Family caregivers -- including relatives, friends, neighbors, and others who provide unpaid support -- perform immensely valuable work, helping older adults with chronic disabilities get the help they need at home, rather than entering a facility. Recently, the Office of the Assistant Secretary for Planning and Evaluation (ASPE) funded a study that combined 2004 National Long Term Care Survey Caregiver Supplement data with Minimum Data Set (MDS) data to examine the impacts of caregiver stress on nursing home use (Spillman & Long, 2009). Results showed that caregiver stress was the most powerful predictor of an extended nursing home stay, accounting for about a quarter of nursing home entries from the community.
Of the dimensions of caregiver stress, physical strain followed by financial hardship, was the most powerful predictor -- higher than emotional stress or social constraints. Nearly a third (31%) of caregivers reported that caregiving is a physical strain. Caregivers interviewed for the survey indicated that physical strain from activities such as lifting and transferring was a big problem for them. In addition, over 50% of the caregivers surveyed were over the age of 65, which raises their risk of physical strain when they provide this assistance.
The problem of caregiver physical strain has received little attention in family caregiver support efforts, with most programs focused on emotional support or respite. The U.S. Department of Health and Human Services' ASPE contracted with the Lewin Group and our consultants, Drs. William Mann and Majd Alwan, for this study to lay the groundwork for accelerating the use of assistive technology (AT) and home modifications (HM) to reduce caregiver physical strain. The study has two components. For the research component, the study team conducted a systematic literature review to assess and synthesize the evidence base that AT/HM reduces family caregiver physical strain. Drawing on findings from the review, in the adoption/dissemination component, we developed user-friendly resources and recommendations to encourage and facilitate the National Family Caregiver Support Program (NFCSP) to include appropriate services to reduce caregivers' physical strain, as part of the range of services they offer. This project is funded through one of several provisions in the American Recovery and Reinvestment Act of 2009 to advance the use of technology to support older people and their caregivers.
The project focused primarily on the NFCSP as a dissemination venue because this large federal program is where many family caregivers go for support. Established in 2000 as part of the reauthorization of the Older Americans Act (Title III E) and administered by the Administration on Aging (AoA), the NFCSP funds services to support family caregivers caring for people age 60 and older and people of any age with Alzheimer's disease or related dementia. The program also supports grandparent/ relative caregivers of children and of adults under age 60 with disabilities. Allowable services include information, assistance with accessing services, counseling, support groups, training, respite, and supplemental services, which include AT/HM, transportation, medical supplies, and other services.
This final report summarizes results from all study activities. Part I is the full literature review report. An annotated bibliography of studies included in the literature review is provided in Appendix A. Part II is the report from the adoption/dissemination stage of the study, and Appendix B and Appendix C are the two guides developed to educate family caregivers and NFCSPs about AT/HM to reduce caregiver physical strain. Results of an online survey conducted by the Family Caregiver Alliance (FCA) are presented in Appendix D.
Systematic Review of the Research Literature
The first component of the study was a review of the literature to assess and synthesize the evidence base on the effects of AT/HM on reducing family caregiver physical strain. Much of the research and activity on promoting technologies to reduce caregiver injuries/physical strain has focused on paid caregivers (e.g., nurses, nurse aides, orderlies), particularly those working in nursing facilities and hospitals. Thus, we examined the literature on outcomes among paid caregivers in institutional and home and community-based settings to identify implications for family caregivers. We also examined the literature on the impact of AT/HM on increasing independence of older adults living at home, because any device that increases independence for the care recipient is likely to simultaneously relieve the burden for care providers (Mann, 2001). Finally, we reviewed the small but growing body of literature on AT/HM interventions that focus on family caregivers directly.
To identify relevant published and unpublished studies, we combined a search of the academic literature in PubMed/MEDLINE with a targeted Internet search of websites with information about technology and long-term care. Additional studies surfaced through other sources, including examination of reference lists of included studies, conference proceedings, and discussions with members of the study technical advisory group and caregiver advisory group.
Development of Strategies for Increasing Dissemination of AT/HM
To develop recommendations for increasing the dissemination of AT/HM to reduce caregiver physical strain to a wider audience of family caregivers and service providers, we conducted webinars/teleconferences, site visits, and telephone interviews with experts and stakeholders.
Information about innovative strategies and recommendations for addressing caregiver physical strain were obtained through a combination of webinars/teleconferences, site visits, and telephone interviews with technical experts, family caregivers, and NFCSP staff. In addition, program officers from ASPE and AoA, along with two consultants with expertise in the design and use of AT/HM, provided input throughout the project (e.g., participating in webinar discussions, commenting on report drafts).
First, we recruited a technical expert panel (TEP) of AT/HM experts and a Caregiver Advisory Panel (CAP) of individuals with both personal caregiving experience and knowledge of broad family caregiving issues. The study team met with the TEP by teleconference/webinar in January 2010. This was followed by a teleconference/webinar with the CAP in February 2011. These discussions provided the opportunity to garner input on the draft literature review. We also met with some key experts individually by phone. In December, 2011, we convened a joint meeting of the TEP and CAP, which provided opportunity to elicit input from both groups on drafts of the two guides developed through this project and recommendations for future initiatives.
To learn about strategies for accelerating the use of AT/HM to mitigate caregiver strain through the NFCSP network, we conducted site visits to 11 NFCSP programs in person (Connecticut, Maryland, Pennsylvania, Utah) or by phone (Alabama, California, Hawaii, Illinois, Indiana, Iowa, Wisconsin). The sites represented diverse experiences with AT/HM. They included: programs using advanced/innovative approaches to providing AT/HM to family caregivers; sites that were interested in the area, but not sure how to initiate a program; and sites with no efforts specifically focused on promoting AT/HM. The selected programs also represented diverse geographic regions. We interviewed NFCSP administrators, managers, case managers (CMs), and participants at program offices and in the homes of older adults and family caregivers to gain deeper understanding of caregiver needs related to physical strain as well as effective solutions. The visits took place between June and November 2011. Information gained from the site visits was used to develop the NFCSP strategy guide. Site visit participants were asked to review a draft of this guide and provide feedback through an online tool.
After meeting with the joint TEP/CAP panel and incorporating their input on draft documents, the next step was to convene a panel of 11 NFCSP program representatives. The panel was convened in October 2011. Participants provided input on suggested strategies and resources for NFCSPs that emerged from the site visits, as well as recommendations for additional policy and research activity to accelerate the use of AT/HM to reduce caregiver physical strain. The NFCSP panel was asked to review the guides developed through this project and to provide feedback through an online tool.
Finally, the FCA conducted an online survey of family caregivers on the use of AT, which was fielded over six months. A snowball sampling methodology was used to recruit a convenience sample of family caregivers to complete the survey through the FCA, Aging and Disability Resource Centers (ADRCs), and some Area Agencies on Aging (AAAs). A total of 423 surveys were initiated. The survey inquired about experiences and needs related to AT/HM, training on the use of AT/HM, and caregiver physical strain. The Lewin Group was able to analyze those survey results for this final report.
Key Findings from the Literature Review
Findings from Facility-Based Studies
Most of the research on AT/HM to mitigate caregiver strain has been conducted with caregiving staff in nursing facilities and hospitals, while physical strain among family caregivers has received less attention. Although family caregivers perform many of the same services as caregiving staff in nursing facilities and other settings, caregivers at home are less likely to have access to assistive devices such as mechanical lifts that can help protect them from physical strain associated with caregiving. The studies based in nursing facilities and hospitals examined the effects of mechanical aids for lifting and transferring on caregiver strain. The devices were often provided in combination with other interventions such as training in device use, collaborating with caregiving staff to assess the need for AT, and "zero lift" (avoidance of manual lifting) policies. Significant positive impacts were found on reducing caregiver injuries, resulting in fewer lost workdays and long-term cost savings, and increased feelings of comfort and safety for people receiving care. These studies also reported the danger of increased caregiver injury resulting from lifting a minimal or non-weight-bearing person without a mechanical device. Important factors affecting program success included ensuring sufficient time and training to use the equipment and overcoming caregiver resistance to using new devices.
Findings from Studies with Home Care Workers
A small number of studies examined the use of assistive devices among home care workers who assist older adults living at home. In contrast to facilities, large devices such as mechanical lifts are less available in home settings where home care workers and family caregivers provide care. However, one pilot program in Canada (Craib et al., 2007) used a registry of loaner lifts as an affordable way to provide home care workers with access to ceiling lifts.
Of the few studies with home workers, most focused on the use of back-belts, and the research on the effectiveness of these devices has been mixed. In the TEP panel discussions, an expert indicated that gait belts and slings could be used, but only if the care recipient was partially weight-bearing. Waters (2007) discusses the National Institute for Occupational Safety and Health (NIOSH) lifting equation guidelines and how they relate to safe patient-handling. The guidelines state that caregivers should not lift more than 35 pounds of a patient's weight; therefore, if a patient is non-weight-bearing, they should use AT. In a NIOSH (2009) publication on Safe Patient Handling Training for Schools of Nursing, an algorithm is presented for lifting patients. They suggest that if the patient can partially bear their weight and is cooperative, then the caregiver can use a gait/transfer belt or a power-stand assist lift for the transfer.1
Findings from Studies with Older Adults Living at Home
Several experimental studies tested the benefits of providing older adults living at home with occupational therapy (OT) interventions, including AT/HM. A key element of these interventions is a person-centered approach, in which OTs assess the home and work with the older person to identify solutions to increase their capacity to age in place. All of these studies found positive results, including user satisfaction with the devices, reduced functional decline and improved functioning, reduced depression, reduced need for paid assistance, and lower expenditures for nurse and case management visits. Although this decreased need for assistance would likely reduce physical strain for caregivers (because they would be providing less care), it was not directly measured in any of the studies. Many of the devices used were low-cost, such as hand-held showers, reachers, grab bars, nightlights, and tub mats. These studies highlight the importance of assisting older adults with proper assessment of the need for AT/HM and raising awareness and acceptance of new technologies, because many older adults and family caregivers were unaware of available AT/HM solutions that might assist them. Older adult receptivity to using AT/HM was related to both the characteristics of the device, such as intrusiveness, and the characteristics of the older adult, such as social support. Also important was the capacity of service agencies to provide AT/HM to older adults, including CM and social worker (SW) training on the benefits and uses of AT/HM, and the time allocated for tasks related to these services.
Findings from Studies with Family Caregivers and Dyads
Studies testing the provision of OT services including AT/HM to family caregivers or family caregiver/older adult dyads reported positive results of this approach. Benefits included less need for assistance, reduced caregiver burden, less time spent caregiving, decrease in caregiver depression, enhanced caregiver skills, enhanced caregiver ability to self-care, fewer problem behaviors of people with dementia, and reductions in health care costs. However, none of the studies directly measured impacts on family caregiver physical strain. Similar to the studies with older adults, these studies demonstrated the effectiveness of small, low-cost devices. The most common HMs needed included enhancements to bathroom safety (grab bars, walk-in shower, hand-held showerhead, shower seat); modifications to address the older adult's memory loss (additional lights, signs, and labels); and devices for activity engagement. Family caregivers' ability to implement HM was related to attributes of the modification (e.g., the cost, ease and comfort of use), attributes of the caregiver (skills, personal resources, available supports, younger age, early adopters of technology), and the quality of the caregiver-older adult relationship. Additionally, this research highlights the importance of effective caregiver training on technology use, person-centered approaches that involve both caregivers and care recipients in identifying solutions, and CM/SW knowledge of AT/HM for family caregivers.
Conclusion and Research Gaps
The evidence suggested that a wide range of AT/HM could help prevent strains and other injuries among caregiving staff in facilities,enhance functioning and independence of older adults, reduce the need for assistance, and reduce various aspects of caregiver burden. Many of the programs found to be successful used a person-centered approach that included assessing the care recipient's environment and needs, identifying solutions, training in the use of AT/HM, addressing injuries, and assessing results, in many cases including OT.
However, additional research is needed to directly measure outcomes on physical strain among caregivers in the home. Also, additional research is needed to assess long-term impacts of various types of devices on different aspects of physical strain among family and paid caregivers in the home setting and their cost impacts. Also needed is additional research on how to overcome barriers to more widespread adoption of equipment and safe handling practices that have been found to be effective in reducing physical strain. Finally, more research is needed to develop technologies designed for use by older adults and their caregivers in the home.
Key Findings from Experts and Stakeholders
Findings from the FCA Online Caregiver Survey
The online caregiver survey showed that many caregivers are purchasing AT/HM and find it useful. However, findings also suggested a need to raise awareness of available AT/HM, to address caregivers' concerns about costs, and to offer caregiver training on AT/HM and techniques to minimize physical strain. The Internet, physicians' offices, and AAAs were the top places where caregivers go for information on AT/HM.
Strategies and Resources for Family Caregivers and NFCSPs
The site visits and discussions revealed many tips and resources that can help family caregivers reduce their risk of physical strain, assess their homes, and select, access, and pay for AT/HM. We also identified a number of innovative strategies and resources that the NFCSP network can use to assist family caregivers with AT/HM.
As a first step in disseminating this information, the study team developed a guide for family caregivers and a guide for NFCSPs. Each guide will be made available in both a print handout version and an online version and disseminated through ADRCs and various other channels. In addition, research findings from this study have been or will be presented at three national conference.2 Also, findings were presented in a guest blog on http://www.disability.gov, which is operated by the Office of Disability Employment Policy (ODEP) and has nearly 30,000 followers. Results will also be shared at a retreat of the National Association of Community Health Centers in January 2012 and the Greater Wisconsin Agency on Aging Resources Conference in September 2012.
AT Expert Panel and Caregiver Advisory Group Suggestions for Adoption/Dissemination Strategies
In discussions with experts and stakeholders, consensus emerged that accelerating the use of AT/HM to reduce physical strain among family caregivers will require a comprehensive dissemination strategy. Building on the dissemination of the resource guides developed through this project, additional recommended strategies for dissemination included:
Developing multiple informational resources (e.g., videos, brochures, training courses on AT/HM and preventing physical strain).
Disseminating the information through multiple channels (e.g., online, physicians' offices, community organizations, the media).
Reaching multiple target audiences (e.g., family caregivers, CMs and SWs who work with caregivers, physicians, builders, and contractors).
A suggested next step was to convene a national meeting of a wider group of stakeholders involved in AT/HM for older adults and their caregivers, to develop and carry out a dissemination plan. Panel participants noted that this could provide opportunity for the AoA Aging Network to establish new partnerships.
AT Experts and Family Caregiver Advisory Group Suggestions for Policy
In addition, panel participants agreed that overcoming barriers to family caregiver use of AT/HM will also require changes to several aspects of health, long-term care, and housing policy, including:
Challenges to accessing AT/HM should be addressed within programs that offer and/or pay for some AT/HM services (e.g., Medicare, Medicaid, U.S. Department of Housing and Urban Development (HUD) housing assistance programs). Experts and stakeholders recommended expanding coverage to include a comprehensive array of AT/HM, to respond to individual needs for support to retain independence and live at home. In addition, these programs need to be better aligned in support of the common goal of supporting family caregiving and community living for older adults.
Another frequently mentioned recommendation was to expand coverage in public programs for OT and physical therapy (PT) services. OTs can provide in-depth assessment of a person's home and suggest specific solutions that could help the person maximize function and retain independence.
Another issue raised by several panel participants is the need to modify housing and zoning laws to support aging in place and multi-generational living and to enact policies encouraging universal design in new construction.
Suggestions for Future Research
The discussions indicated two broad areas where additional research is needed:
To develop and expand AT/HM efforts, additional research will be needed to identify effective approaches and evaluate their impacts on reducing caregiver strain, increasing independence of the care recipient, and saving costs. These research questions could be addressed through a potential demonstration project.
Also needed is additional research to develop and test new AT/HM products designed specifically for family caregivers and older adults living at home. Panel participants discussed that one of the barriers to using AT/HM is that many products are designed for use in institutions, rather than in the home.
The above recommendations suggested by experts and stakeholders are supported by the research literature. Implementing these actions to encourage the use of AT/HM to reduce caregiver physical strain would also support recent federal efforts to promote community living, evidence-based health care, and cost savings.
Craib, K., Hackett, G., Back, C., & Cvitkovich, Y. (2007). Injury rates, predictors of workplace injuries, and results of an intervention program among community health workers. Public Health Nursing, 24(2), 121-31.
Mann. W.C. (2001). Potential of Technology to Ease the Care Provider's Burden. Rehabilitation Engineering Research Center on Aging. Report for National Institute on Disability and Rehabilitation Research, U.S. Department of Education.
NIOSH. (2009). Safe Patient Handling Training for Schools of Nursing. NIOSH Publications and Products. Retrieved from: http://www.cdc.gov/niosh/docs/2009-127/.
Spillman, B.C., & Long, S.K. (2009). Does high caregiver stress predict nursing home entry? Inquiry, 46(2), 140-161.
Waters, T. (2007). When is it safe to manually lift a patient? American Journal of Nursing, 107(8), 53-59.