program (Blom, Zarit, Groot Zwaaftink, Cuijpers, & Pot, 2015); a telephone-based psychoeducational program (Tremont et al., 2015); and a telephone-based therapy program (Wilz & Soellner, 2016). It should be noted that in the study by Wilz and Soellner (2016), there was no change in depression immediately after the intervention period ended, but the intervention group reported a decline in depression at 6-month follow up after the intervention. Studies by Blom et al. (2015) and Beauchamp et al. (2005) were the only studies that reported a decrease in anxiety among the intervention group. Studies by Au (2015) and Beauchamp et al. (2005) had 1-month intervention periods, the study by Wilz and Soellner (2016) had a 3-month intervention period, and studies by Blom et al. (2015) and Tremont et al. (2015) had 6-month intervention periods. The study by Beauchamp et al. (2005) was the only one to report a dose–response analysis, and determined that longer periods of watching web-based education videos resulted in greater outcomes.

Other psychosocial outcomes were reported. Studies by Goodman (1990) and Goodman and Pynoos (1990) reported that a 3- and 6-month telephone networking intervention resulted in increased perceived social support. The DVD-based training program by Gallagher-Thompson et al. (2010) and videophone-based training intervention by Czaja, Loewenstein, Schulz, Nair, and Perdomo (2013) resulted in a decrease in bother among the intervention group. Kajiyama et al. (2013) reported in a study on a 3-month web-based training program that the intervention group reported a decrease in perceived stress. None of the 18 studies reported any effects on caregiving self-efficacy or caregiving skills.

Nine studies reported effect sizes, with the only large effect examined in the study by Williams et al. (2010) on a video-based training program, which resulted in a decrease in perceived stress among the intervention group, with an effect size of d = 0.90. However, it should be noted that this study was quasi-experimental (II). All other effect sizes reported in studies were small to moderate.

In terms of evidence of technology-based interventions among rural caregivers, only one study that was graded as a I or II included rural participants (Mahoney, Tarlow, & Jones, 2003). Mahoney et al. (2003) reported that participants with lower levels of caregiver mastery at baseline reported decreases in stress after using a videophone intervention for 12 months. However, the study did not report how outcomes were different between rural and non-rural participants.

Discussion

The current systematic review identified and assessed intervention studies involving technologies aimed at educating and supporting caregivers, with a specific focus on studies that reported caregivers' psychosocial-and caregiving efficacy–related outcomes. To date, most technologies that have reached the trial stage of development and target dementia caregivers have focused on telephone-based interventions, with fewer focusing on more technologically advanced platforms, such as internet-based, video teleconferencing, or smartphone/tablet technologies. It is also noteworthy that no studies focused on testing smartphone technologies, given that the percentage of older adults who report owning a smartphone increased from 18% in 2013 to 42% in 2016 (Anderson & Perrin, 2017). However, as the current review assessed only intervention studies and studies published in English, it may be assumed that more advanced technologies have been developed for dementia caregiving education and/or support, but have not yet reached the trial stage of testing.

Lack of Focus on Rural Caregivers

One aim of the current review was to assess the extent to which technology-based interventions have been tested with caregivers in rural settings. However, appraisal of included studies found that there has been limited examination of dementia caregivers' experiences of such interventions in rural settings. Only one study reported that its entire sample was located in rural communities (Marziali, Donahue, & Crossin, 2005). However, Marziali et al. (2005) used a small sample and reported mostly qualitative findings, so the efficacy of using technology to support rural dementia caregivers is still unclear. Other studies reported that rural caregivers were included in their sample or suggested that part of their sample lived in rural settings, such as the study by Williams et al. (2010), which reported that its sample resided within a 150-mile radius of Durham, North Carolina, which would most likely include rural caregivers. Other studies were conducted in small cities surrounded by rural areas, such as Birmingham, Alabama; Durham, North Carolina; Indianapolis, Indiana; and Memphis, Tennessee (Austrom et al., 2015; Brennan, Moore, & Smyth, 1995; Davis, 1998; Davis, Burgio, Buckwalter, & Weaver, 2004; Martindale-Adams, Nichols, Burns, Graney, & Zuber, 2013). It could be assumed that these samples also included rural-dwelling participants, although rurality of samples was not identified and did not examine how rural caregivers' experiences or outcomes differed from those who lived in suburban or urban settings. In a study by Tremont et al. (2015) conducted in Providence, Rhode Island, authors indicated that the intervention they tested would be beneficial for rural caregivers, but did not report whether any of the sample was from rural communities. By not identifying rural/urban dwelling as a relevant variable in studies, researchers fail to assess the extent to which technology-based interventions are effective among a vulnerable caregiving population that has been identified in the literature as potentially benefiting from such interventions.

Success adopting and implementing telehealth interventions for chronic disease management among rural patients suggests that technology-based interventions for dementia caregiving can be feasible and acceptable for rural caregivers (Azad, Amos, Milne, & Power, 2012; Morgan et al., 2011; O'Connell et al., 2014). However, more research is needed on how to develop and/or adapt technologies to effectively support and educate rural caregivers, especially in the United States. There is particular need for research on how dementia-focused technologies can be used as an adjunct to primary care, given the documented shortage of geriatric psychiatrists and neurologists (Lee et al., 2010). Specifically, intervention studies should include rural and non-rural populations to assess experiences and outcomes in consideration of geographic disparities and barriers to technology use.

Need for Understanding Dosage

Other observations from the current systematic review are that most studies had intervention periods of ≤6 months and that little is known about the dosage of technology-based interventions needed for effectiveness. Among the RCT studies, only one reported a dose analysis, with others reporting decreases in depression and/or anxiety with intervention periods that were 1, 3, and 6 months. This finding is interesting because average individuals 65 and older with dementia live 4 to 8 (and up to 20) years after diagnosis, and 54% of dementia caregivers provide care to someone with dementia for ≥2 years (Alzheimer's Association, 2017). Hence, more information is needed on long-term use of technologies among caregivers and the extent to which such technologies are sustainable. For instance, a lack of knowledge exists about how dementia caregivers' technological needs may change as their care recipients' dementia progresses. In terms of dosage, research should aim to understand the amount of technology use needed for efficacy and the extent to which learning to use a technology-based intervention may create additional burden for caregivers.

Psychosocial Outcomes Versus Caregiving Skills

Although many studies reported having positive effects on dementia caregivers' psychosocial outcomes, only four of the RCT studies reported that the intervention resulted in decreased depression and/or anxiety, and none reported an increase in dementia caregiving skills or caregiving self-efficacy. Further research should examine how technologies can effectively improve caregiving, such as educating caregivers on how to perform regular tasks, providing decisional support, and/or addressing specific needs of caregivers, such as support and education for end-of-life care, communication with providers, and assistance with supporting care recipients with activities of daily living. Such research is particularly important for dementia caregivers in rural settings, given that they may have difficulty in accessing services to support their day-to-day caregiving needs.

Limitations

The current systematic review has limitations that should be identified. As mentioned, the search criteria placed limitations on the studies identified. In addition, the main purpose of this review was to identify the extent to which technology-based interventions target rural dementia caregivers. Hence, other important features of the included studies (e.g., risk of bias, quality of methodologies) were not examined. However, the authors took several measures to increase the quality of the review, including having multiple reviewers in the exclusion and appraisal stages of review and use of systematic review software to organize the review process.

Conclusion

Dementia caregivers in rural settings experience myriad challenges to providing ongoing care to individuals with dementia living in the community, and lack of support can result in numerous physical and mental health problems. Although technology has been identified as a way of supporting dementia care and caregiving in rural communities, limited research exists on the effectiveness of technology-based dementia caregiving interventions in these communities. More research needs to assess the feasibility of integrating technology into dementia caregiving in disadvantaged communities so that researchers can identify barriers to and opportunities for improving the quality of life of rural dementia caregivers and the individuals for whom they provide care.

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Assessment of Included Studies

Study and Quality RatingSample GeographyaTechnology InterventionStudy DesignOutcomesb,c (With effect sizes when available)
Au (2015) IIHong Kong, Chinaa4 weekly telephone-based psychoeducation (PsyED), with and without telephone-based behavioral activation (BA).Control trial with 96 ADRD caregivers who all received PsyED intervention, then were randomly assigned to intervention group (BA) or discussion-based control group with a 4-month intervention period. Final post-assessment was completed within 1 week of completing intervention. Attrition rate was 3.9% intervention, 2.2% control. No power analysis for sample size reported. Measurement properties provided.Intervention group reported decrease in depression; no change in self-efficacy.
Au, Wong, Leung, Leung, & Wong, (2014) IHong Kong, ChinaaTelephone-assisted pleasant event scheduling (TAPES) involving two calls per week.Control trial with 60 ADRD caregivers who were randomly assigned to intervention or usual care control group with a 6 week intervention period. Post-assessment completed at 1 month after intervention. Attrition rate of 0%. No power analysis for sample size reported. Measurement properties provided.Intervention group reported decrease in depression; no change in self-efficacy.
Austrom et al. (2015) IIIndianapolis, INaWeb-based video conferencing support group.Pilot study with 5 ADRD caregivers who received intervention with a 6-month intervention period.Sample too small to assess quantitative outcomes; qualitative feedback.
Bass, McClendon, Brennan, & McCarthy (1998) IUnspecifiedaComputerLink web-based program that includes discussion forum, messaging component, interaction with nurses, and educational information.Control trial with 102 ADRD caregivers who were randomly assigned to intervention or control with a 12-month intervention period. Post-assessment completed immediately after intervention period ended. Attrition rate was 7.8% intervention, 3.9% control. No power analysis for sample size reported. Measurement properties provided.Decrease in caregiver strain only for participants in intervention group with greater use of intervention and with higher levels of strain at baseline.
Beauchamp et al. (2005) INational samplea with focus groups in Oakland, CA; Washington, DC; Portland, OR; San Diego, CA; Tampa, FLCaregiver's Friend: Dealing With Dementia, a Web-based multimedia intervention that provides text material and videos that model positive caregiving strategies.Control trial with 299 employed ADRD caregivers who were randomly assigned to intervention or waitlist control with a 30 day intervention period. Post-assessment completed immediately after intervention period ended. Overall attrition reported as 2.6%. No power analysis for sample size reported. Measurement properties provided.Intervention group reported decrease in depression (η2= 0.02), anxiety (η2= 0.02), stress (η2= 0.05), and strain (η2= 0.02); increase in caregiver gain (η2= 0.02); no change in coping skills.
Blom et al. (2015) IThe NetherlandsaMastery over Dementia, a web-based education and coaching program.Control trial with 251 ADRD caregivers who were stratified by age and relationship to care recipient, then randomly assigned to intervention or comparison intervention group with an 8-lesson intervention (completed over 5 to 6 months). Post- assessment completed immediately after intervention ended. Attrition rate was 39.5% intervention, 11.5% control. No power analysis for sample size reported. Measurement properties provided.Intervention group reported decrease in depression (d= 0.26) and anxiety (d= 0.13). Researchers noted that a limitation was that the sample had a higher level of education than the general public.
Bormann et al. (2009) IISouthern CaliforniaaTelephone-based therapeutic and mantram repetition program.Pilot study with 16 caregivers of Veterans with ADRD and an 8-week intervention period.Participants report high satisfaction; decreases in burden, perceived stress, depression, rumination; no change in trait anger. However, sample is too small to determine efficacy.
Brennan et al. (1995) ICleveland, OHaComputerLink web-based program that includes discussion forum, messaging component, interaction with nurses, and educational information. Participants received a computer in home.Control trial with 102 ADRD caregivers who were randomly assigned to intervention or control with a 12-month intervention period. Post-assessment completed immediately after intervention ended. Attrition rate was 7.8% intervention, 3.9% control. No power analysis for sample size reported. Measurement properties provided.Intervention group reported increase in confidence in decision making; no change in decision making skills, perceived social isolation, and technology usage; no clinical outcomes measured.
Connell & Janevic (2009) IMichigan and OhioaHealth First, a telephone-based exercise program.Control trial with 137 ADRD caregivers who were randomly assigned to intervention or control with a 6 month intervention period. Post-assessments completed immediately after intervention ended and approximately 6 months after the intervention period ended (12 months from baseline). Attrition rate at 6 months: 15.1% intervention, 9.8% control. Attrition rate at 12 months: 19.8% intervention, 12.7% control. No power analysis for sample size reported. Measurement properties provided.At 6-month follow up: Intervention group reported increase in amount of exercise (d = 0.15), self-efficacy for exercise (d= 0.04); no change in self-efficacy for self-care, depression, perceived stress, caregiver burden. At 12-month follow up, only self-efficacy for exercise was significantly increased for intervention group (d = 0.05).
Czaja et al. (2013) IMiamiaEducation and skills training delivered through Videophone platform.Control trial with 110 ADRD caregivers who were randomly assigned to intervention, attention control, or information-only control, with a 5-month intervention period. Post-assessment completed immediately after intervention ended. Attrition rate was 21.1% intervention, 5.5% attention, 19.4% control. No power analysis for sample size reported. Measurement properties provided.Intervention group reported decrease in RMBPCd unconditional bother; increase in positive aspects of caregiving and satisfaction with support; no change in depression, negative interactions/support, or received social support.
Dang et al. (2008) IIMiamiaTelephone-Lined Care (TLC), a communication, education, monitoring, and support program delivered through a videophone.Single group quasi-experimental pilot study with 113 ADRD caregivers of home-dwelling Veterans with a 12-month intervention period. Post- assessment completed immediately after intervention ended. Attrition rate was 53.1%. No power analysis for sample size reported. Measurement properties provided.Participants reported moderate to high satisfaction with aspects of program; decrease in burden for African American and White participants; no change in burden for Hispanic participants, depression, brief cope, health, resource assessment, or caregiver knowledge.
Davis (1998) IIBirmingham, ALaA telephone-based education program for ADRD caregiving.Single-group quasi-experimental pilot study with 17 ADRD caregivers and a 2-week intervention period.Decrease in depression; increase in life satisfaction and use of social support; no change in problem solving or reactions to patient's ADRD symptoms; however, sample was too small to determine efficacy of the intervention.
Davis et al. (2004) IBirmingham, ALaA skills training program that was offered in-person and through a telephone format for ADRD caregiving.Control trial with 71 caregiver–care recipient dyads who were randomized to intervention (in-person or telephone) or comparison treatment groups with a 12-month intervention period. Post-assessments completed immediately after intervention ended and 12 months after intervention ended. Attrition rate was 25.0% in-person, 56.5% telephone, 33.3% comparison. No power analysis for sample size reported. Measurement properties provided.Participants in all three groups had similar outcomes: decrease in burden; no change in depression, perceived social support, or life satisfaction. Only in-person group experienced decrease in caregiver distress (d = 0.47).
Finkel et al. (2007) IMiami, FLaComputer telephone integration system (CTIS) that offers discussion groups, messaging, communication education, and resources.Pilot study involving a control trial with 46 ADRD caregivers who were randomly assigned to intervention or information-only control with a 6-month intervention period. Post-assessment completed immediately after intervention period ended. Attrition rate: 26.1% intervention, 17.4% control. No power analysis for sample size reported. Measurement properties provided.No treatment effects were found, although higher baseline of depression and burden were associated with significant change for intervention group.
Gallagher-Thompson et al. (2010) ISan Francisco Bay Area, CAaSkill-building DVD program with accompanying workbook designed for Chinese ADRD caregivers.Control trial with 76 Chinese ADRD caregivers who were randomly assigned to the intervention or education-video comparison group for a 12 to 16 week intervention period. Post-assessment completed immediately after intervention period ended. Attrition rate: 10.0% intervention, 5.6% comparison. No power analysis for sample size reported. Measurement properties provided.Intervention group reported decrease in RMBPC caregiver bother (d= 0.51); no change in depression.
Goodman (1990) IUnspecifiedaCareline, a telephone-based network of ADRD caregivers.Control trial with 40 ADRD caregivers who were randomly assigned to intervention or lecture-only control with a 6-month intervention period. Post- assessment completed immediately after intervention period ended. Attrition rate of each group not provided. No power analysis for sample size reported. Measurement properties provided.Intervention group reported increase in social support and burden. Researcher indicated that there were short-term benefits that were lost at final follow up.
Goodman & Pynoos (1990) IUnspecifiedaCareline, a telephone-based network of ADRD caregivers.Control trial with 66 ADRD caregivers who were stratified by relationship with ADRD patient and then randomly assigned to the intervention (n= 31) or lecture-only comparison group (n= 35) for a 12-week intervention period. Post-assessment completed immediately after intervention period ended. Attrition rate was 18.4% intervention, 18.6% control. No power analysis for sample size reported. Measurement properties provided.Intervention group reported increase in perceived social support, knowledge about ADRD; no change in caregiver burden or actual contact with social support.
Kajiyama et al. (2013) ICaliforniaaiCare, an internet-based stress management training program.Control trail with 150 ADRD caregivers who were randomly assigned to intervention or education/information only control with a 3-month intervention period. Post-assessment completed immediately after intervention period ended. Attrition rate was 24.0% intervention, 38.7% control. No power analysis for sample size reported. Measurement properties provided.Intervention group reported decrease in perceived stress (η2p = 0.02).
Mahoney et al. (2003) IEastern Massachusetts; southern New Hampshire; and northern Rhode Island. Some participants were labeled as rural (although exact number of rural participants was not specified).A computer-mediated telecommunications system for ADRD caregivers that includes stress monitoring, counseling, information, connection with ADRD experts, and telephone support group.Control trial with 100 ADRD caregivers who were randomly assigned to the intervention or a comparable group receiving usual care with a 12-month intervention period. Study was a sub-investigation from REACH I. Post-assessments completed immediately after intervention period ended and 6 months after the intervention period ended. Attrition rate at 12 months: 42.8% intervention, 37.2% control. Attrition rate at 18 months: 55.1% intervention, 54.9% control. No power analysis for sample size reported. Measurement properties provided.Overall, the primary hypothesis examining an overall reduction of caregiver stress, RMBPC, depression, or state anxiety was not supported. For participants with low-mid caregiver mastery at baseline who also reported decrease in stress and depression, there was no change in stress, except for participants with low levels of caregiver mastery at baseline and for caregivers who were wives of the ADRD care recipient. Intervention participants who were also the wives of the care recipient reported decreases in bother. The researchers indicated that there was greater use of the intervention by participants in rural areas.
Martindale-Adams et al. (2013) IMemphis, TNaCONNECT, a telephone-based support group for caregivers of Veterans with ADRD.Control trial with 154 ADRD caregivers who were randomly assigned to intervention or information-only control with a 14-month intervention period. Post-assessment completed immediately after intervention period ended. Attrition rate was 16.9% intervention, 15.6% control. Power set at 0.80, α = 0.05. Measurement properties provided.Intervention group reported no change in burden, bother, depression, or well-being.
Marziali et al. (2005) IIRural communities in northern Ontario and Southern Alberta, CanadaCaring for Others, an online support group for ADRD caregivers.Pilot study with 34 caregivers with no control group for 5.5 month intervention period.Qualitative outcomes reported that indicated caregivers found the intervention to be emotionally supportive.
Schinköthe, Altmann, & Wilz (2015) IIJena, GermanyaA telephone-based therapy program.Pilot study with 43 ADRD caregivers with no control group. With a 3-month intervention period. Evaluation of a subsample from a larger study. No power analysis for sample size reported. Measurement properties provided.Decrease in burden and fatigue; however, the sample was too small to determine efficacy. Also, outcomes were associated with the competency of the therapists who administered the program
Torkamani et al. (2014) ILondon, UK; Badalona, Spain; and Athens, GreeceaALLADIN, a computer-based platform that provides education, social networking, care recipient assessments, and alert system to contact provider.Control trial with 60 ADRD caregivers who were randomly assigned to intervention or control with a 6-month intervention period. No attrition reported. No power analysis for sample size reported. Measurement properties provided.Intervention group reported greater decreases in burden, no significant difference in distress, and increase in quality of life. However, sample size was too small to determine efficacy.
Torp, Hanson, Hauge, Ulstein, & Magnusson (2008) IIRural and urban areas of eastern NorwayAssisting Carers using Telematics Interventions to meet Older Persons' Needs (ACTION), a communication technology that provides information, online discussion forum with other ADRD caregivers, and connection with ADRD experts. Participants were given a 3- week course on using the intervention to support those with low computer literacy.A pilot study with 19 ADRD caregivers with no control group and a 6-month intervention period. No power analysis for sample size conducted. Measurement properties provided.Increase in social support and social contact; decrease in need for knowledge; no change in burden or mental health problems; however, sample size was too small to determine efficacy.
Tremont et al. (2015) IProvidence, RIaFamily Intervention: Telephone Tracking—Caregiver (FITT-C), a psychoeducational program delivered by telephone.Control trial with 250 ADRD caregivers who were randomly assigned to the intervention or a control group receiving telephone support with a 6-month intervention period. Post-assessment completed immediately after intervention period ended. Overall attrition reported as 15%. No power analysis for sample size reported. Measurement properties provided.Intervention group reported no change in depression, burden, bother, health-related quality of life, family functioning, or self-efficacy.
Tremont, Davis, Bishop, & Fortinsky (2008) ISouthern New England, USAaFamily Intervention: Telephone Tracking—Caregiver (FITT-C), a psychoeducational program delivered by telephone.Pilot study for intervention reported in Tremont et al. (2015). Control trial with 33 ADRD caregivers who were randomly assigned to the intervention or a control group receiving usual care with a 6-month intervention period. Post-assessment completed immediately after intervention period ended. No power analysis for sample size reported. Measurement properties provided.Intervention group reported decrease in burden and reactions to care recipient behavioral problems. However, sample size was too small to determine efficacy.
Williams et al. (2010) IIDurham, NCaVideo-based coping skills training and telephone follow ups.Control trial with 116 ADRD caregivers who were alternately assigned to intervention or wait list control with a 5-week intervention period. Post-assessment completed at 6-month follow up. Overall attrition reported as 18.1%.No power analysis for sample size reported. Measurement properties provided.Intervention group reported decreases in depression (d= 0.63), trait anxiety (d= 0.64), perceived stress (d= 0.90); no change in state anxiety, anger, hostility, sleep disturbance, self-efficacy, blood pressure, heart rate, or cortisol levels.
Wilz, Meichsner, & Soellner (2017)eIIBerlin, GermanyaTeleTAnDem, a telephone-based therapeutic program.Study reports 2-year follow up from a subsample of a larger study. Control trial with 105 caregivers who were partially randomized to intervention or a control group receiving usual care with a 3-month intervention period. Post-assessment completed at 24-month follow up. Attrition rate not reported. No power analysis for sample size reported. Measurement properties provided.At 2-year follow-up, intervention group reported better health status and quality of life, increase in emotional well-being compared to control group (η2p= 0.053).
Wilz & Soellner (2016) IBerlin/Bradenburg, Germany; Thuringia, GermanyaTeleTAnDem, a telephone-based therapeutic program.Control trial with 153 ADRD caregivers who were assigned to one of three groups through stratified randomization: intervention group, alternative treatment comparison group, or no treatment group. There was a 3-month intervention period. Post-assessment completed immediately after intervention period ended and 6 months after the intervention period ended. Overall attrition rate was 16.2%. Power set at 0.80, α = 0.05. Measurement properties provided.Post-intervention, increases in emotional wellbeing (η2p= 0.08, d = 0.58) and global measure of health (η2p= 0.04, d = 0.39); decrease in exhaustion (η2p= 0.04, d = 0.41); no change in depression or physical ailments. At 6-month follow up, decrease in depression (η2p= 0.04, d= 0.39).
Winter & Gitlin (2007) IUnidentifiedaTelephone-based emotional support group.Control trial with 103 female ADRD caregivers who were randomly assigned to intervention or usual care control with a 6-month intervention period. No attrition reported. Power set at 0.80, for an effect size of 0.70. Measurement properties provided.No intervention effects except for older participants, who reported decrease in depression.
Authors

Dr. Ruggiano is Associate Professor, School of Social Work, University of Alabama, Tuscaloosa, Alabama; and Dr. Brown is Associate Professor, Ms. Li is PhD Student, and Dr. Scaccianoce is Clinical Assistant Professor, Nicole Wertheim College of Nursing and Health Sciences, Florida International University, Miami, Florida.

The authors have disclosed no potential conflicts of interest, financial or otherwise.

Address correspondence to Nicole Ruggiano, PhD, MSW, Associate Professor, School of Social Work, University of Alabama, Box 870314, Tuscaloosa, AL 35487-0314; e-mail: nruggiano@ua.edu.

Received: September 28, 2017
Accepted: April 17, 2018

10.3928/19404921-20180628-04

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