Table 1.
Summary of Published Translational Studies of Dementia Caregiver Interventions
| Citation | Name of program | Site of translation | Theory of translation | Study design | Modifications to original intervention | Reach (number of caregivers) | Effectiveness | Sustainability addressed |
|---|---|---|---|---|---|---|---|---|
| 1. REACH II | ||||||||
| Altpeter, Gwyther, Kennedy, Patterson, and Derence (2013) | NC-REACH II | NC (three regions): community setting | RE-AIM | Mixed-methods, mid- course assessment: eight-steps reviewing implementation process | • Streamlined intervention guides and tools | In progress | In progress | NC-REACH II embedded in NC Project C.A.R.E., a comprehensive dementia-specific respite program with AOA demonstration funding |
| Fidelity evaluated and use of REACH II consultant | • Shifted the mandatory weekly coaching sessions to “as needed” | |||||||
| • Reduced number of sessions and length of time | ||||||||
| • More flexibility with timing and delivery of program content | ||||||||
| Burgio et al. (2009) | REACH OUT | AL: AAAs | Not indicated | Single group design, pre- post (4 months) | • Shortened number of sessions from 12 to 4 visits and 3 telephone calls | 272 enrolled with 236 (87%) completing at least three of four home visits | Caregiver: Improvements in burden, social support, depression, positive aspects of caregiving, health, frustration | Seeks integration into usual service delivery, but no sustainability data available |
| Fidelity evaluated: case manager recorded the number of home visits and phone calls. | PwD: Improvements in behavior problems, mood, risk behaviors (supervision, wandering) | |||||||
| Treatment components were “checked off” if used during visit | ||||||||
| Cheung et al. (2014) | Reaching out Dementia Caregiver Support Project (REACH-HK) | Hong Kong (11 NGOs across 18 districts) | RE-AIM | Single group design, pre- post (6 months) | • Eliminated support groups | 243 completed baseline interview with 201 (83%) completing follow-up interview | Caregiver: Improvements in perception of positive aspects of caregiving, depression, burden, bother, and caregiving risks | No sustainability data available |
| Fidelity not indicated | Eliminated specialized computer-integrated telephone system | PwD: Abatement in behavioral problems | Noted that sustainability could be achieved with future research and concerted efforts through partnership with governmental departments, universities, service providers, and funding bodies | |||||
| • After first 2 sessions, subsequent sessions conducted in counseling rooms of NGOs vs. caregivers’ homes | ||||||||
| Easom, Alston, and Coleman (2013) | GA-REACH | Rural Georgia (11 counties): community setting | Not indicated | Single group design, pre- post (6 months) | • Caregiver could substitute four of the in-home visits for telephone visits vs. two in the original REACH II intervention | 161 caregivers enrolled with 85 (53%) caregivers completing intervention | Caregiver: Improvements in caregiver depression, burden, health, and confidence in caregiving skills. | No sustainability data available |
| Fidelity evaluated: close supervision and tracking of interventionists’ interaction. | PwD: Decrease in behavioral problems | |||||||
| Program manager listened to random support group calls. | ||||||||
| Training certification process repeated with each new hire | ||||||||
| Lykens, Moayad, Biswas, Reyes- Ortiz, and Singh (2014) | REACH II | North TX: community setting Alzheimer’s Association | Not indicated | Single group design, pre-post (6 month) | • Modifications in delivery | 494 families enrolled with 177 completing the program | Caregivers: Improvement in caregiver depression and burden | No sustainability data available |
| Fidelity not indicated | • Change terminology in by substituting “dementia care specialists” for “counselors” | |||||||
| • Caregiver notebooks also printed in Spanish | ||||||||
| Nichols et al. (2011) | REACH: Department of Veterans Affairs (REACH-VA) | 15 States: HBPC programs across 24 VAMC facilities | Not indicated in text | Single group design, pre-post (6 months) | • Nine 1-hr in-home visits | 127 enrolled with follow-up data available for 105 (83%) | Caregiver: Improvements in burden, depression, impact of depression on daily lives, frustration | Noted that additional VAMCs requested REACH-VA training and that the VA is discussing rollout at a national level |
| Fidelity not indicated | • Three 0.5-hr telephone, and five 1-hr monthly telephone group support sessions. | PwD: Fewer reported problem behaviors | ||||||
| • Technology not provided | ||||||||
| Stevens, Smith, Trickett, and McGhee (2012) | Scott and White FCP, REACH II in Texas | Scott and White Health care system: integrated health care setting including hospitals, clinics, and AAA | RE-AIM | Single group design, pre-post (6 months) | • No homevisits | 164 enrolled caregivers with 72 (44%) completing all treatment contacts | Caregiver: Improvements in risk score, caregiver burden, and care recipient safety | Noted continued institutional support through monetary, organizational and educational efforts. FCP expanded into two more service regions |
| Fidelity evaluated: intervention materials and treatment delivery schedule followed original, core components. | • Abbreviated assessment | PwD: Patient problem behaviors decreased | ||||||
| Training and oversight of FCP staff by a REACH II member contrib uted to fidelity adherence. | • Did not provide technology component | |||||||
| • Did not provide support groups | ||||||||
| 2. Skills2Care® | ||||||||
| Gitlin et al. (2010) | Skills2Care® | Mid-Atlantic states: private practice home care | RE-AIM | Single group design, pre- post (4 months) | Training of interventionists collapsed from 2 weeks to 2 days | 41 completed one or more sessions but post-treatment surveys available for 20 | Caregiver: Improvements in caregiver knowledge and skills (e.g., understanding memory loss, ability to engage PwD in activities, more confidence managing behaviors, and taking better care of self) | Skills2Care® sessions were reimbursed through Medicare B as part of care provided to patient with dementia education and serves as a mechanism for sustainability |
| Fidelity evaluated: provided manual of procedures, guiding scripts, treatment documentation forms, and training with PI and research interventionist. Evaluated through examination of therapist delivery, caregiver receipt, and enactment. | Name changed from environmental skill-building Optional PT visit to train in proper body techniques absorbed by occupational therapist | |||||||
| Documentation reviewed by project coordinator and PI. | No telephone option for one session | |||||||
| 3. NYUCI | ||||||||
| Klug, Halaas, and Peterson (2014) | ND Dementia Care Services Program | ND (eight regions): Alzheimer’s Association | Not indicated in text | Lack of structured intervention: 6-month to 42-month time frame | • Diagnosis does not have to be confirmed | 1,750 caregivers and 951 persons with dementia with 101 caregivers completing survey of self- reported empowerment | Caregivers: Improvements in caregiver competence and confidence | No sustainability data available |
| Fidelity not indicated | • No limit to number of consultations received | |||||||
| • No limit to amount of time in program | ||||||||
| • Fewer consultations with longer period of time | ||||||||
| Mittelman and Bartels (2014) | MN Family Memory Care (FMC) | MN: 4 project sites selected by the Minnesota Board on Aging and the AAAs | Not indicated in text | Pre-post (4, 8, and 12 months) | • Reduced from six sessions to four sessions | 228 enrolled, of whom 117 (51%) had completed the minimum number of sessions and had at least one follow-up assessment | Caregiver: Improvements in social support, tangible assistance, reaction to behaviors | Noted that the state has committed to continue providing the intervention on which this translational study was based but payment model not specified |
| Fidelity not indicated | PwD: Decrease in frequency of depressive problems, disruptive behaviors | |||||||
| Paone (2014) | New York University Caregiver Intervention called Family Memory Care in Minnesota | MN : 14 program sites, community- based setting | RE-AIM | Mixed-methods, process evaluation (4–8 months) | Protocol, assessment, training, and reporting tools were modified | 137 caregivers completed core components of FMC interventions with 105 completing post-intervention survey | Caregivers: Reported that the intervention was helpful in discussing problems related to caring for PwD, handling changes in PwD behavior, and increasing knowledge of Alzheimer’s disease | Lack of on-going funding source and grant expiration contributed to lack of sustainability of program |
| Fidelity not indicated | ||||||||
| 4. Savvy Caregiver Program | ||||||||
| Samia, Aboueissa, Halloran, and Hepburn. (2014) | MSCP | ME: project sites included hospitals and AAAs) | RE-AIM | Single group design, pre- post, mixed-methods | • Shortened from weekly 2-hr group psych-education sessions more than 7 to 6 weeks. | 770 accessed the program, of whom 676 (88%) agreed to post-test | Caregiver: Improvements in competence, personal gain, management of the situation, directing, letting thing slide, keeping the PwD busy, management of more reasonable expectations, and positive aspects of caregiving, depression (for those with baseline elevated scores) | MSCP is integrated into two Aging and Disability Resource Centers/Agencies on Aging Family Caregiver Program |
| Fidelity evaluated | ||||||||
| Smith and Bell (2005) | Savvy Caregiver Program | CO: 25 communities (rural and urban) Alzheimer’s Association | Not indicated in text | Rural vs. urban caregivers, pre-post (6 months) | • Shortened length of training to 1-, 2-, or 3-week sessions | -54 rural and 42 urban caregivers | Caregivers- improvement in rural caregivers’ depression scores, whereas urban caregivers’ scores did not improve | No sustainability data available |
| Fidelity not indicated | ||||||||
| 5. RDAD | ||||||||
| Menne et al. (2014) | Reducing Disability in Alzheimer’s Disease-OH | OH: Alzheimer’s Association services and AAA | Not indicated in text | Single group design, pre- post (3 months) | No changes made to core components | 326 participants enrolled with 219 (67%) completing pre-post surveys | Caregiver: Improvement in caregiver strain. More sessions associated with decrease in unmet needs after intervention | No sustainability data available |
| Fidelity evaluated: noted that fidelity was monitored and intervention adhered to original RDAD program including original content, same delivery schedule, tools, readings, and handouts | ||||||||
| Teri et al. (2012) a | RDAD | OH: home-based | Not indicated in text | Fidelity evaluated: manuals with clear, comprehensive details for program adoption | Assessment procedures were modified (e.g., assessments not blinded) | 405 (at time of Teri et al., 2012 publication) | Outcome data not yet reported. | Noted as an important area of inquiry for the outcome study |
| STAR-C | ||||||||
| Teri et al. (2012) a | STAR-Community Consultants (STAR-C) | OR: home-based | Not indicated in text | Fidelity evaluated: audiotaped sessions of STAR-C reviewed by University of Washington trainers | Assessment procedures were modified (e.g., assessments not blinded) | 70 (at time of Teri et al., 2012 publication) | Outcome data not yet reported. | Noted as an important area of inquiry for the outcome study |
Notes. AAA = Area Agencies on Aging; AoA = Administration on Aging; C.A.R.E = Caregiver Alternatives to Running on Empty; FCP = Family Caregiver Program; HBPC = Home-Based Primary Care; MSCP = Maine Savvy Caregiver Project; NGO = Non-government organization; PI = principal investigator; PwD = person with dementia; RDAD = Reducing Disability in Alzheimer’s Disease; REACH = Resources for Enhancing Alzheimer’s Caregiver Health; REACH OUT = Resources for Enhancing Alzheimer’s Caregiver Health Offering Useful Treatments; RE-AIM = Reach, Efficacy/Effectiveness, Adoption, Implementation, and Maintenance; VAMC = Veterans Affairs Medical Center.
aThis publication presents two translational studies that are currently under way with no outcome data reported at time of publication.