• Learn the challenges faced by rural family caregivers in obtaining educational and support services for Alzheimer patients and those with closely related problems.



• Learn the rationale for cognitive-behavioral (CB) intervention for caregivers of individuals with progressive dementia in light of recent findings of telehealth-based CB outcome studies with this population.



• Learn how telehealth-based CB classes and other services are provided in rural settings.



• Learn the six major factors in caregiver use of telehealth services.

This paper was partially supported by a grant from the Florida Alzheimer’s Center & Research Institute to the author. I would like to acknowledge the helpful editorial assistance of Ivan Ludmer in preparing this article. Please send all e-mail correspondence regarding this paper to: robert.glueckauf@med.fsu.edu.

ABSTRACT

Rural family caregivers of older adults with Alzheimer’s disease and closely related conditions confront a variety of emotional and psychosocial difficulties in providing care for their loved ones. They are likely to experience considerable frustration in obtaining adequate attendant care and respite services, gaining access to cognitive-behavioral programs that enhance stress management and problem-solving skills, and receiving guidance in managing their finances. Although professional and governmental organizations have called for the creation of rural, community-based education and support programs, most rural dementia caregivers continue to receive little or no formal assistance in responding effectively to these challenges. The current paper provides an overview of the challenges faced by rural family caregivers in obtaining educational and support services, including lack of resources and the stigma they confront in seeking psychological assistance. Second, the rationale for cognitive-behavioral (CB) intervention for caregivers of individuals with progressive dementia is provided, followed by a discussion of recent findings of telehealth-based CB outcome studies with this population. Finally, a new grant initiative is described that delivers telehealth-based CB classes and other services in rural settings.

OVERVIEW OF DEMENTIA AND DEMENTIA CAREGIVING

Recent epidemiological studies have estimated that there are currently 5 million older adults with Alzheimer’s disease and closely related conditions (e.g., Multi-infarct dementia, Pick’s disease, and Parkinson’s disease) in the United States (Alzheimer’s Association/NAC, 1999). Symptoms of Alzheimer’s disease include progressive memory loss, decline in ability to perform daily routine activities, and disorientation related to time, place, and person. Individuals with Alzheimer’s disease live an average of 8 years following diagnosis, and as many as 20 years or more from the onset of symptoms (Cooley et al., 1996).

Nowhere in the country has the impact of Alzheimer’s disease been felt more strongly than in the State of Florida. More than 410,000 Floridian older adults have some form of progressive dementia, representing 13.7% of the state’s population over 65 years of age. This prevalence rate places Florida where the remainder of the nation will be in 20 years, and has led state government leaders to conclude that Alzheimer’s disease is “Florida’s epidemic” (Florida Alzheimer’s, 2002). The vast majority of adults (75%) with progressive dementia are cared for in the home by family members, most of whom are older spouses, middle-aged daughters, and daughters-in-law (Schulz & O’Brien, 1994).

These family caregivers are confronted with a wide variety of challenges in providing assistance to their loved ones. Caregiving requirements typically include monitoring hygiene and self-care activities, issuing frequent reminders, and dealing with agitation, aggressive behavior, and wandering. Unfortunately, such intensive home care activities are performed at high cost to family care-givers in terms of psychological, physical, and financial resources. Several studies have shown that caregivers of persons with dementia experience a significant decline in mental and physical health, social activities, as well as disrupted household routines and relationships. They are at substantial risk for the development of emotional disorders, particularly depression and anxiety (e.g., Gallagher-Thompson et al., 2000; Schulz, Visintainer, & Williamson, 1990).

Although government and consumer organizations have called for the development of education and support programs to address these difficulties, there continues to be a substantial gap between caregiver needs and available services (Schulz & Quittner, 1998). This shortcoming is especially problematic for rural families. Resources for this population are limited at best and non-existent in certain areas. In order to obtain needed medical care and neurobehavioral consultation, rural caregivers are frequently required to travel long distances to health science centers located in major metropolitan areas. They are often unable to take advantage of these essential services because of the high cost of travel and attendant loss of wages. Furthermore, they may experience high levels of social stigma associated with the inappropriate or aggressive responding of their loved one with dementia. Such behavior may be viewed as a sign of mental illness or alcohol abuse rather than as symptoms of an underlying neurodegenerative disease.

THE DILEMMAS OF DEMENTIA CAREGIVING IN RURAL AREAS

The challenges faced by rural caregivers in providing assistance for older family members with Alzheimer’s disease are illustrated in a case example. Although names and locations have been altered to maintain confidentiality, the dilemma was actually a real one that appeared on an Alzheimer’s caregiver message board.

SUSAN AND MIKE’S STORY

Susan was a 70 year old wife and primary caregiver of her 80 year old husband, Mike, who was in the middle stage of Alzheimer’s disease. The couple lived in a small town west of Tallahassee, Florida, with a population of 2,000 people. Susan reported that over the past month, Mike had become increasingly belligerent and agitated. She attributed his recent rise of aggressive behavior and frustration to her children’s decision to hire a part-time attendant. Most recently, Mike had struck out at his well meaning attendant when she offered to take him for a walk to the park. He vehemently rejected the attendant’s offer, yelling at the top of his lungs that he “didn’t need anyone else’s help,” and “would fight for his hard earned independence.” Susan intervened quickly before the attendant was physically harmed and, in the process of this dispute, was accidentally hit in the stomach by her husband. The next day Susan met with her local family physician, desperately seeking a solution to her problem. She confided in Dr. Smith that she felt “that the weight of the world was on her shoulders and just felt like giving up.” She was worried that, if her husband’s behavior didn’t improve, she might “fall into a depression.” Dr. Smith recommended that she make an appointment with a consulting psychiatrist, Dr. Green, from a major hospital in Tallahassee, who worked part time at the local health department. She was familiar with Dr. Green because two women from church worked at the health department and frequently talked about “the kinds of people the mental doctor saw.”

Although Susan realized that she needed help, speaking to outsiders, especially a psychiatrist, about personal and family problems felt unnatural. Like many other women in her small rural town, she always had considered herself “an independent, strong, and self-reliant person.” She had managed Mike’s plumbing business for years, canned her own vegetables, raised two kids, and served on the town’s leadership council. Although Susan trusted her family physician’s judgment, she worried that her friends would find out that she “was under the care of the university psychiatrist.” She also considered traveling to Dr. Green’s office in Tallahassee, but was concerned that her old Ford truck could not take the wear and tear of a 200 mile roundtrip. Susan felt that she was between the proverbial “rock and a hard place.” On the one hand, she knew that her emotional health was deteriorating and that she desperately needed sound advice about how to manage Mike’s behavior. On the other, she dreaded the possibility of seeing her two church acquaintances at the health department and that they might broadcast her problems at church and to her friends in the community. Transportation to Dr. Green’s private office in Tallahassee also brought its own set of uncertainties. Susan couldn’t bear the thought of needing to deal with a breakdown of her truck on the side of the road, nor the possibility of having to pay for repairs on the old Ford.

Unfortunately, the Story of Susan and Mike is a much too common scenario for rural caregivers of older adults with progressive dementia. Previous research has shown that rural individuals tend to rely on local health care providers and informal support for information about and referral to health care and social services. They are typically reluctant to enter into relationships with non-rural providers even when they are recommended by their trusted family physician, pastor, or nurse practitioner (Farrell & McKinnon, 2003). Furthermore, rural dementia caregivers have reported feeling misunderstood and unappreciated by urban health care providers and senior service organizations. As a result, they distance themselves from the very information and services they need to enhance their coping skills, health, and emotional well being (Glueckauf et al., 2003). They also may not have sufficient resources to manage the high cost of travel to hospital clinics in large cities.

THE PROMISE OF RECENT ADVANCES

Two recent developments have enhanced our prospects for meeting the education and support needs of rural family caregivers of older adults with progressive dementia. The first development is the mounting empirical support for the efficacy of evidence-based cognitive-behavioral interventions for caregivers of older adults with dementia. These intervention approaches have shown considerable promise in ameliorating psychological distress and enhancing problem-solving skills in dementia caregivers (Bourgeois, Schulz, & Burgio, 1996; Burgio, Solano, Fisher, Stevens, & Gallagher-Thompson, 2003; Gallagher-Thompson et al., 2000). A second development is the use of telecommunication technologies as a vehicle for improving emotional and psychosocial functioning of individuals with chronic illnesses and their family caregivers. Several recent studies have shown that tele-health interventions, particularly those that are telephone- or Web-based, lead to significantly greater gains in psychological and health outcomes than routine support for caregivers of persons with Alzheimer’s disease (e.g., Eisdorfer et al., 2003; Mahoney, Tarlow, & Jones, 2003).

COGNITIVE-BEHAVIORAL INTERVENTIONS FOR DEMENTIA CAREGIVERS

The primary objectives of cognitive-behavioral intervention for dementia caregivers are to reduce psychological distress, encourage positive lifestyle modifications, and enhance problem-solving skills in managing the demands of daily care activities. These approaches consist of a variety of therapeutic strategies, including effective thinking about challenging caregiving situations, relaxation training, building in pleasant daily activities as a prophylactic against caregiver burnout, increasing assertive communication with family members and health care professionals, enhancing problem-solving skills, and implementing individualized caregiving goals (Burgio et al., 2003). Most cognitive-behavioral interventions for dementia caregivers are delivered in a group format and require participants to travel from their homes to the program location, typically a hospital or health science center located in a major metropolitan area. The intervention typically consists of 12 to 16 sessions, each of which is 1 to 1.5 hours in duration.

Dolores Gallagher-Thompson and her associates have conducted the majority of studies on the effects of cognitive-behavioral interventions on caregiver emotional distress. These studies have incorporated a variety of cognitive-behavioral approaches, such as life satisfaction classes, problem-solving skills training, and coping with frustration classes. In an early study, Lovett and Gallagher (1988) assessed the differential effects of life satisfaction classes, problem-solving skills training, and no treatment control on the emotional functioning of family caregivers. Both cognitive-behavioral interventions showed significant improvement on measures of depression and morale as compared to controls who showed little change over time. In a replication of this study (Gallagher-Thompson et al., 2000), only the life satisfaction group led to significant reductions in rates of diagnosed depression as compared to waiting list controls from pre- to posttreatment. In their recent National Collaborative Resources for Enhancing Alzheimer’s Caregiver Health (REACH) intervention, Gallagher et al. (2003) found that Mexican-American and White dementia caregivers in the cognitive-behavioral “Coping with Caregiving” group reported a significant reduction in depressive symptoms and increased use of adaptive coping strategies, whereas those who participated in traditional support groups showed little or no change over time. The results were equivalent across both ethnic groups.

In summary, the overall findings of Gallagher and colleagues’ program of research suggest that cognitivebehavioral intervention may be an effective method for reducing caregiver psychological distress. Furthermore, this pattern of results was similar to that obtained in other cognitive-behavioral outcome studies with family caregivers (e.g., Pinkston, Linsk, & Young, 1988; Zarit, Anthony, & Boutselis, 1987).

Note, however, that despite the promise of this treatment approach in improving emotional functioning, it is currently unavailable to a large proportion of dementia caregivers. Translation of cognitive-behavioral intervention to the community has been thwarted by both logistical and geographical barriers. These interventions typically have been performed at health science centers in major metropolitan areas for small numbers of urban-residing participants. Only those caregivers who can afford or who are willing to obtain respite services have been able to participate in these programs (Czaja, Eisdorfer, & Schultz, 2000). Furthermore, many dementia caregivers find it difficult to attend any form of group intervention because of the difficulties in arranging for attendant care and the cost of transportation (Glueckauf et al., 2003), as well as their reluctance to focus on their own emotional needs. This is especially the case for rural caregivers, as depicted above in Susan and Mike’s story.

TELEHEALTH TECHNOLOGIES AND CAREGIVER INTERVENTION

One of the most exciting innovations in health care is the growing use of telehealth technologies to provide information and treatment services to individuals with chronic illnesses and their family caregivers. Although the evaluation of telehealth and other alternative health care delivery methods is in the early stages of development, there are now several well-designed randomized controlled studies that can provide guidance in determining how and under what conditions telehealth leads to positive mental health outcomes. There is growing evidence that telehealth interventions, particularly those that are telephone- and Internet-based, may show significantly greater mental health benefits than routine medical care for family caregivers and their loved ones with chronic disabilities (Liss, Glueckauf, & Ecklund-Johnson, 2002).

In a representative telephone-based intervention, Steffen (2000) randomly assigned 33 urban-residing dementia caregivers to 1 of 3 conditions: (a) home-based videotaped “Coping with Frustration” classes plus telephone follow-up (n = 12), (b) traditional face-to-face “Coping with Frustration” classes (n = 9), or (c) a waiting list group (n = 12). Participants in both the home-based videotaped plus telephone and face-to-face classes reported significant improvement in depressive affect, hostility, and confidence in their ability to handle caregiving challenges from pre- to posttreatment, whereas the waiting list controls showed no change over time. Furthermore, equivalent gains were obtained across both active treatment conditions. Note that similar findings have been reported by REACH investigators, Eisdorfer et al. (2003) and Mahoney et al. (2003) in their telephone-based interventions with large urban caregiver samples. They found that telephone-based cognitive-behavioral interventions emphasizing enhancement and rehearsal of problem-solving and family coping skills showed substantial reductions in caregiver symptoms of depression and concomitant improvements in perceived mastery and life satisfaction, as compared to minimal education and support controls who showed little or no change over time.

In the only study assessing the effects of an integrative Internet- and telephone-based cognitive-behavioral intervention for dementia caregivers, Glueckauf et al. (in press) found initial support for the efficacy of their online “Positive Caregiving” program. Twenty-one family caregivers completed either Internet (n = 15) or toll-free telephone-based (n = 6) cognitive behavioral classes focusing on relaxation, stress management, and lifestyle enhancement over a three-month period. Twenty participants resided in Florida and one in Maryland. Similar to Steffen (2000), Eisdorfer et al. (2003), and Mahoney et al. (2003), the overwhelming majority of dementia caregivers (98%) who elected to participate in the study were from major metropolitan areas. No significant differences were found between the Internet and telephone groups on any of the background characteristics or on the pre-test scores of the dependent measures.

Glueckauf et al. found mixed support for the effectiveness of their cognitive-behavioral caregiving classes. On the positive side, participants reported substantial improvements in their perceptions of self-efficacy in performing routine caregiving duties and managing challenging care recipient behaviors, as well as their appraisals of the emotional caregiver burden from pretesting to the one-week post-intervention phase. In contrast, they reported only minimal changes on the positive dimensions of the caregiving experience (i.e., stress related growth and positive caregiving appraisals), and on their perceptions of time burden in providing caregiving assistance.

In explaining the pattern of results, Glueckauf et al. (in press) hypothesized that the content of their Positive Caregiving series was focused primarily on increasing relaxation skills, managing anxiety-provoking caregiving situations, and enhancing perceptions of caregiver mastery and self-efficacy. Less emphasis was placed on the rewards of caregiving, the emotional benefits of the care-giving experience, or on spiritual fulfillment. Thus, it was not surprising that measures assessing those positive dimensions of the caregiving role [e.g., Parke, Cohen & Murch’s (1994) Stress-related Growth scale] showed little or no change from the pre- to post-treatment.

In summary, recent studies have provided preliminary evidence supporting the efficacy of telephone and Internetbased cognitive-behavioral interventions for family caregivers. Although the findings of these telehealth outcome studies have been promising, there is a need for largescale, multi-site trials to assess the differential effects of specific telehealth modalities (e.g., telephone and Web) across different caregiver populations on technology comfort and in turn, mental health outcomes. For example, middle-aged daughters who routinely interact with computer technology may report substantially higher technology comfort and perceived effectiveness in using the Web to access cognitive-behavioral caregiving classes than in using a standard home telephone. In contrast, older spouses, who have limited exposure to computers and the Internet, may report higher levels of comfort and perceived effectiveness in relying on the telephone than in using a computer-based application.

In addition to testing the interaction between types of technology and caregiver characteristics, there is currently a dire need for research on the outcomes of telehealth interventions in rural environments. Furthermore, there have been no controlled studies that have assessed the impact of telehealth-based cognitive-behavioral programs on the mental and physical health of rural dementia caregivers. We continue to lack basic information about how best to engage rural providers and community leaders in recognizing the importance and actively promoting the use of telehealth networks.

ALZHEIMER’S CAREGIVER COMMUNITY EDUCATION & SUPPORT: SERVING RURAL CAREGIVERS THROUGHOUT FLORIDA

In an effort to address these shortcomings, Glueckauf and his colleagues recently have initiated a series of studies examining the impact of telehealth-based education and support for rural dementia caregivers and their health care providers. The remainder of the paper will focus on this seminal work. I will begin with an outline of the objectives and conceptual framework of the rural telehealth research program, followed by a description of study procedures and data analyses.

OBJECTIVES

The primary objectives of this three-year grant-funded research initiative (Glueckauf, 2004) are to:

1. Test the conceptual framework for predicting caregiver use of a telehealth-based Alzheimer’s Caregiver Community Education and Support System (ACCESS);
   
2. Assess the effects of an outreach education program on rural providers’ knowledge and skill in managing the health concerns of dementia patients and their caregivers, and on the volume of referrals of dementia caregivers to the ACCESS project’s telephone-based cognitive-behavioral caregiving classes, and
   
3. Evaluate the differential effects of telephone-based cognitive-behavioral caregiving classes vs. a routine education control condition on rural caregivers’ psychological distress, perceived self-efficacy, and role strain from pre- to posttreatment.
   

CONCEPTUAL FRAMEWORK

First, the conceptual framework of the research project emphasizes the contextual nature of decision making in the use of tele-health services, defining this process as a dynamic interaction between the rural caregiver, health care provider and the social environment. As shown in Figure 1, the model proposes six major factors of caregiver use of telehealth services: (1) dementia caregiver mental and physical health, (2) care recipient problem behaviors, (3) caregiver characteristics (e.g., ethnicity), (4) caregiver technology skill and comfort, (5) significant others’ support of the use of technology in health care, and (6) dementia caregiver level of enrollment and participation in telephone-based cognitive behavioral classes.

The first factor focuses on caregiver mental and physical health. Decline in caregiver health has been found to correlate negatively with perceived self-efficacy and mastery in managing the daily stresses of dementia caregiving (Steffen et al., 2002) and to be positively associated with perceived role burden (Vitaliano, Young, Teri, & Maiuro, 1991). Dementia caregivers who experience high levels of psychological distress and decline of physical health may be more likely to seek professional assistance than those with lower levels of distress and, in turn, may be more highly motivated to use telehealth-based services when they are offered by their provider.

The second factor in the conceptual model is the severity of care recipient (i.e., dementia patient) problem behaviors. Previous research (e.g., Haley, Levine, Brown & Bartolucci, 1987; Schulz, O’Brien, Bookwala, & Fleissner, 1995) has shown that the primary stressors for dementia caregivers are care recipient problem behaviors, such as angry outbursts, agitation, and socially inappropriate responding. Care provision represents the second type of caregiving stressor and refers to the demands of providing assistance in self-care activities, such as bathing, feeding, and toileting. However, several studies have shown that perceived care recipient problem behaviors are a greater emotional burden than care provision (Goode, Haley, Roth & Ford, 1998; Schulz et al.,1995).

Turning to the role of ethnicity, dementia caregiver intervention researchers (e.g., Gallagher-Thompson et al., 2003) have found that minority caregivers may be less likely to seek the assistance of traditional health care providers (e.g., rural family physicians) than their White counterparts. The former are more likely to rely on respected community leaders and non-physician providers (e.g., church elders and local nursing personnel) for advice and assistance in managing health care problems. Thus, referral of minority caregivers to telehealth-based services may be initiated more often by non-physician care providers than rural primary care physicians. In addition, previous research has suggested that ethnicity may influence the extent of caregiver psychological distress. For example, Haley et al. (1996) found that African-American dementia caregivers reported lower levels of perceived stress than White caregivers, and this appraisal was subsequently related to lower levels of depression. Haley et al. and other investigators have proposed that ethnic differences in perceptions of strain and burden may be due to differing cultural beliefs and values (e.g., tolerance of cognitive decline) or divergent life experiences.

Fourth, comfort with and skill in using technology may significantly influence caregiver utilization of telehealth services. Family caregivers may vary in their level of comfort with and skill in using telephone or other alternative delivery methods in accessing health care services. Glueckauf et al. (2002) found that technology comfort varied among rural family members. Rural teenagers with epilepsy showed significantly higher comfort with telephone than desktop videoconferencing for family problem-solving counseling, whereas parents showed equivalent and high levels of comfort across both modalities. Although no studies to date have examined the impact of varying levels of comfort and skill on level of use of telehealth services, it is likely that dementia caregivers who are high on these dimensions are most likely to enroll and show greater levels of participation than those who are low on these dimensions.

Shifting to provider support, rural care providers may exert a substantial influence on caregivers’ decision to participate in telehealth services. Community opinion leaders’ (e.g., pastors, case managers, and nurses) attitudes about technology-based interventions may play a critical role in determining the acceptance of and use of these applications by rural family caregivers. Previous telehealth research has shown that providers, particularly mental health professionals, place considerable importance on direct social presence with the patient in determining the effectiveness and utility of intervention (Glueckauf, Pickett, et al., 2003). Many clinicians believe that nonverbal cues are essential to the diagnostic or treatment process, providing a window into their patient’s mental and physical functioning. In contrast, when faced with the choice of telehealth- based intervention versus no specialty care whatsoever, providers’ opinions may shift in the direction of endorsing telehealth applications. The potential time and cost savings of teleconferencing may outweigh the drawbacks of the somewhat artificial nature of teleconferencing and the possibility of periodic transmission difficulties (Glueckauf, Pickett et al., 2003).

Finally, caregiver use of telehealth services is the primary outcome variable in the conceptual framework. This includes both the caregivers’ decision to enroll in telehealth-based intervention and the extent of their participation in the program (i.e., cognitive-behavioral caregiving classes).

The conceptual model’s validity will be tested using structural equation modeling procedures. We plan to examine the relationships among demographic and health status variables, proposed mediators (i.e., caregiver technology comfort and skill and provider support of technology) and caregiver use of telehealth services.

LOCATIONS FOR THE ACCESS PROJECT

The study will be conducted in rural counties across the state of Florida. The first year of the study will be performed in 11 rural counties in the Florida Panhandle region. Year 2 will target 15 rural counties in Northeast Florida, and Year 3 will focus on 8 counties in Central Florida.

RESEARCH DESIGN

The research design of the ACCESS project includes both qualitative and quantitative methodologies. In all three years of the study, the same general protocol will be used. Provider and caregiver focus groups will be administered first, followed by rural care provider workshops. Finally, dementia caregiver telephone-based cognitive behavioral classes will be implemented. The specific methodologies and their key objectives are described below:

FOCUS GROUPS

First, focus groups will be conducted to identify both dementia care management needs and cultural preferences for specific types of educational materials across provider groups (i.e., elder care case managers, nurse practitioners, primary care physicians, pharmacists, and clergy) and 3 groups of rural dementia caregivers (non- Hispanic White, African-American, and Hispanic-Latinos). We also plan to assess rural care providers’ perceptions of the degree to which telehealth may enhance or hamper their own health care practices. Each focus group discussion will be tape recorded and transcribed for content analysis. Priorities for educational content and specific locations for provider workshops, suggestions for the content and format of caregiver interventions, as well as cultural preferences for specific types of content and style of delivery will be analyzed using a Q-sort procedure. In addition to qualitative analysis, caregiver participants will be asked to fill out Likert-format rating scales, indicating the extent to which key components of cognitive-behavioral intervention (e.g., relaxation training, controlling upsetting thoughts, problem-solving skills) are important and useful to them, as well as their comfort, ease of use, and perceived utility of face-to-face and telephone-based intervention. Rural provider participants will be asked to complete Likert-format rating scales, reporting the degree to which key topics (e.g., pharmacological management of agitation and depression, screening for memory disorders, treatment of sleep difficulties, management of caregiver depression) are important and useful in counseling dementia caregivers. Note that the findings of focus group discussions will be used to modify the author’s previously developed educational materials and specific protocols for provider workshops and caregiver cognitive-behavior interventions (see Glueckauf et al., 2003 for a description of early caregiver intervention contents and protocols).

PROVIDER WORKSHOPS

Next, care provider workshops will be conducted at rural hospitals, churches, and discipline-specific conferences. The primary objectives of the provider workshops are to provide dementia care education tailored to the daily practice needs of frontline rural providers and to solicit their involvement in referring dementia caregivers who may benefit from cognitive-behavioral inter-vention. Based on the author’s previous studies (Glueckauf et al., 2003; Glueckauf et al., in press), unless there is “buy in” from providers at the grassroots level, only a limited number of rural dementia caregivers are likely to take advantage of toll-free telephone- and Web-based education services. One of the best methods for developing rural provider “champions” is to: (1) offer them a service from which they are likely to benefit (i.e., educational workshops), (2) provide intervention programs to family caregivers of Alzheimer’s patients/congregation members, and (3) assure them that caregivers will be encouraged to rely primarily on local resources (Stamm, 2003). In addition to providing workshops in rural locations and discipline-specific conferences, providers will be encouraged to use ACCESS’ website services, including online educational modules, useful links, referral sources, chat relay, email with dementia care specialists, and a bulletin board.

Quasi-experimental procedures will be performed to evaluate the impact of a rural provider education program versus standard program advertisement on the volume and rate of dementia caregiver referrals to ACCESS’ intervention groups. The end points for this quasi-experimental study are caregiver referral volume and referral rates (i.e., number of caregiver referrals per month) for ACCESS’ cognitive- behavioral intervention. These two dependent measures will be weighted by the estimated number of dementia caregivers in both the counties of the active treatment region and the counties included in the standard advertisement control region. Separate one-between factor ANOVAs will be used to detect weighted mean differences in caregiver referral volume and referral rates between the 11 rural counties of the Florida Panhandle and the 15 Northeast Florida regions at the end of Year 1, and between the 15 counties in the Northeast Florida region and the 8 rural counties in the Central Florida region at the end of Year 2.

ACCESS’S RANDOMIZED TRIAL OF TELEPHONEBASED VERSUS STANDARD EDUCATION AND SUPPORT.

Following screening and baseline assessment, dementia caregivers will be randomly assigned to telephone-based cognitive behavior (CB) intervention or a standard education (SE) control condition. Caregiver participants will be enrolled from the 9th month and through the 12th month of each project year in the following order: Year 1 (Panhandle), Year 2 (Northeast FL), and Year 3 (Central FL). Based on estimates from the author’s previous Alzheimer’s Caregiver Support Online research (Glueckauf et al., 2003), 180 rural caregivers are expected to enroll in the CB and SE conditions.

TELEPHONE-BASED COGNITIVE BEHAVIORAL INTERVENTION.

CB consists of a total of 10 biweekly sessions, 6 telephonebased group and 4 telephone-based, individual caregiver goal setting and implementation sessions. The homebased, online cognitive-behavioral intervention program consists of 6 major components: (a) overview of dementia and relaxation training, (b) effective thinking about the challenges of caregiving, (c) building in pleasant daily activities as a prophylactic against emotional distress, (d) assertive communication in caregiving situations and with family members, (e) developing problem-solving skills through personal goal setting, and (f) the importance of having a social support network and of continuing to maintain and refine their skill base. The schedule of telephone-based classes is as follows: (1) During weeks 1-10, each caregiver will meet online in groups of 3 to 6 participants for 45- minute weekly classes; (2) From week 11 to 18, each caregiver will receive four 1-hour, individual telephone sessions focusing on goal setting and successful goal implementation. Each rural caregiver will be encouraged to identify and put into effect two personal caregiving goals (Glueckauf & Loomis, 2003); (3) During weeks 19-20, caregivers will receive their last group class (i.e., Techniques for Maintaining Gains). Posttesting will occur one week following conclusion of classes.SE participants will receive brief 10-minute telephone calls at their home on a biweekly basis, consisting primarily active listening and empathy, for a total of 20 weeks. Generic educational materials also will be mailed to SE caregivers, including information about Alzheimer’s disease, and caregiving resources.

The primary dependent measures will include the Center for Epidemiological Studies-Depression scale (CES-D; Radloff, 1977), the 19-item Caregiver Appraisal Inventory (CAI; Lawton et al., 1989), the 30-item Caregiver Self-Efficacy Scale (CSES; Steffen et al., 2002), and caregiver problem severity, frequency, and problem change scales (Glueckauf, 2000). In addition, a telephone-adapted version of the Audiovisual Equipment Rating Scale (Hufford, Glueckauf, & Webb, 1999), a 13-item Likert-format rating scale questionnaire, will be used to assess satisfaction with telecommunication- mediated therapeutic interactions.

Longitudinal growth modeling (LGM) procedures will be used to evaluate the effects of CB versus SE on changes in caregivers’ self-reported depression, caregiver burden, and identified problem severity and frequency, as well as increase their self-efficacy in health-promoting activities and in managing disruptive care recipient behaviors from pretreatment to one week after the final treatment session.

TELEPHONE-BASED COGNITIVE BEHAVIORAL CLASSES: SCHEDULE AND TOPIC AREAS

Weeks 1-2 Telephone Discussion Group: Overview of Dementia and Relaxation Training
Weeks 3-4 Telephone Discussion Group: ABCs of Positive Caregiver Thinking
Weeks 5-6 Telephone Discussion Group: Increasing Caregiver Emotional Well Being
Weeks 7-8 Telephone Discussion Group: Assertiveness in Caregiving Situations
Weeks 9-10 Telephone Discussion Group: Managing Challenging Caregiving Situations
Weeks 11-12 Telephone Individual Session: Setting Personal Caregiving Goals
Weeks 13-14 Telephone Individual Session: Implementing Personal Caregiving Goals I
Weeks 15-16 Telephone Individual Session: Implementing Personal Caregiving Goals II
Weeks 17-18 Telephone Individual Session: Feedback on Personal Goal Progress
Weeks 19-20 Telephone Discussion Group: Techniques for Maintaining Gains

SUMMARY AND CONCLUDING REMARKS.

There is growing support for the efficacy of telehealth interventions that employ cognitive-behavioral interventions for dementia caregivers. One of the most glaring limitations of this emerging research area is the failure to evaluate the impact of telehealth on underserved rural caregiver constituencies. There are no controlled studies that have assessed the impact of telecommunication-mediated interventions on the emotional and psychosocial functioning of rural dementia caregivers. Despite federal and state government recognition of the dire needs of this population, rural dementia patients and their family caregivers continue to be one of the most neglected constituencies in the U.S. in terms of access to health education and support services. The primary purpose of the ACCESS project is to develop and evaluate culturally appropriate interventions that will address the unmet educational and support needs of Florida’s rural dementia caregivers and their rural primary care providers. If the project is successful, ACCESS has the potential of serving as a prototype for other states to follow. We cannot permit caregiving dilemmas, such as the one presented by Susan and Mike, to continue in the future.

AUTHOR

Robert L. Glueckauf, Ph.D., Dept. of Medical Humanities & Social Sciences, Florida State University College of Medicine

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