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Designing and Implementing Online Training for Staff of Family Caregivers Support Programs

Envir onmental Coping Strategies for Car egivers

amilies of persons with Alzheimers disease often need to develop new skills as they take on caregiving roles. Family caregiving may involve not only assisting with tasks of

dressing, bathing, and other activities of daily living but also managing difficult behaviors. An unsupportive home environment can add to the demands of caregiving. However, effective assistive devices and a home with appropriate design features can facilitate caregiving activities and promote engagement in activities by the person with dementia. The National Family Caregiver Support Program was created to offer support to caregivers through local Area Agencies on Aging. Project CARES (Caregiver Adaptations to Reduce Environmental Stress) sought to train staff of the National Family Caregiver Support Program about assistive devices and home modifications for caregivers. Key words: aging network, Alzheimers disease, caregivers, home modifications, online training

Alzheimers Care Quarterly 2005; 6(4):325331 2005 Lippincott Williams & Wilkins, Inc.

Environmental Coping Strateg ies for Careg iver s



Although often overlooked in the discussion of caregiver support, the home environment is a critical component significantly affecting the capacities of caregivers and service agencies to provide assistance. The home, whether of the care recipient and/or of the caregiver, functions as a service delivery site. Caregivers of persons with advancing Alzheimers disease often perform physically demanding tasks (eg, lifting and turning, helping a person use the toilet). Family caregivers need adequate space and supportive features in the home to assist with caregiving,1,2 particularly when caring for persons with Alzheimers disease.3 Research indicates that caregivers are less stressed by behaviors of the person with Alzheimers disease and better able to manage functional demands when the home environment is modified to become more supportive.4 Home modifications (HMs) (eg, grab bars, ramps, roll-in showers, and wide doorways) and assistive devices (ADs) (eg, toilet seat risers, reachers, and walkers) help reduce physical demands on caregivers.For example,grab bars can be used to support the person with Alzheimers disease while the caregiver assists with a transfer.The environment can also provide cognitive cues to direct a person who wanders to a safe pathway. For instance, night-lights can help guide a person down a hallway to a bathroom at night. Families may be unaware of effective strategies to use in the home environment to promote safety and ease their concerns. The changes to the home environment can help reduce challenges faced by family caregivers of persons with Alzheimers disease.4 Despite the benefits of HMs and ADs for supporting caregivers, several barriers prevent their use. Even though older adults prefer to live at home for as long as possible, impediments exist in getting the needed HMs.5 Services often have to be pieced together as there is no one place to go for HMs and ADs.6 Professionals who provide services to persons with Alzheimers disease and their families are interested in helping caregivers upgrade their skills and decrease the emotional and physical burden they bear. However, interventions for caregivers have not been utilized or understood often.7 One way in which caregivers can upgrade their skills is by learning about strategies for modifying the home environment to support persons with Alzheimers disease.8 HMs and ADs have been recognized recently as a way to relieve caregiver burden.4,8 However, caregivers still do not perceive the benefits that HMs can bring to their lives. In part, HMs for caregivers have largely been overlooked. HMs and ADs are not typical interventions used for



addressing caregiving tasks, and case managers and other service providers who are assisting caregivers do not often consider the home environment in their plans. Even though awareness of HMs has been increasing, the system of providing HMs is often patched together, inconsistent, and fragmented. It often involves not only the aging network but also the disabilities network agencies (eg, Centers for Independent Living,State Technology Assistance Projects). Survey research indicates that Area Agency on Aging (AAA) collaborations with Centers for Independent Living need to be strengthened to promote the use of HMs.9 Systems change activities are needed to (1) overcome fragmentation and the lack of coordination among agencies that provide HMs and ADs and (2) ensure empowerment of caregivers to carry out their tasks safely and with less stress. This article describes a project that was designed to train professionals who assist family caregivers and to help these providers recognize the role of HMs and ADs as a support to caregivers. The project, Caregiver Adaptations to Reduce Environmental Stress (CARES), was designed to respond to the need for aging network providers to assist caregivers in understanding the home environment by (1) educating service providers in the aging network and (2) stimulating improved systems of support for caregivers to increase utilization of HMs and ADs. The Older Americans Act of 1965 established services for older adults that are provided through AAAs.During the 2000 reauthorization of the Older Americans Act, the National Family Caregiver Support Program (NFCSP) was established.The NFCSP was designed to address the needs of caregivers and to acknowledge the value they contribute to society. The program is implemented through AAAs to provide services to caregivers.The aging network has a history of providing services to older adults, but addressing the needs of caregivers as a specific target group has been a new venture for most agencies. To help build an infrastructure for caregivers, the Administration on Aging funded demonstration projects under the NFCSP such as CARES. CARES included the development of online training for AAA staff to learn about strategies for assisting caregivers in acquiring and using HMs and ADs to reduce their physical burden. It also included a fieldwork change-oriented project (ie, action plans) that participants implemented in their own areas. In the past, HM services have often proven difficult terrain for individuals and service agencies alike.By educating the NFCSP service providers and providing adequate resources and technical assistance, CARES staff sought to

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promote improved HM service delivery to ease caregivers physical and emotional burden. Project CARES was a 2-year demonstration project. Phases of the project included Needs Assessment, Training, Implementation, and Evaluation.The first year focused on needs-assessment activities and the development of online training. The second year focused on training and implementation of action plans with follow-up. Two activities were conducted to identify the needs: caregiver focus groups and a national survey of AAAs. Subsequently, 2 training sessions were held for 40 AAA staff members. Participants in the training were asked to apply their new learning during the implementation phase. CARES staff administered evaluations of the training and implementation phases of the project.

A national survey was conducted to determine what HM services were available through AAAs.Before offering training to staff of the NFCSP, CARES researchers had to identify a staff person involved with each of these programs. Over 300 AAAs were contacted by phone to identify the contact for their NFCSP. From that directory, 120 participants were randomly selected to receive a national survey about caregivers and HMs. The AAAs reported that information about funding for HM was of great importance to them.They also reported different ways in which they offer funding for HMs and caregiver supports, including subcontracting services, reimbursing families, and utilizing community service groups. Piecing together funding from multiple sources was reported as both challenging and necessary.

The CARES project began with identifying the use of HMs by caregivers and the HM/AD services offered by AAAs. Four local focus groups (N 29) were conducted to determine what HMs were useful to caregivers and the challenges to obtaining these modifications. Participants were recruited from caregiver support groups of the Los Angeles Caregiver Resource Center. The majority of caregivers in the focus groups were women. Participants in one group were primarily Hispanic; another group was primarily African American. One support group was specifically for caregivers of persons with Alzheimers disease and other dementias.All of the focus groups, however, included caregivers of persons with dementia. Each focus group met once for a facilitated discussion about HMs,ADs, and caregiving. Each participant completed a questionnaire to identify individual perspectives on the topic prior to the group discussion. Common themes were identified. Focus group findings were consistent with the findings of previous studies in that caregivers had considered making additional changes, but had not made them yet.10 Some of the most problematic activities for caregivers of persons with Alzheimers disease included bathing, toileting, and using steps.The most physically demanding activities were lifting, transferring, and bathing.11 The most frequent HMs that caregivers had utilized were grab bars. In particular, caregivers noted the benefits of HMs to older adults with mobility problems. However, they had difficulty recognizing how the home environment could be modified to provide cognitive cues to persons with Alzheimers disease. Caregivers also reported that their limited use of HMs and ADs was due to the cost and difficulty in finding someone to make the modifications.

After identifying the needs of caregivers and service providers, an online course was adapted from an existing Web-based course on HMs for Los Angeles County care managers. The CARES course was based on an extensive literature review,content from the existing course on HMs, and the needs of caregivers and AAA programs derived from the CARES needs-assessment activities. The CARES course was unique in that it focused on the caregiver rather than the care recipient, and it was designed for AAA providers nationwide who were associated with the NFCSP. The purpose of the course was to build the capacity of service providers to understand the importance of HMs and ADs in helping relieve caregiver burden. A systems change approach was used to allow participants to tailor strategies to their own setting rather than impose a single approach. The 10-week course consisted of 4 online lessons with weekly exercises, a teleconference at week 5, 4 more online lessons, and a final proposal assignment due in week 10. Topics for the 8 lessons were as follows: (1) basis of HMs and ADs, (2) analysis of major activities that cause physical burden and their relationship to the environment, (3) identifying solutions to problems, (4) identifying caregivers needs related to the home environment, (5) different types of caregivers, (6) resource identification, (7) making CARES a reality in your community, and (8) developing a plan of action (POA) to increase CARES in your community. Participants needed about 3 hours to complete each weekly lesson. A Web manager was available by phone and e-mail to answer any technology-related questions. A tutorial was built into the course to help introduce participants


Environmental Coping Strateg ies for Careg iver s




to the Web-based format.The online material consisted of text, graphics, animation, and exercises. The exercises included cyber classrooms in which participants could post their responses and read each others responses to a particular question. The information was made available to the entire class; however, the participants had to visit the Web site to see the responses. Another way in which information was shared with the entire class was though a class listserv; responses went directly to everyone by e-mail. Some class assignments were more personalized and did not need to be shared with the entire class. These assignments were sent by e-mail directly to the instructor. The instructor responded to participants e-mail assignments, and participants were encouraged to respond to each other in the cyber classrooms. The online format allowed participants to complete the coursework at times that were convenient for them, but it did not allow for immediate response from the instructor or classmates. In order for participants to feel more connected to others in a similar situation, a teleconference was held midway through the course. The participants were able to interact with each other and have an immediate response from their peers and experts in HMs. In the final weeks of the training, participants were asked to apply their new knowledge by developing a POA. In the 6 months following the training, they were asked to implement their POA. Participants were recruited from the directory of staff contacts from NFCSPs. The course was offered at 2 different times to 2 groups of participants. Participants did not receive any remuneration, nor were they charged for taking the course. For the first offering, 58 people registered; the first 20 were admitted. For the second offering, 78 people registered; the first 20 were admitted. The participants were from 18 states (Alabama,Arkansas, California, Connecticut, Georgia, Iowa, Illinois, Kentucky, Louisiana, Missouri, Maine, North Carolina, New York, Oregon, South Carolina, Texas, Utah, and Wisconsin). In the first offering (Group 1), 4 participants were from North Carolina. These AAA programs planned to work together to address HMs for caregivers in their region. However, these 4 participants failed to complete the course work with the exception of one. In both the first and second offering, more than 50% of the participants completed the training. Participants from both the groups dropped out in the first 4 weeks of the course; however, no one dropped out during the last 5 weeks of either offering. Those who did not complete the first week reported some concern about the online format and also the time commitment. During the first

offering, a natural disaster hit the eastern section of the country, especially North Carolina, and many participants withdrew to help provide more pressing services in their agencies. In addition to technology concerns and natural disaster, some participants changed jobs or had other conflicting responsibilities. Lack of time was the most often reported reason for dropping out. After the first offering, participants completed a survey to evaluate the course. During the second offering of the training, some changes were made on the basis of dropout rates and the Group 1 course evaluation. During the second offering, 2 persons on the waiting list were invited to join the course late to take the place of participants who had not completed any exercises during the first week. Also, some course assignments were changed.The listserv was not used frequently, and listerv assignments were reduced for the second offering. The course evaluations for both groups were positive, with most finding the course material comprehensive and meeting their needs.The topics that were most useful according to participants were (1) identifying solutions to problems and (2) resource identification.

In the last 2 weeks of the course, each participant was asked to develop a proposal or POA as a way to apply new knowledge. Ten participants from Group 1 and 11 from Group 2 submitted a POA for review by CARES staff and outside mentors with expertise in HMs. Feedback was provided to each participant about the feasibility of his or her proposed activities. The mentors were also available for technical assistance throughout the implementation phase to assist with overcoming any barriers and to help identify any additional resource. CARES staff also developed materials for the participants to replicate and distribute, including a fact sheet and 2 brochures on HMs for caregivers. The POA consisted of identifying one activity that could be completed within 6 months and identifying partners, resources, and objectives needed to meet the goal. Primarily, the activities focused on enhancing an existing AAA service (such as providing information and assistance on HMs and ADs for caregivers) and/or building capacity (eg, establishing a community network of resources). Some of the activities proposed by participants included


a community network of HM service providers and vendors, developing in-service training to increase utilization of HMs by caregivers,

Alzheimers Care Quar terly October/December 2005

leading a caregiver support group discussion about HMs, developing a brochure or resource guide of local HM resources and service providers, and

knowledge about existing programs, improved ability to advise caregivers and access products, and changes in agency programs to respond to the lives of families.

raising awareness of HMs at a health fair.

The training prompted participants to identify local resources, such as community partners and alternative funding sources. Participants were able to identify new resources that had not been utilized previously. For example, one participant became familiar with her local Center for Independent Living. After contacting that agency, she learned that funds were available for HMs. She was able to connect 2 families to that resource and help them get the needed HMs. Since the CARES training reached only a small number of the more than 600 AAAs with NFCSPs, CARES staff developed a resource binder that was distributed to all the AAAs. The resource binder highlighted information from the 8 online lessons. It also included the CARES fact sheet and brochures. Weblinks, product brochures, and other related print materials were included.After the initial mailing, HM providers and other aging network providers made requests for additional copies of the resource binder.Approximately 700 resource binders were distributed nationwide.

The CARES project applied a national online course with a learning contract as a way to train providers and have them better utilize HMs and ADs for easing the burden of caregiving tasks. Some challenges to the CARES project were as follows: (1) many had never taken an online course; (2) the aging network typically focuses on the needs of older adults instead of the needs of caregivers; and (3) HM and AD interventions are not commonly recognized as ways to ease caregiver burden. The online format was a new way of learning for most of the participants and served as one approach to educate service providers efficiently. About half the participants who completed the course said they used the tutorial to help them understand the online format. The Web manager was contacted by about a third of the participants for technology-related problems. The tutorial and human assistance was built into the CARES project to help ease concerns about the online format. The NFCSP was a relatively new program, and some of the participants were developing initial programming for meeting caregiver needs. However, these participants seemed eager to help families access the needed HMs. Participants were not only expected to complete the training but also to apply their new learning by planning and implementing an activity. HMs were not necessarily the first and foremost intervention for supporting caregivers. Alternatively, caregiver support groups and respite care were common caregiver interventions. Participants who had established caregiver support groups were encouraged to address the issue of HMs and ADs during support group sessions. Caregiver stress, particularly when caring for a person with Alzheimers disease, can be reduced when HMs and ADs facilitate participation in safe and fulfilling activities for the care recipient, a point that was stressed during the course.

Participants evaluated the training, teleconferences, their POA progress, and the overall CARES project in which they participated. Following the online training and teleconferences for each group, a survey was conducted by e-mail, fax, or phone. Some items were scored using a Likert-type scale to rate the usefulness of the material.Other questions were open-ended, so that participants could share their own progress or experience. During the implementation phase of the POAs, participants progress was evaluated after 3 months. In addition to the survey, a teleconference was held at that time, so that participants could share their experiences. After the 6-month implementation period, a final survey was conducted. In the final evaluation, participants were asked to identify benefits to their agency and to themselves. Participants felt that their agency benefited by having new knowledge about HMs and a new approach to meeting caregiver needs. They also felt that their co-workers could turn to them as a resource. Other benefits to the agency they noted were access to experts in the field and an improved ability to connect clients to services. Some benefits for individual participants that were identified were increased



The training was designed to include strategies for success. For example, the material was designed to be relevant to the audience. Course exercises asked participants to identify the needs of their own clients and to identify resources

Environmental Coping Strateg ies for Careg iver s



in their local area. The course provided downloadable handouts that could be copied and distributed to caregivers. Many Weblinks were organized and made available to participants. A resource binder of print materials was distributed to every AAA, so that even those who were unable to participate in the online training had resources about HMs for caregivers. The online course was created to reach a wide audience and offer facilitated interaction among participants. A tutorial and human technical assistance was available for technology-related problems. Web-based discussions occurred so that participants could share ideas and questions. A real-time phone teleconference was held during the course and during the POA implementation. Each of the lessons in the course was presented in a consistent structure and across a specific timeline. This helped students know what to expect each week. A learning contract was established by having the POA proposal as a method for applying learning. Participants who were most successful in both completing the training and carrying out their POA had some common characteristics.Those with support from within their agency were more successful in completing their training and carrying out POA. For instance, while one person completed the training, a team of people helped carry out the activity. Those agencies that already had some services in place either for caregivers or in terms of HMs had a basis for expanding their services. Some participants who felt strongly about the issue made continuance plans. In other words, the activity was passed on to others to continue to carry out the plan. Participants who set achievable goals that could be completed realistically within 6 months were likely to be successful. Overall, the CARES project utilized a training program and POAs to make small steps toward change, to build the

capacity of AAA staff in serving caregivers, and to create a community of resources and providers who can offer HM services. Those who participated and completed their proposed actions were able to make changes in the way services in their agency were delivered. The participants were able to identify benefits to their clients, their agency programs, and to themselves. These NFCSPs assist caregivers of persons with Alzheimers disease, and the CARES project has provided AAAs with resources to better assist with accessing HMs.

Dory Sabata, OTD, OTR/L, is an occupational therapist and research scientist at Georgia Institute of Technology, Atlanta. Phoebe Liebig, PhD, is associate professor of gerontology
and public administration at the Andrus Gerontology Center, University of Southern California, Los Angeles.

Jon Pynoos, PhD, is UPS Foundation Professor of Gerontology, Policy, Planning and Development Director, Division of Policy and Services Research at the Andrus Gerontology Center, University of Southern California, Los Angeles.

CARES is supported by a grant, No. 90CG2628, from the Administration on Aging, Department of Health and Human Services. Grantees undertaking projects under the government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration on Aging policy. Address correspondence to: Dory Sabata, OTD, OTR/L at Georgia Tech, Center for AT and Environmental Access, 490 10th St, Atlanta, GA 30318. E-mail:

REFERENCES 1. Newman SJ, Struyk R,Wright P, Rice M. Overwhelming odds: caregiving and the risk of institutionalization. J Gerontol Soc Sci. 1990;45:S173S183. 2. Pynoos J, Sanford J. Home modifications. In: Maddox G, ed. Encyclopedia of Aging. 3rd ed. New York: Springer; 2001. 3. Pynoos J, Cohen E, Lucas C. The Caring Home Booklet: Environmental Coping Strategies for Alzheimers Caregivers. Los Angeles: Long Term Care National Resource Center at UCLA/USC; 1988. 4. Gitlin LN, Corcoran M,Winter L, Boyce A, Hauck WW.A randomized, controlled trial of a home environmental intervention: effect of efficacy and upset in caregivers and on daily function of person with dementia. Gerontologist. 2001;41:414. 5. Bayer A, Harper L. Fixing to Stay:A National Survey on Housing and Home Modification Issues.Washington, DC:American Association of Retired Persons; 2000. 6. Liebig PS, Sheets DJ. State assistive technology policies and programs for older adults with disabilities: trends and innovations. Technol Disabil. 1999;10:1321. 7. Montgomery RJV, Kosloski KD. Change, Continuity and Diversity Among Caregivers. Washington, DC: Administration on Aging; 2000.


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8. Toth-Cohen S, Gitlin LG, Corcoran MA, Eckhardt S, Johns P, Lipsitt R. Providing services to family caregivers at home: challenges and recommendations for health and human services professions. Alzheimers Care Q. 2001;2:2332. 9. Liebig PS.A tale of two networks: a bumpy road ahead for home modification services. Paper presented at: the Annual Joint Conference of the American Society on Aging and National Council on Aging;2004;San Francisco.

10. Sabata D, Overton J. Caregiver adaptations to reduce environmental stress: the role of home modifications and assistive devices. Paper presented at: the International Conference on Aging, Disability, and Independence; 2003;Washington, DC. 11. Sabata D, Overton J.The role of environmental coping strategies. Poster session presented at: the Administration on Aging National Summit on Creating Healthy and Caring Communities; 2003; Orlando, Fla.


Environmental Coping Strateg ies for Careg iver s