Problem Addressed

• Many individuals taking care of patients with dementia: Almost 11 million Americans provide unpaid care to an individual with Alzheimer's or another form of dementia. In 2009, these individuals provided 12.5 billion hours of care.¹
• Significant physical and emotional burden: Caring for a dementia patient can be very challenging, causing high levels of emotional stress and depression and potentially having a negative impact on overall physical health, employment status, income, and financial security.^2,3 This collective burden increases the caregiver’s risk of death.⁴
• Unrealized potential of caregiver support: Interventions that provide counseling, case management, or telephone support have been shown to reduce caregiver burden and improve their quality of life.^1,5-7 Yet relatively few caregivers have access to such programs.

Description of the Innovative Activity

• Program introduction and risk assessment at initial inperson visit: A trained staff member (usually a social worker, nurse, or psychologist) comes to the patient’s home to meet with the caregiver and introduce the program. During this 90-minute session, this individual (known as an “interventionist”) asks the caregiver to describe his or her “story” (including how he or she became a caregiver and what a typical day looks like) and distributes a caregiver notebook. (See the bullet below on written resources for more details on this notebook.) The interventionist also administers a Risk Priority Inventory to assess the caregiver's risk in the targeted areas, as outlined below:
  • Emotional well-being: Using the Patient Health Questionnaire (also known as PHQ-9), the interventionist assesses the extent to which the caregiver feels depressed, sad, angry, or lacking in time for enjoyable activities. Using the Zarit Burden Interview, the interventionist focuses on how often the caregiver experiences stress or difficulty with caregiving tasks, such as getting chores done and tending to the care recipient’s toileting needs.
  • Self-care and healthy behaviors: This portion of the caregiver assessment focuses on the presence of health-related issues and behaviors, such as unexplained weight loss, sleeping problems, lack of physical activity, and poor nutritional habits. It also assesses markers of inadequate self-care, such as missing physician appointments, not getting a flu shot, and not visiting the dentist.
  • Social support: This section focuses on feelings of isolation from family or friends and on the availability of social support, such as having someone to talk to about important decisions, to offer comfort, or to provide a break from caregiving duties.
  • Management of the care recipient’s problem behaviors: This part of the assessment evaluates the degree to which the caregiver has to deal with any of 25 memory, behavior, or mood problems, such as asking the same questions over and over, being verbally aggressive, and expressing feelings of hopelessness, and whether these problems are bothersome to the caregiver.
• Review of assessment, pressing issues at second visit: One week after the initial visit, the interventionist returns for a second 60-minute inperson session to review risk assessment results; make sure the caregiver has a full understanding of dementia (e.g., the fact that the care recipient has a disease and that any behavioral problems are beyond his or her control); and identify and address immediate safety issues, such as the presence of guns in the house or the potential for the care recipient to access the keys to a car. The two also begin to develop a customized plan for addressing the caregiver's major risks and challenges.
• Customized support during subsequent sessions: After the initial sessions, the interventionist and caregiver hold 10 additional one-on-one sessions: 7 inperson and 3 telephone sessions. These sessions, which span the next 19 to 20 weeks, occur weekly for the first 2 weeks and subsequently occur every other week.
  • Inperson sessions: These 60-minute sessions focus on teaching the caregiver practical strategies for dealing with pressing risks in one or more of the targeted areas. Interventionists customize the sessions to the caregivers’ needs—for some caregivers, all sessions may focus on one or a few areas, while for others, sessions may cover a variety of problems. At each session, the interventionist reviews strategies discussed in the previous meeting to find out how they have worked and address outstanding issues. Key content that can be covered includes the following:
    • Self-care and healthy behaviors: Caregivers learn the importance of nutrition, self-care, attendance at medical appointments, and adherence to their medication schedule. They also learn techniques to improve healthy behaviors. Caregivers receive a “health passport” that provides reminders about health maintenance (e.g., getting an annual physical examination) and a tool to record health information and appointments for themselves and the care recipients.
    • Management of problem behaviors: The interventionist and caregiver engage in problem-solving processes where they define the care recipient’s problem behaviors in specific terms, translate them into objective goals, and develop specific action-oriented steps to address them. The goal is to find effective and workable solutions to specific behaviors commonly exhibited by the care recipients. Structured, behavioral strategies for managing targeted behaviors are highlighted in the caregiver notebook. (See bullet below for more details.) The sessions include time to practice these techniques through role-playing and to review how previously developed strategies have worked (with modifications made as needed).
    • Emotional well-being: Caregivers receive education about the importance of managing their burden and emotional well-being, and practice strategies and skills related to doing so, such as taking periodic breaks, doing breathing and stretching exercises, using guided imagery, and engaging in pleasant events (e.g., taking a bubble bath or a walk, listening to music).
    • Social support: Sessions focus on helping caregivers reduce social isolation and get support with decisionmaking and management of caregiving tasks. Caregivers learn how to access available community resources and what strategies and skills they can employ to enhance social support and communication with providers and family members. Caregivers practice these strategies through role-playing exercises.
  • One-on-one telephone sessions: As a substitute for inperson meetings, the 7th, 9th, and 11th sessions take place over the telephone. During these 30-minute conversations, the interventionist checks in with the caregiver to assess his or her progress and see whether particular strategies are working. The interventionist does not introduce any new material during these sessions.
• User-friendly resources to guide caregivers: Caregivers have access to two user-friendly resources designed to empower them to deal with particular situations as they arise during their caregiving activities, as outlined below:
  • Notebook: Throughout the sessions, interventionists refer to the caregiver notebook. Written at a fifth-grade level, it contains descriptions of practical strategies related to 30 behavioral and 18 stress/coping topics that can be customized to the caregiver’s needs. Written in a concise, accessible manner, the notebook includes scripts, talking points, and other resources, along with a priority index organized by strategy and risk level to help determine which specific strategies apply to a caregiver’s situation.
  • Summary form: At the final inperson session, the interventionist and caregiver collaboratively fill out a form that covers every major area discussed during the sessions, including specific problem-solving strategies and methods that have worked well, along with those that have not.
• Telephone-based support groups: A month after the inperson sessions begin (4 weeks into the program), participating caregivers receive a call from a group leader who invites them to participate in five monthly telephone-based support sessions with approximately five other caregivers in similar situations. These 60-minute sessions reinforce the information and training received in one-on-one sessions, and also give caregivers an opportunity to receive support and guidance from peers facing similar situations. The leader uses group members’ risk assessments to identify appropriate examples to discuss during the sessions.
• Abbreviated model: Information provided in January 2013 indicates that the VA is now using and evaluating an abbreviated model. Since its rollout in June 2012, staff at 39 sites have been trained on the alternative model. The modified intervention is still based on a risk priority assessment that targets the main caregiving risk areas: education, safety, emotional well-being, health and self-care, social support, and patient behaviors. It incorporates the core evidence-based components of the original REACH model: problem-solving, positive thinking/mood management, and stress reduction. The new model includes an Active Intervention Phase with four core sessions with the caregiver over 2 to 3 months. It allows for additional sessions based on caregiver need, desires, and goal attainment as well as the interventionist’s clinical judgment. If problems arise, there is a Maintenance Phase, where additional problems/stress issues can be addressed with the caregiver. The REACH VA Program can be delivered face to face (in the home or facility) or by telephone. Training has been reduced to 2.5 to 3 hours. In addition, the telephone support groups are optional and can be a complementary or a stand-alone intervention. The support groups have been formatted to include several different options. The four-session length has been tested by two REACH II investigators in different populations with results similar to those of REACH II and REACH VA.

References/Related Articles

Contact the Innovator

Innovator Disclosures

Results

• Better caregiving skills and abilities: Nearly all participants (97.8 percent) felt the overall program benefited them. Specifically, they indicated that it gave them a better understanding of the disease and their role as caregivers (92.1 percent), increased their confidence in dealing with problem behaviors (93.3 percent), improved their caregiving abilities (91 percent), and improved life for the care recipient (82 percent). Both the individual home visits and group sessions received high marks.⁸
• Less burden and fewer frustrations: The program led to statistically significant declines in measures of caregiver burden and frustration levels.⁸
• Less severe depression: The program led to statistically significant declines in the severity of depression experienced by caregivers and the impact of the disease on their lives.⁸
• More free time: On average, caregivers had 1.75 hours freed up from caregiving time on duty after participating in the program. The decline approached, but did not quite meet, the test of statistical significance.
• Fewer problem behaviors among care recipients: On average, the patients with dementia exhibited one fewer problem behavior after their caregiver completed the program (representing a statistically significant decline in problem behaviors).⁸

Evidence Rating (What is this?)

Context of the Innovation

Planning and Development Process

• Securing VA funding and approval: The researchers wrote and submitted a proposal to the VA National Caregiver Support Program, which agreed to fund adaptation of REACH II for use in VA medical centers.
• Revamping program to meet VA needs: Working in collaboration with other researchers involved in REACH II, program developers made minor modifications to the REACH II protocol to fit the VA’s needs and budget.
  • No computer-assisted telephone: Owing to cost concerns and other considerations, program developers decided not to use computer-assisted telephones for the group calls. (These speaker telephones have screens and special software to enable the group to view written information on problems and access resource numbers.)
  • Immediate problem-solving: Program developers decided to include all behavioral and problem-solving strategies in a user-friendly caregiver notebook, thus allowing interventionists to refer to them during sessions. During REACH II, interventionists would not immediately address problems identified during sessions, but would instead consult with dementia experts in their home offices and then introduce the problem-solving strategies at the next session. In the VA, interventionists may not have easy access to such experts, so program leaders decided to use a different approach, one that has the added benefit of allowing problems to be addressed without delay.
  • Simplified risk assessment tool: Program developers condensed the 51-item REACH II risk appraisal into a 21-item survey. As part of this effort, they added specific questions on issues important to the VA, such as advance care planning, available backup resources in the event of caregiver incapacitation, and interactions with the patient’s health care providers. With the exception of the VA-specific questions, the final product is similar to a 16-item tool recently finalized by a REACH II working group. Program developers also chose several additional standardized instruments to be used.
  • Condensed, user-friendly educational resources: Program developers condensed and separated the voluminous REACH II materials into an operations and training manual, manuals for interventionists and support group leaders, and a caregiver notebook. During this process, they sought to remove much of the research-related content and to revamp relevant educational materials into comprehensive but user-friendly manuals.
• Recruiting and training interventionists: Program developers recruited, trained, and certified 73 staff from 24 VA Home-Based Primary Care programs, using a Web-based service that allows trainees to view slides on the computer and participate by telephone. The initial training session lasted 8 hours, although it has subsequently been reduced in scope. Several other REACH II investigators led portions of the training. Staff were certified based on knowledge (demonstrated in writing) and performance on skill-based materials. Only 53 of the 73 ended up providing support services to caregivers during the initial trial.
• Expanding the program throughout the VA: As part of the VA's National Caregiver Support Program, REACH VA has been made available to all VA medical centers; as of October 1, 2012, staff at 72 facilities have been trained (updated January 2013).
• Expanding to other conditions: The VA has developed versions of REACH VA for caregivers of those suffering from spinal cord injury/disorders and traumatic brain injury. REACH VA Spinal Cord Injury/Disorders has been piloted and began a national rollout in 2012. REACH VA Traumatic Brain Injury is currently being piloted/rolled out. Original and abbreviated versions of the programs are available (updated January 2013).
• Developing an abbreviated model: An abbreviated four-session model has been developed and is being implemented and tested for facilities that choose this option (updated January 2013).

Resources Used and Skills Needed

• Staffing: The program does not require additional staff, as social workers, psychologists, and nurses provide the services as part of their regular duties. These individuals typically have at least a bachelor’s degree, with many having a master’s degree. Interventionists generally support five caregivers at a time.
• Costs: Data on program costs are not available. The primary upfront costs consisted of the labor effort required to adapt REACH II for the VA and the time involved for training and certification. Would-be adopters can likely reduce these costs by working with REACH VA developers on training, certification, and adaptation of REACH VA materials for their setting. (See Tools and Other Resources section for more information.)

Funding Sources

Tools and Other Resources

Getting Started with This Innovation

• Assess program’s fit with organizational model and culture: This program will work best (and can more easily be integrated into) organizations that serve caregivers or their care recipients over a period of time, ideally with some services provided in the home. It may not work well in organizations that have limited, episodic contact, such as an inpatient facility that treats patients with dementia only after an acute medical episode.
• Secure leadership approval and support: Having approval and funding from VA leaders gave the program legitimacy in the eyes of all involved.
• Recruit enthusiastic frontline staff: In addition to leadership support, program success depends on having enthusiastic staff who buy into and embrace the program, such as social workers, nurses, and psychologists willing to support caregivers as part of their regular duties. Each VA medical center solicited volunteers to play this role, with most receiving a very positive response.
• Adopt all components, not bits and pieces: The evidence supports the effectiveness of the entire program, not individual parts of it. To the extent possible, therefore, would-be adopters should include all major elements, as the different components are intended to work synergistically. The goal is to empower the caregiver to use practical problem-solving approaches tailored to his or her individual situation, not to provide generic lists of potentially useful ideas.

Sustaining This Innovation

• Consider alternative if home visits are impractical: Although the REACH VA trial involved in-home visits, other organizations may lack the resources to provide such services and need to consider alternatives. For example, the leaders of some organizations (e.g., physician offices, integrated systems) have considered supporting caregivers during regular visits to their facilities. (This approach should work, given that it still involves face-to-face sessions.) Others are testing an “all-telephone” approach, but the effectiveness of this strategy has not yet been determined.
• Focus resources on truly burdened caregivers: Some caregivers experience few if any problems, while others may be severely stressed and burdened. Resources should be focused on those who truly need the support.
• Consider expansion to other conditions: As noted, the VA has begun to develop similar programs to serve the caregivers of patients with other conditions who require intense support, including those with traumatic brain and spinal cord injuries/disorders.

Use By Other Organizations