Translation of a dementia caregiver support program in a health care system--REACH VA. Evaluation of a Telephone-Based Support Group Intervention for Female Caregivers of Community-Dwelling Individuals With Dementia Feasibility and effectiveness of a telephone-based social support intervention for informal caregivers of people with dementia: Study protocol of the TALKING TIME project A videophone psychosocial intervention for dementia caregivers. The effect of telephone support groups on costs of care for veterans with dementia. Enhancing the Quality of Life of Dementia Caregivers from Different Ethnic or Racial Groups Dementia Caregivers’ Responses to 2 Internet-Based Intervention Programs A trial of dementia caregiver telephone support. The cost-effectiveness of a behavior intervention with caregivers of patients with Alzheimer's disease. Identifying Unmet Needs of Family Dementia Caregivers: Results of the Baseline Assessment of a Cluster-Randomized Controlled Intervention Trial The use of Internet technology for psychoeducation and support with dementia caregivers.
BACKGROUND Based on the National Institute on Aging/National Institute of Nursing Research Re sources for Enhancing Alzheimer 's Caregiver Health ( REACH ) r and omized controlled trial ( REACH II ) , REACH VA ( Department of Veterans Affairs ) was the first national clinical translation of a proven behavioral intervention for dementia caregivers , running from September 2007 through August 2009 . This article describes the population and outcomes of the REACH VA translation of REACH II into the VA . METHODS Clinical staff members from 24 VA Medical Center Home-Based Primary Care programs in 15 states delivered the intervention to stressed caregivers of patients with dementia . Like REACH II , the 6-month REACH VA intervention , structured through a protocol and individualized through a risk assessment , targeted education , support , and skills training to address caregiving risk areas of safety , social support , problem behaviors , depression , and health through 12 individual in-home and telephone sessions and 5 telephone support group sessions . Staff members of the Memphis VA Medical Center , Memphis , Tennessee , collected data on burden , depression , health and healthy behaviors , caregiving frustrations , social support , dementia-related behaviors , and time spent providing care and on duty . RESULTS From baseline to 6 months , caregivers reported significantly decreased burden , depression , impact of depression on daily life , caregiving frustrations , and number of troubling dementia-related behaviors . A 2-hour decrease in hours per day on duty approached significance . Caregivers ( 96 % ) believed that the program should be provided by the VA to caregivers . CONCLUSIONS This clinical translation achieved outcomes similar to the REACH II r and omized controlled trial , providing clinical ly significant benefits for caregivers of a veteran with a progressive dementing disease . This model of caregiver support can inform public policy in providing assistance to caregivers Family caregivers , the “ second victims ” or hidden patients in dementia care , are at risk for social isolation , stress , depression , and mortality . Telephone-based support ( telesupport groups ) represents a practical , low-burden , low-cost source of emotional support . The present study evaluated the feasibility and effectiveness of professionally led telephone-based support groups for female family caregivers of community-dwelling dementia patients . Recruited through various community sources , 103 female caregivers were r and omized to the telesupport group treatment or a control condition . Effects on caregiver burden , depression , and personal gains were evaluated at 6 months , the main end point . Older care-givers ( ≥65 ) in telesupport  reported lower depression than control group caregivers did Background Caring for people with dementia at home requires a significant amount of time , organization , and commitment . Therefore , informal caregivers , mainly relatives , of people with dementia often feel a high burden . Although on-site support groups are known to have positive effects on the subjective well-being ( SWB ) and perceived social support of informal caregivers , there are cases in which relatives have either no time or no opportunity to leave the person alone or in which there are no support groups nearby . The TALKING TIME project aims to close this supply gap by providing structured telephone-based support groups in Germany for the first time . International studies have shown benefits for informal caregivers . Methods The TALKING TIME study is a r and omized controlled trial . The effects of the 3-month TALKING TIME intervention will be compared with those of a control group without intervention at two time points ( baseline = T0 , after 3 months = T1 ) . The control group will receive the TALKING TIME intervention after T1 . With a planned sample size of 88 participants , the study is powered to detect an estimated effect size of 0.70 for psychological quality of life , considering an α of 0.05 ( two-sided ) , a power of 80 % . Caregivers are informal caregivers who are eligible if they are 18 years of age or older and have cared for a person with diagnosed dementia for at least four hours , four days per week , in the past six months . The exclusion criteria are psychiatric disorders of the informal caregiver . The primary outcome is the mental component summary of the SF-12 rated by informal caregivers . The secondary outcomes for informal caregivers are the physical component summary of the SF-12 , the Perceived Social Support Caregiver Scale ( SSCS ) score , and the Caregiver Reaction Scale ( CRS ) score . The secondary outcome for care recipients is the Neuropsychiatric Inventory ( NPI-Q ) . For the process evaluation , different quantitative and qualitative data sources will be collected to address reach , fidelity , dosage and context . Discussion The results will provide further information on the effectiveness and optimization of telephone-based support groups for informal caregivers of people with dementia , which can help guide the further development of effective telephone-based social support group interventions .Trial registration Clinical Trials : NCT02806583 , June 9 , BACKGROUND / OBJECTIVES Available services and intervention programs for dementia caregivers are often underutilized because of issues such as cost , logistics , lack of knowledge about available services , or insufficient support from others . Information technologies offer the potential of removing these barriers and facilitating the ability of caregivers to access needed support . This project evaluated the feasibility and efficacy of technology-based psychosocial intervention among minority family caregivers of dementia patients . DESIGN A feasibility and efficacy trial . SETTING Participants ' homes in the Greater Miami Community . PARTICIPANTS One hundred ten ( 56 Hispanic American and 54 African American ) caregivers of patients with dementia . INTERVENTION A technology-based multi-component psychosocial intervention was delivered in-home and via videophone technology over 5 months . The intervention was modeled after the REACH II intervention and targeted known areas of caregiver risk . MEASUREMENT St and ardized measures of depression , caregiver burden , social support , and the caregivers ' perception of the caregiver 's experience were administered at baseline and 5 months post-r and omization . RESULTS Overall , caregivers who received the intervention reported a decrease in burden , an increase in perceived social support and positive perceptions of the caregiving experience . No effect was observed for depression . Most participants indicated that the intervention improved their caregiving skills and found the technology to be easy to use . CONCLUSIONS A technology-based format was feasible for delivering a multi-component intervention to minority family dementia caregivers . The intervention improved caregiver outcomes for both Hispanic and African American caregivers . The results suggest that technology may help eliminate disparities in access to caregiver intervention programs PURPOSE Few studies have addressed the effects of  caregiver interventions  on the costs of care for the care recipient . This study evaluated the effects of a caregiver education and support group delivered via the telephone on care recipient health care utilization and cost . DESIGN AND METHODS The Telehealth Education Program ( TEP ) is a manualized program of education and support design ed for caregivers of veterans with moderate-to-severe dementia . One hundred fifty-eight spousal caregivers were r and omly assigned to either the ten 1-hr sessions of TEP or the usual care ( UC ) .  Health care utilization and cost data were extracted from veterans Information System Technology Architecture data bases and included outpatient , inpatient , and nursing home data within the VA . RESULTS Total health care cost data showed a significant ( p = .039 ) average cost savings of $ 2,768 per patient at 6 months for TEP as compared with UC , but these were not maintained at 1 year . All costs included in the total costs measure contributed to this difference . Inpatient , outpatient , and nursing home costs were all assessed separately , but only nursing home costs reached significance ( p = .009 ) , with a savings of $ 1,057 per patient at 6 months . IMPLICATION S The TEP caregiver intervention result ed in short-term cost savings for veteran care recipients . Future studies of caregiver interventions should examine their effects on costs of care for the care recipients in addition to their effects on caregiver outcomes Context Providing care for patients with dementia can pose enormous burdens that may be eased with assistance and support . Needs may differ by race or ethnicity . Contributions The investigators r and omly assigned Hispanic , black , and white dementia caregivers to receive written educational material s or an intensive intervention to improve caregiver quality of life .  The specific interventions were determined by caregivers , were delivered via trained personnel and telephone support groups , and targeted several dimensions of need . The study found that quality of life improved for Hispanic and white caregivers and for black spousal caregivers in the intervention group but not in the control group . The intervention had no detectable effect on the number of care recipients who were institutionalized . Caution s The study used only a single 6-month follow-up assessment , combined heterogeneous cultures and ethnicities into 3 groups , and excluded some ethnicities . Implication s An intensive intervention targeting several dimensions of caregiver need improved caregiver quality of life without an apparent effect on care recipient institutionalization . The effect did not differ by caregiver race or ethnicity . The Editors Caring for a family member with dementia is extremely stressful , contributes to psychiatric and physical illness , and increases the risk for death ( 1 , 2 ) . The accumulating evidence on the personal , social , and health effects of dementia caregiving has generated a broad range of intervention studies , including r and omized trials aim ed at decreasing the burden and stress of caregiving . Several studies have demonstrated statistically significant effects in reducing caregiver burden , lowering caregiver depression , and delaying institutionalization of care recipients ( 1 , 3 , 4 ) through either targeted interventions that treat a specific caregiver problem , such as depression , or broad-based multicomponent interventions that include counseling , case management , and telephone support . Persistent limitations of caregiver intervention research are the paucity of well-controlled r and omized trials , the limited range of outcomes examined , small sample sizes and insufficient power , geographic limitations , inadequate racial or ethnic variation , and a scarcity of comprehensive multicomponent interventions ( 4 ) . Indeed , none of the 41 r and omized clinical trials published in the last 5 years met Consoli date d St and ards of Reporting Trials ( CONSORT ) recommendations for reporting r and omized trials ( 5 ) , and many have serious method ologic problems that call into question the reported findings ( 4 ) . To address these limitations , the National Institute on Aging and the National Institute of Nursing Research funded a multisite research program design ed to develop and test an effective caregiver intervention : the Re sources for Enhancing Alzheimer 's Caregiver Health ( REACH ) study . We performed the study in 2 phases . In the first phase ( REACH I ) , we tested several different interventions at 6 U.S. sites to identify the most promising approaches to decreasing  caregiver burden and depression ( 6 ) . Results from the study showed that active treatments were superior to control conditions in reducing caregiver burden and that active engagement in skills training statistically significantly reduced  caregiver depression ( 7 , 8) . The existing literature and findings from REACH I helped guide the design of the REACH II intervention ( 7 , 8) . We based the REACH II study on the premise that caregivers can have problems in several areas at varying levels of intensity , and thus , interventions must be responsive to variations in needs among caregivers . The findings from REACH I also suggest that interventions that use active techniques , such as role-playing and interactive practice , are more effective at improving outcomes , such as depression symptoms , compared with more passive methods , such as providing information ( 7 ) . We based the REACH II intervention on these assumptions and design ed the intervention to maximize outcomes by systematic ally targeting several problem areas , tailored the intervention to respond to the needs of each individual , and actively engaged the caregiver in the intervention process . We hypothesized that participants assigned to the intervention would do better than those in the control group on several indicators of caregiver quality of life , including depression , burden , self-care , and social support and care recipient problem behaviors , and that these differences would be largest among Hispanic or Latino persons because they have lower access to support services ( 8) . In additional analyses , we assessed the effects of treatment on rates of caregiver clinical depression and care recipient institutional placement , as well as the benefits derived from study participation . Methods Caregivers Eligibility criteria for caregivers included the following : Hispanic or Latino , white or Caucasian , or black or African-American race or ethnicity ; age 21 years or older ; living with or sharing cooking facilities with the care recipient ; providing care for a relative with diagnosed Alzheimer disease or related disorders for at least 4 hours per day for at least the past 6 months ; and reported distress associated with caregiving ( reported at least 2 of the following 6 items at baseline assessment : felt overwhelmed , felt like they often needed to cry , were angry or frustrated , felt they were cut off from family or friends , reported  moderate to high levels of general stress , or felt their health had declined ) . We excluded caregivers who were involved in another caregiver intervention study , who had participated in REACH I , or who had an illness that would prevent 6 months of study participation . Other requirements were logistic , including having a telephone , planning to remain in the geographic area for at least 6 months , and competency in either English or Spanish ( see Appendix Table 1 for a detailed list of exclusions ) . Appendix Table 1 . Reasons for In eligibility Care Recipients To be eligible for the study , caregivers had to confirm that their relative had diagnosed Alzheimer disease or related disorders . In addition , we screened care recipients for a history of severe mental illness , head injury , Parkinson disease , or stroke , and we administered the  MiniMental State Examination ( MMSE )  ( 9 ) . We excluded patients who were bedbound with MMSE scores of 0 because we felt that our intervention had little to offer caregivers who were caring for such patients . Moreover , being bedbound is a risk factor for institutional placement or death , and we sought to exclude caregivers who were likely to transition out of the caregiving role within the 6-month study . For patients who scored more than 23 on the MMSE or had other conditions , such as head injury , we required a physician 's diagnosis of Alzheimer disease or related disorders . Procedures We recruited caregiver and care recipient dyads at 5 sites : Birmingham , Alabama ; Memphis , Tennessee ; Miami , Florida ; Palo Alto , California ; and Philadelphia , Pennsylvania . Enrollment began in June 2002 , and follow-up ended in August 2004 . Recruitment occurred in memory disorder clinics , primary care clinics , social service agencies , physician offices , churches , and community centers and by using professionally design ed brochures , public service announcements on radio stations , newspaper articles , television , targeted newsletters , and community presentations . We translated all intervention material s and assessment instruments into Spanish for the Hispanic or Latino participants by using established techniques for forward- and -back translation and allowing for regional variation in language expression . We used bilingual and bicultural staff at the 3 sites that recruited Hispanic or Latino participants : Palo Alto , Philadelphia , and Miami . At all sites , assessors and interventionists received cultural sensitivity training and were certified before entering the field . Certified assessors were blinded to group assignment of study participants . The institutional review boards of all 5 site institutions and the coordinating center in Pittsburgh , Pennsylvania , approved the study . We obtained written informed consent from all caregivers and from care recipients whenever possible . Caregivers provided consent on behalf of care recipients who could not do so on their own . After telephone screening ( n= 995 ) and baseline assessment ( n= 670 ) , we r and omly assigned participants ( n= 642 ) to the intervention or control group ( Figure ) . We stratified r and omization by using a block size of 2 or 4 within strata defined by the 5 intervention sites , 3 racial or ethnic groups ( Hispanic or Latino , white or Caucasian , and black or African American ) , and 2 caregivercare recipient relationships ( spouse or nonspouse ) . We performed r and omization at the coordinating center by using a computer-generated algorithm and a st and ard protocol for transmitting r and omization information between the coordinating center and the study sites . We administered 1 of 3 follow-up batteries , on the basis of care recipient status at follow-up ( full follow-up , bereavement battery , or placement battery ) , to study participants 6 months after r and omization when the intervention was completed . To maximize the number of individuals who could be included in the outcome analyses , we ensured that the 3 batteries were as similar as possible . We did not ask caregivers about caregiver burden and care recipient functional status if their care recipients had died ; thus , we could not include these caregivers in the primary outcome analysis ( 10 ) . Figure . Study flow diagram . * See Appendix Table 1 for reasons for in eligibility . See Appendix Table 2 ( for reasons for unavailable end points and types of 6-month follow-up . Appendix Table 2 . Reasons for Unavailable End Points and Types of 6-Month Follow-up Trial Groups Intervention The intervention involved a range of strategies : provision of Purpose : The aim of this study was to examine the impact on dementia caregivers ’ experienced stress and health status of 2 Internet-based intervention programs . Design and methods : Ninety-one dementia caregivers were given the choice of being involved in either an Internet-based chat support group or an Internet-based video conferencing support group . Pre-post outcome measures focused on distress , health status , social support , and service utilization . Results : In contrast to the Chat Group , the Video Group showed significantly greater improvement in mental health status . Also , for the Video Group , improvements in self-efficacy , neuroticism , and social support were associated with lower stress response to coping with the care recipient ’s cognitive impairment and decline in function . Implication s : The results show that , of 2 Internet-based intervention programs for dementia caregivers , the video conferencing intervention program was more effective in improving mental health status and improvement in personal characteristics were associated with lower caregiver stress response The purpose of this study was to determine if telephone support groups for dementia caregivers have an effect on bother with patient behaviours , burden , depression , and general well-being . The r and omized controlled trial compared telephone support groups ( 15 groups of 5 or 6 caregivers ) with control groups ( print material s ) . Groups met 14 times over 1 year . The 1-hour sessions included content on education , coping skills , and support . Data were collected at baseline and at 6 and 12 months . The sample comprised 154 caregivers , 77 per arm , providing care to veterans with dementia or a veteran caregiver . Bother was found to differ significantly at baseline . There were no significant treatment effect differences between study arms . Participants anecdotally reported improvement . It was concluded that telephone support groups are an efficient way to interact with caregivers . Further research should test different models of care . Interventions that are targeted to specific needs or occur frequently may provide better support for caregivers of individuals with a worsening condition OBJECTIVES To examine the cost-effectiveness of a r and omized , clinical trial of a home-based intervention for caregivers of people with dementia . DESIGN This cost-effectiveness analysis examined Re sources for Enhancing Alzheimer 's Caregivers Health ( REACH II ) , a multisite , r and omized , clinical trial , from June 2002 through December 2004 , funded by the National Institute on Aging and the National Institute of Nursing Research , of a behavioral intervention to decrease caregivers ' stress and improve management of care recipient behavioral problems . SETTING Community-dwelling dementia caregiving dyads from the Memphis REACH II site . PARTICIPANTS Of Memphis ' r and om sample of 55 intervention and 57 control black and white dyads , 46 in each arm completed without death or discontinuation . Family caregivers were aged 21 and older , lived with the care recipient , and had provided 4 or more hours of care per day for 6 months or longer . Care recipients were cognitively and functionally impaired . INTERVENTION(S ) Twelve individual sessions ( 9 home sessions and 3 telephone sessions ) supplemented by five telephone support-group sessions . Control caregivers received two " check in " phone calls . MEASUREMENTS Incremental cost-effectiveness ratio ( ICER ) , the additional cost to bring about one additional unit of benefit ( hours per day of providing care ) . RESULTS At 6 months , there was a significant difference between intervention caregivers and control caregivers in hours providing care ( P=.01 ) . The ICER showed that intervention caregivers had 1 extra hour per day not spent in caregiving , at a cost of $ 5 per day . CONCLUSION The intervention provided that most scarce of caregiver commodities -- time . The emotional and physical costs of dementia caregiving are enormous , and this intervention was able to alleviate some of that cost BACKGROUND Caregivers providing informal care for people with dementia ( PwD ) often report unmet needs , burden , and health impairments . Optimal support for family dementia caregivers will likely benefit from better underst and ing and assessment of the prevalence and types of caregivers ' unmet needs and associated socio-demographic and clinical characteristics . OBJECTIVE The present study investigates 1 ) the number and types of caregivers ' unmet needs , 2 ) socio-demographic and clinical characteristics of both PwD and caregivers , and 3 )  caregivers ' burden and health-related outcomes that are related to caregivers ' unmet needs . METHODS The present analyses are based on cross-sectional data of n = 226 dyads of caregivers and their community-dwelling PwD participating in a comprehensive st and ardized , computer-based caregivers ' needs assessment within a general practitioner (GP)-based , cluster-r and omized intervention trial . RESULTS A total of n = 505  unmet needs  were identified for n = 171 caregivers from the intervention group at baseline . Only 24.3 % caregivers reported no unmet need ( n = 55 ) , whereas 75.7 % caregivers had at least one unmet need ( n = 171 ) . Caregivers had on average 2.19 unmet needs ( mean = 2.19 , SD = 2.15 ) . Specifically , 53.1 % of caregivers had one up to three unmet needs ( n = 120 ) , 18.6 % ( n = 42 ) had three up to six unmet needs , and 4.0 % ( n = 9 ) had more than six unmet needs . DISCUSSION Our results underline the importance of a comprehensive needs assessment for family dementia caregivers to develop and implement concepts that can provide family dementia caregivers with optimal support A large r and omized trial evaluated the benefits of online education , support , and self-care promotion  for caregivers of persons with dementia . Anecdotal reports from participants indicated enjoyment of the material s , convenient access from home , and support from professionals and other caregivers . A substantial number of screened caregivers experienced obstacles of access , cost , and time regarding use of technology . Telephone options are being explored , and future caregiving generations are expected to have increased exposure and willingness to use computer technology , such as the program described here
Objective : The purpose of this scoping systematic review was to inform virtual support group development for informal caregivers of dementia by identifying published approaches , outcomes , barriers , and facilitators .