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(p. 1) Development and Overview 

(p. 1) Development and Overview
Chapter:
(p. 1) Development and Overview
Author(s):

Louis D. Burgio

and Matthew J. Wynn

DOI:
10.1093/med-psych/9780190855949.003.0001
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date: 13 April 2021

The development of REACH and REACH OUT

Our nation increasingly relies on family members or friends (i.e., informal caregivers) for needed care and support as we age. At present, caregiving for a loved one impacts one of every five American households. More than 16 million of us provide informal, unpaid care to an adult suffering from an illness or disability, enabling our loved ones to remain in their own homes and communities as long as possible (Alzheimer’s Association, 2019). Because of our longer lifespans, a continued commitment to community-based care, and the tremendous value of informal home care, family caregiving is expected to become even more commonplace.

Family caregivers typically assume their caregiving role willingly and reap personal fulfillment from helping a family member, developing new skills, and strengthening family relationships. For these benefits, however, caregivers often sacrifice their own health and well-being. Depression, anxiety, poor physical health, and compromised immune function are more common among family caregivers than in adults not providing such care. In addition, the declining health of caregivers can compromise their ability to provide care to others (Dassel & Carr, 2014; Ma, Dorstyn, Ward, & Prentice, 2017).

The challenges and demands of caregiving are further compounded when the care recipient is cognitively impaired. Among caregivers of people aged 60 years or older, nearly one in four (about 26%) supports someone with a cognitive impairment, a memory problem, or a disorder such as Alzheimer’s disease. Because these caregivers are relied (p. 2) upon to manage behavioral disturbances, attend to physical needs, and provide seemingly constant vigilance, they report higher levels of burden, stress, and depression than caregivers dealing with physical problems alone (Arthur, Gitlin, Kairalla, & Mann, 2018; Alzheimer’s Association, 2019).

Recognizing the unique needs of family caregivers for people with dementia, the research community has been pursuing multiple avenues to identify effective interventions that support caregivers and improve their health and well-being. One of these evidence-based interventions, recently highlighted by the Institute of Medicine for implementation by public, private, and community organizations, is Resources for Enhancing Alzheimer’s Caregiver Health, commonly referred to as REACH.

The REACH intervention is the result of two clinical trials sponsored by the National Institutes of Health (NIH). In the first trial (REACH I), initiated in 1995 by the National Institute on Aging (NIA) and National Institute for Nursing Research (NINR), each of six sites tested different strategies to help dementia caregivers manage the stress and burden of their caregiving roles. A quantitative analysis of results from the sites’ collective five-year experience yielded a new intervention, which was subsequently tested across five sites in a randomized clinical trial (REACH II) and funded by NIH in 2001.

REACH II recognized the complexity of the problems causing caregiver stress and burden, and their tendency to vary in severity from one caregiver to another. To address these problems, research clinicians worked with caregivers to provide information, and most importantly multiple skills for managing the caregiving situation. REACH II included:

  • education on dementia and caregiving;

  • “active” skills training on techniques for pleasant events and relaxation;

  • guidance in making the physical environment safer;

  • and instruction and support for improved physical self-care, accessing social support, and a Behavior Problem Action Plan managing various limitations of Activities of Daily Living (ADL), Instrumental Activities of Daily Living (IADL), and behavior problems.

(p. 3) An initial Risk Appraisal shaped the order of intervention components and the intensity of their application.

The REACH II intervention was delivered over six months through as many as 12 in-home visits (some home visits could be substituted with therapeutic telephone sessions), interspersed with three therapeutic telephone sessions, and five support group sessions conducted with a specialized phone system. Findings showed significantly greater improvements in quality of life and depression in the intervention group (Belle et al., 2006).

Building on the success of these clinical trials, the next hurdle was to translate the REACH II intervention for feasible use in community-based settings. In 2004, the Administration on Aging accepted this challenge by awarding a grant to the Alabama Department of Senior Services to implement this intervention with four Area Agencies on Aging. Researchers from The University of Alabama partnered on the project, providing training and evaluation expertise as well as overall project guidance and management.

Consistent with procedures used in community-facilitated research, an advisory committee of key stakeholders participated in all design and delivery decisions to ensure full consideration of the realities of the healthcare and social environments. The eventual intervention product, termed REACH OUT (Resources for Enhancing Alzheimer’s Caregiver Health: Offering Useful Treatments), was delivered to 272 dementia caregivers. This protocol reduced the number of treatment components (i.e., skills that were trained), required fewer intervention sessions, and shortened the overall length of the program. As with the earlier trials, the REACH OUT intervention resulted in significant positive changes in caregivers’ stress and burden and in care recipient outcomes (Burgio et al., 2009).

The most recent iteration of REACH OUT is derived from a 1:1 pragmatic randomized clinical trial published in 2018 in the Journal of the American Geriatrics Association (Luchsinger et al., 2018). It compared the effectiveness of the REACH OUT program to the New York University Caregiver Intervention (NYUCI). Participants were 221 Hispanic caregivers who received either REACH OUT or the NYUCI (p. 4) intervention. The results showed that both interventions were equally effective in reducing caregiver burden (Luchsinger et al., 2018).

The REACH OUT training program was originally developed for use by Agency on Aging service providers, including social workers, nurses, and trained clinicians, and often delivered in caregivers’ homes. Over the last several years, however, we have used the system successfully in primary care settings by using a combination of group and individual sessions with caregivers (Kessler et al., 2016). At this time, we can recommend its use in various primary care settings, including a clinician’s office.

An overview of the REACH OUT intervention

In a nutshell, the REACH OUT intervention is multicomponent, tailored, and flexible. It is focused on the evidence-based therapeutic strategy of problem-solving. When possible, problem-solving should result in a written action plan. The intervention is delivered during six one-on-one sessions over a six-month period of time. All six sessions are intended to occur face-to-face between the caregiver and clinician; however, a maximum of two telephone sessions can be substituted for face-to-face sessions if necessary (usually as a result of logistical problems). These sessions can occur in the home; however, some or all the sessions can occur in the clinician’s office or other primary care setting. Phone calls to caregivers should be scheduled to occur between one-on-one sessions to check on the caregiver’s progress and make minor adjustments in Action Plans. These are referred to as “check-in calls.”

The REACH studies showed that the causes of caregiver stress and burden are related to deficits in the caregiver’s knowledge about dementia and the caregiving role. Most important, data showed that caregiver stress and burden revolved primarily around “five risk areas.” These are:

  • deficits in caregiver self-care and positive health behaviors

  • low levels of caregiver emotional well-being

  • inadequate social support

  • home environments that produce detrimental effects in persons with dementia (PWD) and are possibly unsafe for both caregiver and care recipient

  • the presence of care recipient problem behaviors

(p. 5) Thus, the REACH OUT intervention focuses its efforts on:

  • improving the caregiver’s knowledge about dementia and the caregiving role,

  • improving knowledge and skills for physical and emotional well-being,

  • optimizing the home environment for the care recipient,

  • teaching the caregiver how to manage care recipient problem behaviors, and

  • enhancing caregiver social support.

REACH OUT begins with a formal Risk Appraisal to determine how much emphasis to place on each of the intervention components. Thus, the intervention is standardized with respect to the number and types of treatment components but varies with respect to the dosing on individual treatment components. The tailoring of the intervention is guided by the findings of the risk appraisal. For example, caregivers with loved ones who do not display behavior problems will receive only a small dose of the intervention component designed to manage behavior problems (Behavior Management Action Plan). This enables the clinician to concentrate on those areas where risk factors are higher.

Tools to assist the clinician: Caregiver skills training and knowledge acquisition

The remainder of this guide contains the tools needed by the clinician to assist the caregiver in acquiring the knowledge and skills to become more effective in their role, and to reduce their level of stress and burden. The primary tool used to help caregivers acquire knowledge about dementia and the caregiving role is the Caregiver Notebook (see Appendix A). Provide each caregiver with a Notebook (typically a three-ring binder) that contains educational information about dementia, self-care, safety, and other relevant caregiver issues. The first section of the Caregiver Notebook should include copies of all subsequent Action Plans (Appendix B). It is a tool for organizing intervention materials and a resource guide for the caregiver to use during and after the intervention. (p. 6)

Clinician Note

Information to be provided to caregivers (some of the appendices, worksheets, etc.) as well as items which you will need multiple copies of (e.g., assessments, clinician checklists) are available for download from the Treatments That Work website at www.oxfordclinicalpsych.com/dementiacaregivers

To identify and prioritize problem areas for each caregiver (i.e., “tailoring”), the councilor completes a risk appraisal (Chapter 2). The risk appraisal includes the 23-item REACH OUT Risk Appraisal Measure (RAM) and is supplemented by the 24-item Revised Memory and Behavior Problem Checklist (RMBPC).

Tailoring pertains to both the amount of clinician time spent in each risk module and the order of module presentation. The modules contain information and worksheets to assist you in enhancing the caregiver’s knowledge of the five risk areas, and to form an Action Plan if the risk appraisal shows that the risk area is a priority for the caregiver. The five modules can be found in the guide in Chapters 3 through 7 and should be administered in an order tailored to the caregiver’s needs and areas of risk.

You will use various forms to provide more effective treatment. These tools include, but are not limited to, a Home Safety Checklist (Appendix D), the Caregiver Guide for Healthy Living (Appendix E), the ABCs of behavior management (Appendix G), and, if indicated, Pleasant Events Training (Appendix F). These tools will be described later in this guide.

The most critical tool at the clinician’s disposal is the Action Plan. It is important to understand that all aspects of the REACH OUT intervention involve problem-solving and the development of written Action Plans resulting from this process. The goal of this intervention is to engage the caregiver in joint problem-solving with the objective of creating written Action Plans targeting specific caregiving problems (e.g., improving caregiver health, addressing hazards in the physical environment, and managing challenging behaviors in care recipients). Problem-solving strategies are used to generate relevant information about the “target problems” and the overall caregiving situation, with special emphasis placed on the context in which the target problem occurs. In general, (p. 7) problem-solving should be thought of as a “mindset” or guiding strategy to use when working with the caregiver to develop and modify Action Plans over the intervention period. Sample Action Plans for common issues (e.g., bathroom accidents, communication difficulties) are provided in Appendix C.

Flow of intervention: Session-by-session description

The REACH OUT intervention is usually spread over a six-month period comprising six one-on-one sessions with the caregiver. If practical, check-in phone calls are interspersed between sessions. Table 1.1 is provided for reference. It is important to note that the presentation of material by session, as presented in this table, is only a sample. The actual order of presentation will be determined by the Risk Appraisal. We include Clinician Treatment Implementation and Tracking Checklists in Appendix J to assist you in applying this multicomponent intervention. These should be filled out following each session in order to help you adhere to the protocol and measure session-to-session caregiver progress. In Appendix H we provide supplemental material designed to help work through common barriers that may arise during the Risk Appraisal process. In Appendix I we present some common exigent circumstances or adverse events encountered during treatment sessions. This appendix includes the Geriatric Depression Scale that can be administered to caregivers if depression is suspected.

Table 1.1. Sample REACH OUT Intervention Schedule: 24 Weeks

One-On-One Sessions

Intervention

Week

Total

Week

1

2–3

5–6

8–9

15–16

19–20

24

Session

1

2

3

4

5

6

6*

* Under extreme circumstances, a maximum of two of these sessions can be conducted via phone.

Session #1 is always dedicated to establishing rapport, introducing the REACH OUT program, providing psychoeducation regarding dementia or caregiving education, and completing the Risk Appraisal measures. If possible, attempt to do a safety walk-through early in the therapeutic process. This assessment can uncover risks that place the caregiver and care recipient at risk (e.g., loaded handguns, sharp objects).

Although you should provide at least some training on all five risk areas, not all risk areas will require an Action Plan. For example, if the care recipient is not displaying any challenging behaviors, or the caregiver is taking good care of their own health, there is no need for an Action Plan in these areas.

(p. 8)

Sample Order of Topics Presented by SessionPDF