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Engaging Communities in Evidence-based Interventions for Dementia Caregivers

Stevens, Alan B. PhD; Lancer, Kevin PhD; Smith, Emily R. MSPH; Allen, Lisa BA; McGhee, Richard BA

doi: 10.1097/01.FCH.0000342843.28477.72
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Caring for a family member with dementia is associated with unique stressors and burdens related to caregiving. Delivering interventions with proven efficacy to dementia caregivers remains a challenge because of the complexity of providing psychosocial support and skills training for caregivers within current models of formal healthcare services. This article focuses on implementation research and presents a dementia caregiver model program that merges an evidence-based intervention with a proven volunteer program, resulting in the implementation research program called Support Teams for Caregivers. In this article, we delineate our implementation model, describe the program, and present a case study.

From the Scott and White Healthcare, Temple, Texas (Dr Stevens and Mss Smith and Allen), and Texas A&M University Health Science Center, College Station (Dr Stevens); Primary Care Behavioral Health, Malcolm Randall Veterans Affairs Medical Center, Gainesville, Florida (Dr Lancer); and Central Texas Area on Aging, Belton, Texas (Mr McGhee).

Corresponding author: Alan B. Stevens, PhD, Program on Aging and Care, Scott & White Healthcare, 2401 S, 31st (CDM), Temple, TX 76508 (e-mail: astevens@swmail.sw.org).

The authors thank funding by the Johnson & Johnson/ Rosalynn Carter Institute for Caregiving Caregivers Program to the Area Agency on Aging of Central Texas.

THERE IS WIDE CONSENSUS that caring for a family member with dementia is associated with unique stressors related to the work and worry of care,1 as well as disruptions in the caregiver's social and professional activities. Research has shown that as the strain and burden of caring for a person with dementia increases, the likelihood of a caregiver developing depressive symptoms also increases.2 Because of the high care demands of persons with dementia, family caregivers often neglect their own physical health needs, resulting in negative health outcomes. However, a growing number of evidence-based interventions have helped reduce the burden of caregiving and improve quality of life significantly.3–5 Effective programs for the caregiver typically provide long-term support, allowing the caregiver to reduce specific risks (eg, expressed burden) associated with poor outcomes (eg, depression).

Delivering interventions with proven efficacy to dementia caregivers remains a challenge. Interventions with the greatest demonstrated benefit blend psychosocial support and skills training for the caregiver with case management and formal care services for the person with dementia, resulting in the need for a complex service-delivery model. Moreover, the demand for caregiver support will increase with the dramatic predicted increase in the number of family caregivers—expected to increase by 85% from 2000 to 2050.6

The critical need to move evidence-based interventions into practical and available services for caregivers requires greater attention to translation research. Translation research, by definition, includes multiple methods of studying the use of efficacious interventions in practice settings. Research has demonstrated the effectiveness of adopting, maintaining, and sustaining evidence-based interventions in clinical practice environments, such as critical care units and healthcare clinics.7–10 Although the majority of these studies have taken place in healthcare settings, not within community contexts, the advantages and challenges of translation are similar. Implementation research, a core method of translation, within a community setting is the focus of this article. Presented hereafter is a dementia caregiver model program that merges an evidence-based intervention, Resources for Enhancing Alzheimer's Caregiver Health (REACH II), with a proven volunteer program, The Support Team Network. The resulting implementation research program is called Support Teams for Caregivers.

The creation of the Support Teams for Caregivers program was influenced by 2 translation frameworks, RE-AIM11 and Replicating Effective Programs (REP)12 as well as methods of community science. Here, we describe the resulting implementation research project and present a case study based on a family caregiver who participated in the new program.

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BACKGROUND

The REACH projects

The REACH projects (REACH I and II), funded by the National Institute on Aging and the National Institute of Nursing Research, set out to meet the challenge to find better ways to support family caregivers.3 The primary purpose of the REACH II initiative was to develop and test new ways to help families manage the daily activities and stresses of caregiving for patients with Alzheimer's disease or other forms of dementia.3 Guided by the findings of REACH I,3 the REACH II intervention was designed to maximize outcomes by systematically targeting several problem areas in a flexible way such that the intervention was tailored to each individual caregiver. REACH II is believed the first of its kind to systematically assess the efficacy for a multicomponent caregiver intervention in ethnically diverse populations compared with a control group.

The study was a 6-month randomized, control trial, tested at 5 sites with more than 600 participating caregivers.3 Members of the intervention group were required to participate in 12 telephone or face-to-face sessions over a 5-month period, with a follow-up assessment in the last month of the study. The REACH II initiative focused on 5 major areas: safety, health, social and emotional support, caregiver well-being, and problem-solving strategies aimed at equipping caregivers to better manage behaviors that are common in patients with Alzheimer's disease.

The primary outcome measure for the study was a quality of life indicator composed of caregiver depression, burden, self-care, and social support measurements given at month 6 of the study. Institutionalization of the care recipient and clinical depression of the caregiver were considered secondary outcomes. Study participants included 642 Hispanic or Latino, White, and African American caregivers, who were randomly assigned in equal numbers to the intervention or control group.

Hispanic or Latino and White caregivers and African American spousal caregivers in the multicomponent intervention group experienced significantly greater improvements in quality of life than those in the control group. Overall, clinical depression was lower in caregivers in the intervention group than the control group. Race-stratified results displayed prevalent differences in clinical depression in White participants but not for Hispanic or Latino and African American caregivers.

The REACH II intervention is widely considered one of the most efficacious interventions, to date, for dementia caregivers. The intervention, however, has a number of limitations. The multicomponent intervention is complex and requires a large number of face-to-face contacts for delivery. Skilled, well-trained interventionists supported by interdisciplinary teams of scientists and practitioners delivered the intervention. These characteristics severely limit translation of the REACH II intervention into practice, especially within fee-for-service practices. Covinsky and Johnson's13 editorial on the REACH II intervention concluded that few clinicians are equipped to provide the level and intensity of support needed for dementia caregivers because of the current per office visit system under which most geriatricians work. They also embraced a widely held assumption that a team approach is vital for the successful implementation of a dementia caregiver intervention.

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The Support Team Network

The Support Team Network was created in 1994 by Malcolm Marler and was designed to work with people who needed care regardless of age, gender, or illness. The Support Team Network is founded on a team-based approach with 4 basic guiding principles: do what you can, when you can, in a coordinated way, and with a built-in support team (Learn more about The Support Team Network at http://www.Supportteam.org).

The support team members are community volunteers who provide practical, emotional, and spiritual support to anyone who is open to receiving help with their situation. The support team's principles remind volunteers that no one person can do it all but that everyone can do something to help another person. This simple, nationally acknowledged, community-based program provides the necessary yet missing component for effectively supporting dementia caregivers—a support team.

As emphasized in Covinsky and Johnson's13 review, clinicians fail to support caregivers effectively simply because they are unable to provide support at the intensity level needed and in the correct environment. Public service agencies such as Area Agencies on Aging (AAA) and Alzheimer's support service organizations (eg, Alzheimer's Association chapters) also lack the capacity to provide intense, comprehensive skills training and support to caregivers. Capacity limitations include both human and financial resources.

Caregiving is a 24-hour-a-day job, with demands and stresses coming from several areas. The per-office-visit method used in clinics and service organizations fails to provide care directly in the community—where it is needed most.

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Implementing REACH II as the Support Teams for Caregivers project

The goal of this implementation research project was to leverage the work of the support team community volunteers with the evidenced-based REACH II intervention, providing a structure for community implementation of the REACH II intervention. Translation research methods were utilized from the initial design of the project. Two implementation frameworks, REP and RE-AIM, as well as community science methods, influenced the project.

The REP model's core objective is to package evidence-based interventions to facilitate implementation in nonacademic, community-based settings. Four phases of implementation are delineated: preconditions, preimplementation, implementation and maintenance, and evolution. The REP addresses a critical need in translation research by addressing the balance between maintaining an intervention's integrity while accommodating differences across implementation sites to maximize the benefits of translation to the individual and community. The REP is rooted in the US Centers for Disease Control and Prevention's HIV behavioral and treatment interventions.

The RE-AIM framework, originally designed to facilitate consistent reporting of intervention research findings, has been used to plan for the transition of health-promotion interventions from academic settings to community settings. The 5 RE-AIM elements—reach, effectiveness, adoption, implementation, and maintenance–-create a framework to improve sustainable adoption and implementation of evidenced-based interventions. Tools in the RE-AIM framework include a list of standard questions that draw the researcher's attention to core translation research principles. Recently, RE-AIM has been proposed in the translation of caregiver interventions.14

Community science is a multidisciplinary field dedicated to building community functioning by studying health promotion, including prevention, treatment, and health education programs. Community science is conducted in real-world settings and is well suited to studying the gap between empirical findings collected in academic research and implementation of interventions to improve the health of the community. A key construct within community science is community capacity. Community capacity acknowledges that key elements within a community are necessary for the community to adopt new programs. Key elements to community capacity include, but are not limited to, skills and knowledge, leadership, self-efficacy, social capital, and culture of continuous improvement.15

Our model of Support Teams for Caregivers draws from these frameworks and methodologies to facilitate the implementation of the REACH II intervention within a community. The implementation process was structured by 6 core activities. The model, including the 6 core implementation activities, is presented in Figure 1.

Figure 1

Figure 1

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IMPLEMENTATION PROCESS MODEL

Partnering and resource allocation

Translation research requires partnerships between intervention developers (commonly, academically based researchers); service providers (public and private healthcare providers); and the community that will be served by the project. Each partner brings unique assets and has a unique relationship with the individual that will be served by the project. Acknowledging that the sum of the partnership is greater than the individual contributions of each partner, is fundamental to implementation research. Community science stresses the important role of technical assistance played by intervention developers. The RE-AIM and REP frameworks stress the importance of “reaching” into the community to ensure that the service is delivered to the target audience.

Support Teams for Caregivers is a partnership between the AAA and Scott and White Healthcare, the clinical partner of the Texas A&M University Health Science Center. The partnership provided effective solutions to common barriers faced in implementation research—lack of human and financial resources to bridge the gap between science and practice. The partnership yielded a grant application to the Johnson & Johnson/Rosalynn Carter Institute for Caregiving Caregivers Program. The application delineated the contributions of each partner. Of note, the author provided technical assistance in the REACH II intervention and implementation research. The AAA assured access to community volunteers. Funding from the grant allowed dedication of time from a caregiver specialist already working at the AAA.

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Adaptation and packaging

Community implementation of an academically based intervention or program requires that all material be translated from scientific language into lay language. Modification of the language, especially language that is discipline or theory specific, can be accomplished without threat to the intervention's integrity and achieves a solution to system-level differences between academic and practice settings. For example, the term “assessment battery” can easily be changed to “outcome measures.”

More extensive modification to the original intervention protocol may also be necessary. In some cases, specific components of an intervention may not be available outside the academic setting. For example, a component of the REACH II intervention was a computerized phone system that provided an avenue to education and social support. The system was designed and operated by the research project and is no longer available. This is not a unique situation. Rather, adapting intervention programs is often complicated by the lack of attention to dissemination issues by program developers. Likewise, community agencies, typically, have not built the capacity to implement evidence-based programs. The REP framework can be helpful in assessing the ability of the community to adapt and engage in a new program.

The Support Teams for Caregivers project repackaged the REACH II intervention components to increase the likelihood that a community volunteer could learn to deliver at least a part of the total intervention to the caregiver. A key process to the adaptation and packaging of the REACH II intervention in our project was an in-home assessment, including enrollment and demographic information and the REACH II risk appraisal measure.16 This assessment was conducted by Program on Aging and Care staff. Target areas, including education, support, and skills training for the family caregiver, were derived from the 5 major areas of the REACH II intervention, which included safety, communication skills, behaviors related to dementia, health, social support, stress management, pleasant events, mood management, and legal and medical information. Each participant was given a standardized risk appraisal for each target area. A “family profile” was tailored according to the risk appraisal and consisted of goals for the family caregiver and the support team, which were identified from the questions (see Figure 2 for an example of a family profile). The family profile structured the components of the REACH II intervention in a format that would allow any member of the support team to engage.

Figure 2

Figure 2

The family profile was presented to the members of the support team along with a Caregiver Guidebook, which was comprised of educational materials and interactive modules corresponding to all target areas. The support team leader presented the Caregiver Guidebook and the family profile to the family caregiver. Examples of the support team activities in the 12-month follow-up phase included transportation to a doctor's appointment or grocery store, household or yard chores, running errands, cooking meals, social outings, regular visits and phone calls, and providing spiritual support. Ongoing consultation was available from the Program on Aging and Care staff throughout the follow-up period.

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Engaging the target population in the community

The RE-AIM framework appropriately stresses the importance of reaching into the community to assess the impact of the program being implemented. In some cases, however, it is necessary to reach into the community to begin the program. The Support Teams for Caregivers project required that both caregivers (individuals receiving the service) and volunteers be recruited through active outreach efforts in community organizations, local churches, government agencies, and healthcare organizations. In some cases, a support team of volunteers was recruited to serve a particular caregiver (ie, caregiver-identified persons who would be contacted as possible volunteers, who, after training, were assigned to the caregiver). Importantly, community volunteers were trained in the REACH II intervention, thus building team members' feelings of confidence and self-efficacy and providing specific goals for time spent with caregivers and persons with dementia.

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Promoting and assessing fidelity

Maintaining the fidelity of the evidence-based intervention or program is a core goal of implementation research. Both RE-AIM and REP provide guidance on this topic. Replicating Effective Programs emphasizes the use of training and technical assistance. The RE-AIM framework suggests the use of assessment tools to obtain feedback from those implementing the program.

In the Support Teams for Caregivers project, 3 program evaluation/treatment fidelity tools were created. A program evaluation targeted the caregiver. Questionnaires targeted topics such as the caregiver's satisfaction with the service, the amount of service delivered by the team, and the appropriateness of the service. A separate questionnaire was administered to the support team volunteers, and a third questionnaire was developed for the support team leader (1 person is designated the team leader). In composite, the 3 self-report questionnaires provided a full assessment of the 3 components of treatment implementation: delivery, receipt, and enactment.17,18

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Assessing outcomes

It is necessary to identify outcomes that can be defined and measured. Ideally, outcomes used in the original scientific evaluation of the evidence-based intervention are used. Both the REP and RE-AIM frameworks emphasize the importance of evaluating effectiveness in implementation research. In our project, caregiver evaluations were conducted at enrollment and at 6 and 12 months after the support team was activated. Evaluations included basic demographic information, the REACH II risk appraisal measure,16 the Revised Memory and Behavior Problem checklist,19 the REACH II caregiver health and health behaviors,3 the Center for Epidemiological Studies Depression Scale (CES-D),20,21 and the REACH II social support evaluation.22–24 We were able to include a large number of measures used in the REACH II project because the author provided technical assistance. Moreover, our pilot work with community caregivers suggested that the caregivers found the assessment interview therapeutic.

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Maintaining the program

Financial support from the Johnson & Johnson/Rosalynn Carter Institute for Caregiving Caregivers Program was dedicated to the start up of The Support Teams program, including the development of training materials, intervention protocols, and outcome assessments. Efforts to maintain a successful program required additional planning and resources. One maintenance strategy is to incorporate a new program into the existing structure of the organization. The Support Teams program continues to be supported by the partner organizations, the Central Texas AAA and the Program on Aging and Care. Support teams have been established as a core program of the Central Texas AAA with dedicated staff support. Staff from the Program on Aging and Care continues to conduct the intake assessments and Dr Stevens provides consultation to the program. These activities provide training opportunities for healthcare trainees (eg, medical, nursing, and counseling students) with minimal supervision time from Dr Stevens. In addition, private philanthropy is being sought to support a volunteer recruiter/coordinator. Support teams, however, provide only a partial answer to the needs of family caregivers. The growing public health crisis created by the demands placed on family caregivers will require a coordinated response from federal and state agencies (eg, Medicare and Medicaid), private healthcare insurers, and not-for-profit community service organizations.

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CASE STUDY

A case study from the Support Teams for Caregivers Project

Mrs T is a 57-year-old White woman whose husband was diagnosed with Alzheimer's disease. When Mrs T was referred to a support team, she was overwhelmed and suffered from symptoms of clinical depression because of her caregiving roles. Her husband had recently been admitted to the hospital with severe health problems and she was deciding whether to place him in a nursing home. The decision to place a loved one in a nursing home facility is particularly stressful for the caregiver, who generally experiences many complex ambivalent emotions, including guilt.25

Her support team was comprised of 5 members, 2 of whom served as partner volunteers. The team met approximately every 6 to 8 weeks and for the first 6 months they set priorities as a team to focus on with Mrs T. During these initial meetings, Mrs T was described as overwhelmed, disorganized, and struggling with excessive guilt because of her need to place her husband in a nursing home facility.

From the baseline assessment, a family profile was created (Figure 2). The team used the family profile to identify several major areas that caused her distress, including feeling stressed and burdened by her many caregiving responsibilities; having little time to participate in pleasant events; difficulty taking care of her own personal health; and feelings of sadness, anger, and depression because of her husband's problem behaviors. She scored in the high-risk range on the (CES-D),20,21,26 a self-reported depression scale, indicating an alert for clinical depression.

Throughout the 12-month follow-up, the team was able to help Mrs T in multiple areas as a caregiver. One of those areas was stress management; it was able to work with Mrs T to help her become more organized in her caregiving responsibilities and to aid in managing the stress that her caregiving caused. The team also referred Mrs T to a financial advisor to help her manage her finances and work with the stresses that came with placing her husband in the nursing home.

Another area in which the team was able to make a difference was in Mrs T's social support system. After a year in the team program, Mrs T reported a decreased sense of isolation and stated that her support system had doubled in size. At baseline, the area of social support was a significant stress in her life, in that she only had a handful of people in her life that she could call on for help with her caregiving role. However, with the help of the team, she was able to stabilize her stress by joining a gymnasium and becoming more active in her community through local church activities and political campaigns, which not only increased her interactions with other individuals but also improved her overall physical health.

Another improvement in her physical health involved helping her attend her medical appointments. At the baseline interview, Mrs T stated that she had not had a routine medical checkup for over a year. However, during the 12-month follow-up period, she was able to see her primary care doctor, optometrist, and dentist for annual checkups.

One of the most significant improvements observed in the follow-up period was in Mrs T's depression. At follow-up, her CES-D score decreased by 13 points, placing her in the low-risk range for clinical depression. With the help of her team, she reported feeling generally happy most of the time and a decrease in the time she was angry or frustrated because of her caregiving responsibilities. Also, when asked, “in the past month, have you felt depressed, sad, had crying spells, or felt like you often needed to cry?” She said she “always” felt that way at baseline; however, at follow-up she answered “sometimes.”

Overall, at follow-up the team noticed that Mrs T was relaxed, more physically fit, and smiling. She expressed an increased feeling of competency in her abilities to care for her husband. She had adjusted to the transition of placing him in a nursing home and was still able to have him stay at their home a couple of nights a week.

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CONCLUSION

To date, 7 support teams have been formed to assist caregivers. The caregivers, 6 females and 1 male, were identified through active recruitment methods, such as advertisements through local churches and newspapers. Two care recipients of these caregivers were placed in a nursing home or long-term care facility within a year. The support teams that supported the 2 caregivers during the transition from the home to a nursing facility, which is usually characterized by high levels of stress for the family, served as a great support and help and the caregivers continue to function well in the community. A second cohort of volunteers is now being recruited from faith-based groups in our area. Our goal is to establish at least 10 teams per year.

In conclusion, providing help to family caregivers of dementia patients is a challenge that most clinicians, interventionists, and communities fail to fully address. Furthermore, providing a complex system of psychosocial, medical, and emotional supports to the caregiver and care recipient is challenging without the use of a multidimensional intervention available in community settings. The Support Teams for Caregivers project, an example of implementation research presented in this article, displays the feasibility of reaching into the community with an evidence-based intervention. Delivering such intervention provides an accessible, needed, and usable tool for family caregivers of dementia patients.

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Keywords:

caregiving; evidence-based interventions; implementation research

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