Several studies and research groups internationally have identified the key features and components of interventions and programs that increase the likelihood of successful outcomes in caregiver interventions. By looking at these various recommendations, a sense of what constitutes “better practices” that are empirically based can be gained and can help serve as a framework for planning translational adaptation of research trials into community based programs.
The Michigan Dementia Coalition (Cameron, Massuch, & Wishart, 2008), as part of their state plan to “Increase support for family members who provide care for persons with dementia at home” formed a Caregiver Support Workgroup (CSW) that reviewed evidence-based interventions for caregivers of individuals with dementia and came up with a set of recommendations for based on their review. The following are their recommendations for “effective interventions for caregivers of persons with dementia:”
- Conduct Assessments. Complete a thorough assessment of the caregiver and the caregiving situation to determine an effective intervention plan that is best suited for the individual circumstance.
- Utilize Multi-Component Interventions. Using multiple interventions or techniques simultaneously increases the chances of effectively addressing the variety of caregiver needs.
- Offer Interventions with Higher Intensity. The frequency and duration of intervention contacts or events are important considerations. More frequent contacts or events over a longer period of time are more likely to alleviate caregiver depression and care receiver symptoms.
- Promote Consumer-Directed Interventions. Caregivers who have more choice, control, and flexibility in their home care options are significantly more satisfied with overall service options which can reduce premature nursing home placement of the care receiver.
These four recommendations are highly complementary to four “characteristics of effective interventions” that Zarit et al (2008) lay out. The recommendations are that studies be/use:
- A psychological rather than purely educational approach. Educational interventions assume behavioural changes arise from new knowledge whereas psychological or psychotherapeutic interventions actively apply the information and allow for participants to practice new skills, gain feedback and develop plans for implementation in particular situations
- Multidimensionality. Interventions that are multidimensional offer the best options at addressing the complexity of caregiver stress and burden
- Flexibility. Caregivers have different needs across time and circumstances, so interventions that can be adaptive not only to the variability across caregiver groups and backgrounds but also across the evolving caregiver needs have shown promising outcomes
- Sufficiency in the amount or dosage. Providing adequate support for caregivers is essential in realizing the goals of an intervention. A challenge identified in many of the studies, especially in respite, is understanding how much of an intervention is sufficient to address caregiver strain.
Effective programs appear to share several characteristics. Specifically, the following factors have been associated with the most positive outcomes for family caregivers. These factors should be carefully studied and built into efforts to support family caregivers:
- Contact with a helper over time
- Contact with a helper who has specific intervention protocols to follow
- Interventions and care plans tailored to the caregiver’s specific needs
- Multi-component interventions that include a combination of knowledge, skill building, problem solving and counseling
- Interventions with higher intensity (e.g. greater frequency and duration)
- Using a combination of home-visiting, telephone follow-up, internet and telehealth technology to deliver, and,
- Programs developed and implemented locally and involving agency collaboration.
These components, while from different origins, are remarkably consistent and complimentary with one another. The overarching theme that appears to define the landscape of caregiver interventions is that one size does not fit all; that one single solution or intervention is not sufficient to address caregiver needs in providing care to older adults. Remarkably, the importance of finding out from care givers themselves what their determinants of well-being are as well as the stated aims they may have when seeking out assistance in the first place has been largely overlooked in the formal academic literature on caregiver interventions.
Alongside the difficulty in identifying effective interventions in the experimental context is the challenge of how best to translate the knowledge and the program /intervention from an experimental study into a community program. The realities of community programs/interventions include limited time/resources of staff to carefully measure/evaluate individuals as well as the variety in training levels of individuals delivering the intervention(s), their level of adherence, as well as the diversity of caregivers. The critical balance required between making a program effective (i.e. true to the components that had an actual clinical effect) and making a program accessible to the community (i.e. allowing for potentially more variability in who can benefit from the program) is one that is still being sought after in the field of translational research. Several of the recommended programs, most notably the REACH II and NYUCI have undergone replications/modifications for deployment in various community settings (Burgio et al., 2009).
The REACH II study gave rise to the REACH OUT (Offering Useful Treatments) intervention which has provided valuable insights into translating a multicomponent caregiver intervention in the context of “real world” challenges(Burgio et al., 2009). Case managers who were involved in the REACH OUT program stated that the effectiveness of the intervention may have been enhanced if there were staff dedicated specifically to the REACH OUT program as carrying existing workloads on top the REACH OUT program of activities made management of cases difficult. Materials related to content that case managers suggested be included as part of the caregiver education modules included topics such as communicating with doctors/health professionals, bereavement and information geared towards younger caregivers. Further, information geared towards female older adult caregivers and their responsibilities associated with caregiving was highlighted as an area for future development.
The large number of programs and interventions for caregivers that exist require the combination of being able to understand the broader types of categories, as outlined above, as well as the assessment of quality of the evidence underpinning programs/interventions. Even with the knowledge of both, a framework for being able to translate the experimental studies into practical programs can be daunting. One approach put forth by Schulz et al (2005) lists four components of practical significance to selection of interventions:
- Effects on symptomatology
- Quality of life of CG/CR
- Social Significance
- Acceptability to clients (social validity)
Another more comprehensive framework for translation of research interventions into community based caregiver programs is the Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM) framework. In a report prepared by the Centre for Disease Control (2008), the overall aim of the RE-AIM Framework is described as being able “to focus attention and critical thinking on essential program elements that can improve the sustainable adoption and implementation of effective, evidence-based programs and policies.”