REACH Templates
REACH Overview
1. Resources for Enhancing Alzheimer's Caregiver Health (REACH) is a six-year initiative that was established in 1995 by the National Institutes of Health under leadership of the National Institute on Aging. Its primary purpose is to carry out social and behavioral research on interventions designed to enhance family caregiving for Alzheimer's Disease and related disorders. Six research sites and a coordinating center have been funded through cooperative agreements with the National Institute on Aging and the National Institute of Nursing Research. These projects focus on characterizing and testing the most promising home and community based interventions for enhancing family caregiving, particularly with minority families. The interventions include psychoeducational support groups, behavioral skills training programs, family-based systems interventions, environmental modifications, and technological computer-based information and communication services. The coordinating center facilitates cooperation and standardization of the core protocol across all sites, and is responsible for developing and maintaining a common database as well as carrying out all cross-site analyses. A major outcome of this initiative will be the availability of a pooled database that will enable investigators to answer key questions about optimal intervention strategies for maintaining and improving the health and quality of life of caregivers of dementia patients. Psychological distress (e.g., depressive symptomatology) is the primary outcome of interest, but impacts on health status, health practices, and health care utilization will also be assessed.
2. Resources for Enhancing Alzheimer’s Caregiver Health (REACH) is a unique, multi-site research program sponsored by the National Institute on Aging (NIA) and the National Institute of Nursing Research (NINR). REACH grew out of an NIH initiative that acknowledged the well-documented burdens associated with family caregiving, as well as the emergence of promising family caregiver interventions reported in the literature. This research literature provided the foundation for a systematic test of well-specified and theory-based intervention approaches. In 1995, NIH funded five intervention sites (a sixth site was added in 1996) and a Coordinating Center to evaluate a variety of interventions for family caregivers of persons with Alzheimer’s Disease and Related Disorders at the mild to moderate level of impairment. This intervention research program was designed to be a feasibility study to assess a variety of theory-driven interventions (see Table 1) including: 1) individual information and support strategies, 2) group support and family systems efforts, 3) psychoeducational and skill-based training approaches, 4) home-based environmental interventions, and 5) enhanced technology systems, and was culturally tailored to meet the needs of racial/ethnic majority and minority populations.
The study goals shared by all REACH sites include: 1) designing theory-driven caregiving interventions to test hypotheses about intervention processes and their effect on family caregivers, 2) specifying intervention components that help us understand the pathways through which interventions actually produce desired outcomes, 3) developing a standardized outcome protocol to assess the impact of different strategies on caregivers and their care recipients, and 4) creating a common database and measurement intervals that will enable investigators to answer key questions about optimal intervention strategies for maintaining and improving the health and quality of life of caregivers of dementia patients. Psychological distress (e.g., depressive symptomatology) is the primary outcome of interest, but impacts on health status, health practices, and health care utilization will also be assessed. REACH successfully randomized 1222 caregiver/care recipient dyads representing both majority and minority populations to 15 different conditions.
Table 1. REACH Interventions
Site / Description of InterventionsBirmingham / Skill Training Condition – behavior management and problem solving skills training designed to increase caregivers’ ability to manage care recipients’ behavioral excess and deficits, and to increase caregivers’ ability to cope with these and other daily stressors.
Minimal Support Condition – telephone-based, minimal intervention that provides caregivers with contact and support such as active listening and empathy.
Boston / REACH for TLC (Telephone Linked Computer) system – telephone-based intervention designed to reduce caregiver stress. The system provides 1) automated monitoring of caregiver stress levels, 2) a voice-mail caregiver bulletin board; 3) an ask-the-expert call option, and 4) care recipient behavioral distraction to reduce disruptive behaviors
Usual Care
Memphis / Information and Referral (Usual Care) – caregivers receive written information on dementia and referrals to community resources.Behavior Care – caregivers receive written information plus skills training and materials in patient behavior management (periodic consultations and phone calls with behavior management interventionist to manage care recipients behaviors
Enhanced Care – caregivers receive written information and skills training plus behavioral modification strategies to decrease stress for the caregiver (relaxation training, coping strategies).
Miami / Family-based Structural Multi-system In-home Intervention (FSMII) – In-home family systems therapy designed to reduce caregiver’s distress of managing and living with care recipient, and enhance family functioning.FSMII + Computer Telephone Integration System (CTIS) – designed to augment `FSMII with a computerized telephone system. The CTIS system is used to facilitate communication among the therapist, caregiver, family, and other support systems by providing messaging, conferencing, access to pre-stored information, and respite functions.
Minimal Support Condition –telephone-based, minimal intervention that provides caregivers with contact and support such as active listening and empathy.
Palo Alto / Coping with Caregiving class – psychoeducational class designed to teach caregivers coping and mood management skills.
Enhanced Support Group – support group patterned after local community support groups (standardized meeting frequency, duration, length of time in group and educational materials).
Minimal Support Condition – telephone-based, minimal intervention that provides caregivers with contact and support such as active listening and empathy.
Philadelphia / Environmental Skill-building Program – home-based intervention that provides caregivers with skills and technical support to modify the home to manage excess care recipient behaviors. Problem areas addressed may include managing ADLs, excess agitation, wandering or incontinence, and caregiver need for respite.
Usual Care
REACH Methods
REACH recruited family caregivers of individuals with dementia from multiple community sites, health, and social agency settings, with special attention to enrolling diverse participants. Outreach efforts such as radio, television, targeted newsletters, public service announcements, and community presentations were common across sites. Participants were also recruited from referrals from memory disorder clinics, primary care clinics, social service agencies and physician offices. Recruitment goals were based on power analyses for detecting different effect sizes for the different intervention strategies. Thus enrollment numbers differed across the sites. Details about the extensive recruitment efforts, as well as their related costs and outcomes, are reported in the literature (Nichols, Malone, Tarlow, & Lowenstein, 2000; Tarlow & Mahoney, 2000).
REACH enrolled and randomized 1,222 family caregivers over the age of 21 who lived with and provided care for a relative with ADRD for a minimum of fours hours of supervision or direct care per day for at least the past six months. They were excluded if they were involved in another caregiver intervention study or had an acute illness that would prevent them from participating for at least six months.
Care recipients had to have a medical diagnosis of probable ADRD or exhibit a Mini-Mental State Exam (MMSE; Folstein, Folstein, & McHugh, 1975) score less than 24. Additionally they had to have at least one limitation in basic activities of daily living (ADL; Katz, Ford, Moskowitz, Jackson, & Jaffe, 1963) or two dependencies in their instrumental activities of daily living (IADLs; Lawton & Brody, 1969). Both sexes were recruited except at one site, Palo Alto, where only female caregivers were enrolled.
These participation criteria were designed to ensure that caregivers were involved in daily tasks and responsibilities that could be burdensome. Other requirements were logistical and included having a telephone, planning to remain in the geographic area for at least six months, and competency in languages specified by each study site.
Interventions at each site were tailored to the specific racial or ethnic group being served (e.g., Blacks/African-Americans were a key focus at Birmingham, Boston, Memphis and Philadelphia; Hispanic/Latinos at Miami and Palo Alto). All intervention materials and assessment instruments were translated into Spanish for the Hispanic participants using established techniques for forward and back translation and allowing for regional variation in language expression. Also, the Miami and Palo Alto sites included bi-lingual staff. Special techniques for recruitment and retention of these ethnic minority groups were also used, such as obtaining endorsement from community gatekeepers and providing financial assistance for transportation and respite costs when needed (Gallagher-Thompson, et al., 2000; Nichols, et al., under review).
Potential participants were initially interviewed at each site via telephone using a common set of screening questions. After obtaining informed consent from those who were eligible, caregivers were administered the core battery of measures in person and then were randomly assigned to intervention or control group conditions at each site. Caregivers were subsequently interviewed using the REACH core battery of measures at six, 12 and 18 months. The core battery was modified, however, if the care recipient’s status changed prior to their next scheduled interview. If the care recipient died, a bereavement battery was substituted; if the care recipient was institutionalized, a placement battery was used. Both of these batteries eliminated measures that were not relevant to current caregiving concerns, such as care recipients’ bothersome behaviors and caregiver upset with such behaviors, but maintained the relevant domains such as caregiver depression. If at the time of a scheduled interview the care recipient did not remain institutionalized and returned home, the full battery was administered. Consequently, the analytic sample size reported in this paper varies for the two outcome measures according to the disposition status of the caregiver (active caregiving at home, long-term care placement or bereaved). The core battery of measures used at each testing occasion is described in more detail in Wisniewski et al. (under review) and was administered at 6, 12, and 18 months after randomization.
Each site obtained local Institutional Review Board (IRB) approval for their specific interventions and maintained ongoing approval during the five-year study period. The coordinating center conducted site visits to ensure adherence to study protocols and confirm the exclusive use of REACH trained and certified interviewers. They also conducted monthly monitoring of enrollment and data processing for quality control purposes.
A total of 15 interventions (9 active and 6 control group conditions) were tested across the six REACH sites. These interventions are described in detail in Wisniewski et al. Three sites, Birmingham, Boston and Philadelphia, tested a single active intervention (Skills Training Condition [STC], Telephone Linked Computer [TLC], Environmental Skill Building [ESP], respectively). Three sites implemented two active interventions: Memphis (Behavior and Enhanced care), Miami (Family-based Multisystem In-home [FSMII], and FSMII combined with computer technology information system [CTIS] and Palo Alto (Coping class and Enhanced Support Group). Three sites used modified usual care control groups (Boston and Philadelphia) in which caregivers received information packets only. One site (Memphis) provided information and referral while three other sites (Birmingham, Miami, Palo Alto) utilized a minimal support control (information and empathetic listening [MSC]). An important feature of REACH was the use of rigorous treatment implementation procedures in which each site developed checks and balances to assure minimal deviation from intervention protocols as more fully explained in Burgio, et al. (in press).
The background of individuals who delivered the interventions (e.g., occupational therapists, social workers, psychologists, and counselors) varied at each site and across interventions, as did the delivery characteristics including dose and intensity of contact, and location of intervention, e.g., home, community, and medical office. Overall, the active phase of the REACH interventions ranged in length from 6 months (Birmingham, Boston, Philadelphia, Miami, Palo Alto) to 24 months (Memphis), with each intervention requiring a different frequency of contact. There was wide variation in the average number of contacts for each intervention in the first six months ranging from 5.2 (Philadelphia ESP) to 59 (Miami FSMII + CTIS). Overall, during the first six months, actual contact was more frequent in active than control conditions within each site except for Birmingham and Palo Alto. In these sites, researchers attempted to equalize the number of contacts such that control and intervention groups received equivalent contacts.
REACH Core Measures
Table 1. REACH Core Baseline Measures
Category / Name of Measure/Form / Citation/Source / # items / Time estimate / CommentsDemographics / CG Sociodemographic Information
CR Sociodemographic Information / various sources
various sources / 13
6 / 5 min
2 min / derived from multiple sources, including site-specific proposals, US Census, SWAN, AHEAD etc.
CR physical health / CR Sociodemographic Information / SF-36, other health measures / 1 / 1 min / CG proxy report of CR health
CR physical impairment / ADL/IADL / Katz et al., 1963 Lawton & Brody, 1969 / 17 / 10 min / CG proxy report of CR functioning
CR behavior / Revised Memory and Problem Behavior Checklist (RMBPC) / Teri et al., 1992 / 26 / 5 min
CR cognition / MMSE / Folstein et al., 1975 / 12 / (10 min) / note: this time will not count in CG interview length
CG burden / Revised Memory and Problem Behavior Checklist (RMBPC)
Positive Aspects of Caregiving
ADL/IADL helping
Vigilance / Teri et al., 1992
Schulz et al. (in press), CHES
FIM (Granger, Hamilton, Sherwin, 1986)
new (Mahoney) / 26
11
17
4 / (see above)
3 min
(see above)
1 min / participants asked about the burden of each behavior
based in part on othe rmeasures of positive aspects (e.g., Lawton, et al., 1991)
follow-up items to traditional ADL/IADL items ask if CG helps (additional items from FIM are semi-core)
items ask about time spent supervising CR
CG physical health / CG Health & Health Behaviors / AHEAD; HRS, Stewart & Archbold, 1986; DYNH / 19 / 7 min / new form based on items from various sources
CG medications / CG Medications / CHS / N/A / 10 min / prescription and non-prescription meds from brown bag are listed and coded at sites; length depends on number of meds taken
CR medications / CR Medications / CHS / N/A / 10 min / prescription and non-prescription meds from brown bag are listed and coded at sites; length depends on number of meds taken
CG depression / CES-D / Radloff, 1977 / 20 / 5 min
CG mental health/well-being / Anxiety / Spielberger, 1979 / 10 / 3 min / Anxiety portion of STPI
CG social support / Received support
Lubben Social Network Index (SNI)
Negative Interaction Subscale
Satisfaction with Support / Krause, 1995; Barrera et al., 1981
Lubben, 1988; Berkman & Syme, 1979
Krause, 1995
Krause, 1995 / 11
8
4
3
___
26 / 5 min / ISSB as modified by Krause
eliminates helping, and living arrangement questions
interpersonal conflict
with tangible, emotional, informational support
CG Religiosity / Religiosity / new, various sources / 4 / 2 min / designed to assess participation in religious activities and spirituality
CG Social activities / Social activities / new (Haley) / 7 / 2 min / satisfaction with the amount of time spent engaging in recreational activities
Service Utilization / Formal Care and Services / new, various sources / 22 / 10 min / new form based on items from various sources; includes in-home services & medical services; obtains info about CG and CR and data for cost estimates
Cost / Formal Care and Services
ADL/IADL / 22
8 / (see above)
(see above) / follow-up questions of frequency/month for services and amount of time helping with IADLs & ADLs
Total time estimate = 81 min