Findings from Online Caregiver Survey
Although the survey was not representative of all caregivers, the demographic profile of respondents was similar to that reported in other research (87.4% women, average caregiver age 57, average care recipient age 72).
Nearly 61% said they had used an assistive device, most commonly mobility aids, bathing aids, medication assistance, and toileting aids. In addition, 83.8% had used technology for calling for help in an emergency. In the majority of cases, the caregiver or another family member paid for the AT themselves. Reasons for not using AT included a lack of awareness, not needing it, and costs. A similar portion of respondents (62.8%) had used HMs, which were also paid for primarily by family caregivers. Most respondents said that the AT/HM was very helpful. Although 67% said they experienced moderate or heavy physical strain from caregiving, most (59.4%) had not received training on device use or techniques to minimize the risk of physical strain. The most frequently mentioned source for information on AT/HM was the Internet (67.4%), followed by physicians (47.3%) and AAAs (37.9%).
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 information and strategies that emerged from this study, the research team developed a guide for family caregivers (Appendix B) and a guide for NFCSPs (Appendix C). Each guide will be made available in both a print handout version and online version and disseminated through NFCSPs, ADRCs and various other channels. In addition, research findings from this study have been presented at several national conferences. Also, findings were presented in a guest post on http://www.disability.gov, which is operated by ODEP and has nearly 30,000 followers.
Strategies and resources for family caregivers
Major barriers mentioned in both the TEP and CAP discussions, as well as in the literature, included a lack of awareness of safe handling techniques and available AT/HM and fears of technology. As one CAP member discussed, most caregivers are thrust into their roles as caregivers; they lack time to prepare for their caregiving responsibilities, including time to learn about AT/HM. Another member pointed out that, in some instances, it could be a simple matter of introducing the caregiver to the technology. As one TEP member commented, "We could do a lot to improve people's lives by raising consciousness that physical strain does not have to be a part of caregiving and that it is modifiable." Many caregivers do not realize that they can do something to reduce their physical strain.
A related barrier, noted in the TEP discussion, is a tendency of many caregivers towards "over-helping." This suggests that efforts are needed to educate caregivers and care recipients on ways to support the care recipient's independence, which can also be one of the more cost-effective solutions to reducing strain. Training in techniques for communicating with persons with dementia could help reduce physical strain resulting from miscommunication and conflicts when caring for this population.
TEP members commented that renters are more likely than owners to be reluctant to make physical changes to their homes, because they have less control over their settings, and 20% of older people live in rental housing. However, the group noted that under fair housing law, landlords must allow people to make reasonable modifications in their homes. In many cases, after contacting the landlord, renters have installed AT/HM without any problems.
Our research uncovered many resources that can assist families with AT/HM, including guides and checklists for assessing home safety, sources of information on choosing AT/HM, and general caregiver support resources. Other potential sources of assistance include primary care physicians (PCPs), occupational therapists, local aging service providers, Centers for Independent Living (CILs), State Assistive Technology Projects, and AT re-use programs.
Strategies and resources for NFCSPs
The site visits and panel discussions suggested a number of steps that the Aging Network can take to increase access to AT/HM to reduce family caregiver physical strain. Many NFCSPs, in conducting home visits, look for AT/HM that the family may need. Phone assessments may be necessary in difficult to reach, rural areas. A strategy that several programs have found helpful is for CMs or family caregiver specialists to bring along samples of commonly used AT that caregivers can try, such as a shower bench. Some programs use assessment forms or checklists, which can help staff with assessing a caregiver's need for AT/HM. After the initial assessment and selection of AT/HM, program personnel noted the importance of following up with caregivers over time to ensure the usefulness of the equipment and its correct use. In some instances, the NFCSP conducts the initial assessment and then refers to another provider or organization for more in-depth assessment as needed. Many potential partnerships for assessments were suggested, including occupational/physical therapists, RNs, home health agencies, rehabilitation services, vocational rehabilitation agencies, care transitions teams, disability organizations, and state AT projects. Community colleges that provide training programs and continuing education courses for home health aides could be a way to reach this workforce, in addition to online training programs.
To help families find a contractor to complete the HM, NFCSPs can form relationships with local businesses, in order to refer people to providers who others have used and who have a proven record of good results.
To help make AT/HM affordable and accessible, many programs include AT/HM in the array of services provided with NFCSP Supplemental Services funds. Another way to help caregivers access AT is to build or refer to an AT re-use or lending program. Agencies can also leverage some of the many other potential funding sources for AT/HM.
Another recommendation was for programs to conduct outreach to raise awareness of existing resources to address caregiver physical strain among family caregivers, physicians, and other health and human services providers. This could be done by partnering with various community organizations to disseminate information to caregivers or presenting information at events and locations in the community where older adults and family caregivers go such as physicians' offices, places of worship, and senior centers.
Panel Suggestions for a Dissemination Strategy
The expert, caregiver, and NFCSP panels were asked their recommendations for expanding dissemination to reach a wider non-academic audience. Participants discussed general recommendations pertaining to an overall dissemination strategy, as well as specific suggestions for dissemination aimed at distinct target audiences.
Overall dissemination strategy
Panel participants noted that different materials are needed for different purposes. TEP participants recommended providing objective, evidence-based materials to inform caregivers and the public about AT options.
An idea that was discussed was to produce multi-media implementation guides and educational materials for the effective interventions targeted, if applicable, at each of the potential user groups: family as well as professional caregivers. The educational materials and implementation guides could use video and web technology and be disseminated through leveraging existing resources including ADRCs and AoA's Family Caregiver Support Programs, and possibly on AT product databases such as AbleData, TechForLTC, Center for Aging Services Technologies (CAST) Clearinghouse, and caregiving websites such as the FCA.
A frequently mentioned example was the training component of the Aging in Place/Better Living at Home program in Howard and Montgomery Counties, Maryland. The program is developing training programs for three audiences: (1) video-based trainings for professionals including occupational therapists, physical therapists, and SWs; (2) video-based learning for staff at AAAs and other social service agencies, to help with determining the need for a referral to OT; and (3) for the general public, an informational resource providing neutral information on the pros and cons of the various types of AT/HM that are available. A representative of the program noted that it will take a non-academic approach to training; the videos will include real-life caregivers in the context of the home. The videos will be short (about 3-5 minutes) and available online.
Panel participants discussed that partnerships between AAAs and ADRCs and other disability organizations, in particular, could provide a useful opportunity for the aging and disability communities to learn from each other. They noted that, compared with older populations, the younger disability population has tended to be more assertive in advocating for systems change. The disability perspective could be useful for AoA to consider in these areas, and perhaps the groups could collaborate to develop mass education campaigns that could support each other.
Other suggested partners or opportunities include:
The U.S. Food and Drug Administration, which is working on an effort to provide consumer information on medical devices (U.S. Food & Drug Administration, 2011).
Centers for Medicare and Medicaid Services (CMS) Innovation grants, established through the Patient Protection and Affordable Care Act, which seek to improve costs, quality, and access.
The U.S. Department of Agriculture extension services with universities, which work on aging issues. Some AAAs have established connections with these organizations, but in some cases that connection has not been made.
Dissemination to family caregivers
Participants identified four issues that dissemination efforts will need to address, in addition to providing AT/HM, to ensure that the equipment is used and is helpful: (1) assessment of home safety and AT/HM needs, including re-assessment over time; (2) acceptance of AT/HM, including overcoming common concerns such as renter issues, fear of losing benefits, concerns about the look of the devices, and the concern that a device may symbolize disability and desire to maintain a sense of normalcy; (3) training on how to use the AT/HM and training in communication with persons with dementia, as well as retraining as needed; and (4) proper installation -- the group discussed that contractors and handymen vary in their knowledge of how to properly install assistive equipment.
Experts and stakeholders suggested a variety of materials to provide information for family caregivers. Families need repeated exposure to the possibilities of AT. A layering strategy with public health campaigns to normalize the use of these products was mentioned as an important component. The comment was made that these materials could empower families to help themselves.
Panel members also noted the need to make materials available in multiple languages and to ensure that materials are at a reading level that the average person can comprehend.
Websites: TEP and CAP participants agreed on the need for better tools and resources to inform families about AT/HM. They commented that although many websites address AT/HM, many of these sites are not very useful to family caregivers. A noted problem is that, although several websites are available that provide caregivers with information about AT products and services, they are often tied to marketing for a company's products. These websites do not provide objective guidance to help caregivers decide what they need or results of rigorous scientific evaluation. The suggestion was made to create a clearinghouse of information that would be a website or single source where caregivers can search by topic and get information on assessments, available AT, and videos.
Videos: Panel participants suggested that simple visuals are best to get information across to the public and professionals alike. They noted that people want neutral information without marketing or advertising. The FCA identified over 100 training videos, but most were determined to be poorly presented or low quality production. A comment was made that videos can be powerful and helpful in getting the message across effectively and time-efficiently, as caregivers are likely to be short on time. An example mentioned is an aging services provider that is using its Distance Learning Center to provide free video-based education (http://www.mmlearn.org/). Social media was suggested as a possible mechanism for disseminating the videos.
Tools: The suggestion was made, in addition to the videos, to offer a tool such as a decision-making tree as a person-centered way to assist families in decision-making.
Consensus emerged on the need to embed information in different places in order to reach a wide audience of caregivers, including those who are paying privately for AT/HM and who are not connected to AAAs. Many possible venues and strategies for reaching family caregivers were suggested:
Existing caregiving and AT/HM websites, blogs, conferences, newsletters, and mailing lists.
Home improvement stores (e.g., Home Depot, Lowes) could be asked to provide a display, handouts, and/or videos on aging in place in the stores.
Disease-specific websites, such as the MS Society.
Health care providers, including orthopedists, chiropractors' offices, and community health centers.
HMOs and long-term care insurance providers.
Villages and NORCs, which screen service providers and help residents obtain services.
Group settings, as in Skills2Care, a home-based OT program to improve the well-being and skills of family caregivers that is available as an individual or group class (Jefferson Elder Care, 2011).
PACE programs, which provide more integration of services, and care teams that could include occupational therapists.
Mass media was also considered; however, panel participants noted that this is expensive and has a "dissolve effect." However, short 1-minute tips on a cable channel were mentioned as a possible strategy. Television/radio public service announcements were also suggested. Another idea was media outreach targeting specific writers who might be interested in this topic and appearing in op-eds and newspaper articles. Another idea was to convene a Congressional briefing and invite reporters.
Panel participants also suggested going to places where caregivers are, such as houses of worship, barber shops, waiting rooms of doctors' offices, local caregiver associations, and libraries.
Ideas included working with utility companies to include information in utility bills, working with fire departments to give people information when they visit people's homes, working with Chambers of Commerce to reach employed caregivers in the workplace, disseminating information through caregiver coalitions and respite care coalitions, and working with disability organizations, vocational rehabilitation agencies, pharmacies, volunteer organizations like Rebuilding Together, and hospital discharge planners.
Dissemination to CMs, SWs, and NFCSPs
The TEP and CAP panels generally agreed that the focus needs to be on CMs and SWs, because they spend the most time with older adults and family caregivers. As a TEP member noted, CMs work directly with caregivers and see a lot of things; training and resources could help them be comfortable giving referrals. However, AT/HM is not typically taught in schools of nursing or social work. One participant commented that aging services tend to foster a dependency model, with the focus on the need for help, rather than how to maximize capacity. Often, workers do not think of AT/HM as one of the ways they can help a person.
Staff at one of the visited sites recommended that CMs look at the home and educate caregivers about the relationship between the home environment, health, and function, because their job includes supporting people in the home. In addition, they advised reminding staff that they do not need to know it all and can lean on other providers -- to see their job as identifying issues, not performing the services.
The consensus was that advancing the use of AT through the NFCSP must involve more than leaving a brochure or a link to a website. Caregiver acceptance of technology will require raising awareness among the NFCSP network about the value of technology and capacity-building in the Aging Network. Panel participants suggested developing training materials for caregiver program staff and disseminating them in various formats, such as electronic media, webinar, and videos that staff could reference. A few available courses were mentioned as examples. One course is a new Caregiving Certificate Program offered by the Rosalynn Carter Institute for Caregiving (RCI) through Georgia Southwestern State University, which includes course content on AT/HM.7 Many nurses have enrolled. Also, the University of Southern California offers a certificate in HM; most of the students who enroll are nurses, CMs, and social service employees. Four courses are available, with content on falls, sensory, mobility, and cognitive issues.8
Training of CMs, case workers, and other staff in how to assist caregivers with accessing technology was a major issue that arose in the TEP and CAP discussions as well as in the literature review.The TEP discussion emphasized the importance of the issue of training CMs and SWs. Participants noted that, although occupational therapists provided services in many of the interventions examined in the literature, the reality is that CMs/SWs are more often the staff who will be in direct contact with the targeted populations and identifying their AT needs. As such, direct training related to AT/HM should be implemented among this workforce to ensure that they can appropriately assist and refer caregivers. TEP members noted that this component of assessment has not been well integrated into CM/SW training.
Panel members commented that case workers need more training on body mechanics and the kinds of resources and strategies available to help reduce physical strain. For example, in some cases simply having a person sit in a different chair can reduce the need for assistance with transferring. Hence, staff training should also focus on how to help people find information and resources. CAP members suggested that more CM training might also help alleviate caregiver concerns over the cost of some AT/HM. CMs may not be properly informed about the costs of these devices, of which some come very cheaply.
Dr. Gitlin, a renowned scholar on AT/HM interventions, described workshops in Pennsylvania to heighten CMs' awareness of home safety for people with disabilities, which she said has been well received. The training was through the Pennsylvania Care Management Institute, which provides ongoing education for CMs. The program uses a home-grown assessment approach. The CMs asked three questions of families of people with disabilities, which were highly predictive of perceived quality of life, such as, "Do you have assistive devices in your home?" These questions could be included as part of a CM's risk assessment tool. A benefit of using a short set of assessment items (2-3 questions) is that assessing caregivers can take a lot of time and money. Getting that information more quickly can help avoid using limited funds on lengthy comprehensive assessments and having little left for services.
Dissemination to physicians
TEP and CAP participants also discussed the need to teach physicians about AT/HM, noting that physicians are not expected to be experts, but they need to be aware of the issue in order to make appropriate referrals. One CAP member stated that she has found medical professionals to be lacking in AT/HM knowledge. Another member supported this and said that we should target the education of PCPs in order to ensure that they are properly educated about AT/HM for caregivers.
In addition to directly educating physicians, the group discussed reaching audiences in non-traditional ways such as developing materials for the physicians' television network. Another suggestion was to disseminate a list of questions that patients could ask their physicians.
Dissemination to contractors
A suggestion was to reach consumers and give them information on how to select a contractor and what to tell them. Another suggestion was to work with training programs for contractors.