Abstract
Dementia is a generic term used to describe a group of chronic, progressive, degenerative cognitive disorders that lead to a loss of independent functioning, resulting in a wide-ranging impact on individuals, families, and health care systems (National Institutes of Health, 2012). Although about 100 different types of dementia exist, Alzheimer’s disease (AD) accounts for more than 60% of all dementias in the population age 65 and older (Nikzad-Terhune, 2011; Venes, 2005). Estimates have suggested that dementia affects 3.4 million people in the United States, which encompasses about 14% of those >71 yr old (Plassman et al., 2007). The projected increase in the older adult population (>65 yr) from 35 million to 82 million between 2000 and 2050, coupled with evidence that the incidence of dementia steadily increases with age, makes it a major public health concern.
A person with AD may live as long as 20 yr from diagnosis, although the mean survival rate is 4–8 yr (Brookmeyer, Corrada, Curriero, & Kawas, 2002; Helzner et al., 2008; Larson et al., 2004). Given the progressive nature of this disease, caregiving for people with dementia is complex and dynamic and typically requires a significant expenditure of physical, psychological, and material resources (Schulz & Martire, 2004). Family members provide 80% of care for people with dementia, which, according to the Alzheimer’s Association (2012), is valued at more than $210 billion per year. More than 65 million people in the United States spend an average of 20 hr/wk caring for someone with a disability, chronic illness, or aging-related decline. About 43.5 million caregivers provide unpaid care for adult family members or friends ≥50 yr old. Caregivers are predominantly female (66%), with an average age of 48 (Family Caregiver Alliance, 2012). Roughly 94% of caregivers care for a relative (62% for a parent or parent-in-law, 17% for a grandparent, 6% for a spouse, and 9% for another relative) and 6% care for a friend (National Alliance for Caregiving, 2009).
We use the term family caregivers to refer to informal, nonpaid caregivers who are usually members of the immediate family but can also include relatives, friends, and acquaintances. Family caregivers assist with a wide range of activities of daily living (ADLs). According to the Occupational Therapy Practice Framework: Domain and Process (American Occupational Therapy Association, 2008), ADLs are classified as either basic activities of daily living (BADLs), such as bathing, grooming, dressing, transfers, and eating, or instrumental activities of daily living, which include communication, meal preparation, home safety, community mobility, and financial management.
The annual economic value of the care provided by family caregivers, if they were reimbursed for all their voluntary services, was estimated in 2006 to be $350 billion (Houser & Gibson, 2008). In comparison, the national Medicare expenditure in the same year was only $374 million (Henry J. Kaiser Family Foundation, 2007). This discrepancy highlights the ramifications if this voluntary workforce of caregivers did not exist (Perkins, 2011). Caregiving is clearly a public health issue of national significance, and one that will gain prominence as baby boomers age.
Caregiver Challenges
Caring for a person with dementia can be especially demanding, largely because few familial caregivers receive training in the skills needed to provide care (Kuhn, 2001; Parks & Novielli, 2000). This difficulty is compounded by the fact that as dementia progresses, caregivers must assume additional responsibilities to properly care for and sustain the person with dementia in his or her home (Kuhn, 2001). With little to no training, caregivers typically experience adverse physical, psychological, social, and financial hardships for which they are generally unprepared (Shah & Wadoo, 1994). Without adequate supports, caregivers are at high risk for physical injuries, caregiver stress, and burnout (Gerdner, Hall, & Buckwalter, 1996; Schulz & Martire, 2004).
Participation in support groups, as well as educational programs, is as critical for caregivers as medication for people with dementia (Fisher Center for Alzheimer’s Research Foundation, 2011). Although training needs are diverse and broad, self-care is often overlooked. According to the Alzheimer’s Association (2012), family caregivers of people with dementia are more likely to assist with BADLs than are caregivers of older adults with other conditions; the former typically have to assist with transfers, toileting, bathing, and feeding of people with dementia. Because most family caregivers never receive formal instruction on proper techniques while assisting with BADLs, they are at increased risk for physical injuries (Brown & Mulley, 1997; Sewitch, Yaffe, McCusker, & Ciampi, 2006).
A review of the caregiver intervention literature shows that a variety of broad-themed intervention programs are available to educate, train, and support caregivers, including support groups, counseling, stress management, education in simplification strategies, and environmental adaptations designed to maximize functional independence and safety (Arbesman & Lieberman, 2011; Brodaty, Green, & Koschera, 2003; Dooley & Hinojosa, 2004). Even so, few interventions systematically train caregivers in assisting with BADLs.
Although much research has been conducted in the area of caregiver burden, stress, and overall well-being, little is known about the impact of training family caregivers to assist with care recipient BADLs. Outcomes for both caregivers and care recipients of past caregiver interventions that included ADL training have been inconsistent (Arbesman & Lieberman, 2011; Letts et al., 2011). Clearly, a need exists to investigate the efficacy of programs designed to train family caregivers in the basic skills needed to assist with the functional independence of people with dementia.
The purpose of this study was to examine the feasibility and efficacy of the Family Caregiver Training Program, a manualized training intervention for caregivers of people with dementia. Our goal was to train caregivers to effectively assist with the BADLs of people with dementia throughout all stages of the disease. We hypothesized that the Family Caregiver Training Program would improve caregiver knowledge of and proficiency in these skills, thus ascertaining the program’s viability.
Method
Research Design
We used a one-group pretest–posttest research design with 3-mo follow-up to test our hypothesis. The institutional review boards of Wayne State University and the Greater Michigan chapter of the Alzheimer’s Association approved the study. Informed consent forms were reviewed with and signed by all caregivers before study enrollment.
Participants
Informal caregivers of people with AD and related dementia (i.e., Parkinson’s disease, Huntington’s disease, and other types of dementia) were eligible to participate in this study, whereas formal caregivers or caregivers of people with diagnoses unrelated to dementia were excluded. We circulated informational flyers and used various media outlets that were connected to the local chapter of the Alzheimer’s Association. Additional participants were recruited through word of mouth, the Alzheimer’s Association Helpline, other Alzheimer’s Association workshops, and the Alzheimer’s Association chapter newsletter.
Instruments
Caregiver ADL Knowledge Test.
We developed an ADL knowledge test for family caregivers because we could not identify a tool for informal caregivers with established reliability and validity. The 18-item caregiver ADL knowledge test consisted of six multiple-choice questions corresponding to the topics in each of the three training modules. These questions were modified from the original 18 true–false questions developed for the caregiver training protocol by the Greater Michigan chapter of the Alzheimer’s Association (Astfalk et al., 2002) to increase reliability and lessen the chance of guessing a correct answer (Frisbie, 1973). Each of the questions consisted of a response stem with four responses and one correct answer. For example, in Module 3, one of the items was as follows:
People with dementia may have a lack of interest in food. This may be due to:
A) improved senses, B) an increased need for calories, which may accompany aging, C)
The ADL knowledge tests were administered before and after each training module, followed by group discussion to educate caregivers on the rationale for the correct answers.
Content validity of the pretest and posttest tools was evaluated by sending the revised questions to a panel of three clinicians experienced in dementia care for independent ratings on relevance and usefulness. Interrater agreement on content validity was good, as demonstrated by the intraclass correlation coefficient values of .95 for communication and nutrition, .95 for toileting and transfers, and .83 for dressing and bathing. On a practical level, all participants were observed until they had completed the competency tests with safe and appropriate techniques.
Depression Screening.
The Geriatric Depression Scale (GDS) Short Form was self-completed in about 5–10 min by the caregivers at baseline, before training. We chose the GDS to screen for depression because it has been found to have good validity and reliability, with 92% sensitivity and 89% specificity, consistent with diagnostic criteria (Greenberg, 2012). Although the GDS was created to test depression in older adults, no evidence exists to suggest that it cannot be used with slightly younger adults because the median age of study caregivers was 46–60. The GDS Short Form tests nonsomatic symptoms of depression in older adults and is therefore less likely to be misperceived for depression related to physical illness (Covinsky et al., 2003). In addition, use of the GDS as a depression measure for dementia caregivers has been well studied (Castle, Wilkins, Heck, Tanzy, & Fahey, 1995; Covinsky et al., 2003; Mittelman, Haley, Clay, & Roth, 2006; Naglie et al., 2011).
Quality Assurance Form.
This 12-item tool, developed by the local Alzheimer’s Association chapter, was used to collect demographic data and evaluate the quality of training modules. The form was used in various programs provided by the local chapter and was administered at the end of the last training module.
Baseline and Follow-Up Interviews.
At baseline and 3 mo after completing the Family Caregiver Training Program, all caregivers were interviewed by phone using a six-item questionnaire to measure the general and ADL-related use of medical services (visits to a doctor’s office or emergency room) by both caregiver and care recipient. The follow-up interview also included three closed-ended items:
Are you still performing the skills you learned in the training modules? Yes/No
Do you still remember the skills you learned in the training modules? Yes/No
Are these skills helpful in your role as caregiver? Yes/No
Intervention
Caregiver Training.
A team of interdisciplinary professionals developed the Family Caregiver Training Program in collaboration with the Alzheimer’s Association Greater Michigan chapter through a grant from the Community Foundation for Southeastern Michigan. The training manual consisted of three modules on safe and effective ways of assisting with six ADLs and was converted from overhead projector slides into PowerPoint presentations. Module 1 trained caregivers on communication and nutrition, with a focus on eating and feeding techniques; Module 2 focused on toileting and transferring; and Module 3 covered bathing and dressing, including an overview of grooming (Table 1). Training methods included presentations with short explanations, group discussions, real-life demonstrations, and role-playing. Each training module lasted approximately 2 hr with one short break, including time for pre- and posttests.
Sample of Useful Caregiving Tips Provided by the Family Caregiver Training Program
Hands-On Demonstration.
All caregivers completed physical competency checks at the end of each module to demonstrate learning. The test for the first module provided opportunities for caregivers to feed a partner (a fellow caregiver attending the course) using appropriate head positioning, verbal and nonverbal skills, and age-appropriate verbal cues. In the second module, caregivers demonstrated stand-pivot and modified sit-pivot transfers with their partner while the trainer checked for good body mechanics, positioning, and appropriate verbal and nonverbal cues. For the last performance test, caregivers assisted with dressing by providing limited clothing choices and gently maneuvering the arm and shoulder into clothing while using appropriate verbal cues. In each simulated situation, the trainer assessed caregivers’ performance and documented whether they had completed tasks safely and effectively.
Professional Trainers.
Four trainers, each with >5 yr experience working with adults with neurological impairments, facilitated the caregiver training modules: one occupational therapist, one legally trained patient advocate, one training specialist for older adult clients with neurological diagnoses, and one rehabilitation administrator for older adults. One of the authors of the Family Caregiver Training Program manual trained each of the trainers on use of the manual and information delivery techniques. In addition, this same trainer attended and observed all modules.
Intervention Fidelity.
Each module followed a manualized protocol (Astfalk et al., 2002) and used the same PowerPoint presentations, pre- and posttest measures, and equipment. On study completion, trainers were asked how closely they had followed the caregiver training manual and module protocol using a Likert scale ranging from 1 (never) to 5 (all of the time). Adherence for the first module (communication and eating) was rated .95; for the second and third modules, it was rated 1.00. These findings, coupled with the use and implementation of a written manual and train-the-trainer modules before study implementation, demonstrate strong adherence to the intervention protocol (Bellg et al., 2004; Murphy & Gutman, 2012).
Data Collection
We collected data at four time points in the study:
Time 1: Before the first module, all caregivers completed informed consent, the baseline questionnaire on medical visits, the GDS Short Form, and the pretest to measure existing knowledge of communication and nutrition. At the end of this module, caregivers practiced positioning and feeding each other while trainers observed for proper technique, and then caregivers completed the knowledge posttest.
Time 2: At the start of the second module, caregivers completed the knowledge pretest on toileting and transfers, and at the end they practiced transfers and completed the knowledge posttest.
Time 3: At the start of the third module, caregivers completed the knowledge pretest on bathing and dressing, and at the end they practiced dressing, completed the knowledge posttest, and completed the quality assurance form.
Time 4: Three months after training, caregivers completed a phone call follow-up on care recipient and caregiver use of general and ADL-related medical services. Caregivers were also asked three questions related to retention and application of training.
Data Analysis
We used SPSS 19.0 (IBM, Armonk, NY) to analyze the data at the univariate and bivariate levels (paired-samples t tests) to determine whether the program led to increased caregiver knowledge in each of the six ADLs. Post hoc power analyses using Gpower3 (Faul, Erdfelder, Buchner, & Lang, 2009; α = .05, two-tailed) indicated that paired-samples t tests for differences in means were adequately powered to detect medium effect sizes (d = .50) by Cohen’s (1988) standards with a power of .99. Additionally, post hoc power analysis indicated that our sample was able to detect medium correlations (r = .3) as statistically significant with a power of .74.
Results
Caregiver Demographics
Our convenience sample consisted of 72 family caregivers of people with dementia who volunteered to participate in the study. Of the 72 participants enrolled in the study, 53 completed the pre- and posttesting in the first module; similarly, 46 completed the evaluations after the second module and 45 completed them after the third module. One participant attended but did not complete any of the evaluations. Each module occurred 1 wk after the previous module, which contributed to the variability in enrolled participants in each session. The majority (82%) of caregivers were female. About 39% of the caregivers were 46–60 yr old, 29% were >61 yr old, 25% were 31–45 yr old, and 7% were 18–30 yr old. About 52% of caregivers reported that they were caring for people with an AD diagnosis; the rest cared for people with related dementia. Of the 68 participants who completed the GDS, about 74% (n = 50) scored in the range that suggested mild depression; only 1% (n = 1) had a score that suggested severe depression. Twenty-five percent (n = 17) screened negatively. Before administering the GDS, we provided all caregivers with information on depression and referrals to local psychological services.
Caregiver Knowledge Gain
A significant gain occurred in caregiver knowledge after each module (Table 2). Mean caregiver knowledge of communication and nutrition before training was 73.87 percentage points (standard deviation [SD] = 19.75). When we reassessed caregivers after training using the knowledge test, we found that their knowledge had improved to 92.13 percentage points (SD = 14.49). A paired-samples t test indicated that this knowledge gain of 18.26 percentage points was statistically significant, t(52) = 7.05, p < .000, d = .97. Similarly, the knowledge gained after Modules 2 and 3 was also of statistical significance: for transfers and toileting, t(45) = 3.10, p = .003, d = .46; for bathing and dressing, t(44) = 2.71, p = .01, d = .40.
Activities of Daily Living Knowledge Pre- and Posttest Results
Note. M = mean; SD = standard deviation.
*p < .05. **p < .001.
We also investigated whether caregivers’ gender, age, number of years as a caregiver, depression, or diagnosis of AD were related to changes in knowledge for each of our modules. Independent-samples t tests revealed that men and women did not significantly differ in knowledge gain throughout all modules. Similar analyses also showed that knowledge gain did not differ between caregivers of people who were diagnosed as having or not having AD in all modules. Correlational analyses were used to assess whether depression and age were related to changes in knowledge for the three modules. Neither depression nor age was significantly correlated with percentage change scores in any of the modules. Thus, diagnosis of AD, caregiver depression, age, and gender did not influence the efficacy of our intervention.
Retention of Knowledge
Only 10 caregivers completed the follow-up survey on use of medical services (doctor’s office visits, emergency room visits) by care recipients and caregivers.
Use of Medical Services by Care Recipients.
At baseline, the mean number of general doctor’s office visits by care recipients was 4.50 (SD = 6.22), which decreased to 3.00 visits (SD = 6.09) after intervention. However, the mean number of care recipient doctor visits that were for ADL-related reasons increased from a mean of 0.40 (SD = 0.84) at baseline to 1.05 (SD = 2.14) at follow-up. We noticed a similar pattern in care recipient use of the emergency room: General use decreased from a mean of 1.70 (SD = 4.72) at baseline to 0.50 (SD = 0.97) at follow-up, but the number of emergency room visits slightly increased as a result of injuries sustained during ADLs.
Use of Medical Services by Caregivers.
The mean number of general doctor’s office visits by caregivers decreased from a mean of 3.10 (SD = 4.63) at baseline to 1.00 (SD = 1.25) at follow-up. Caregiver visits to the emergency room also decreased, from a mean of 0.50 (SD = 1.58) at baseline to 0 at follow-up.
The decrease in the use of medical services by both caregivers and care recipients could be attributed to the ADL-related knowledge and skills gained by participating in the training program. However, because of the small sample size, these findings are limited.
Applied Importance
Data gathered from the open-ended follow-up questions on the perceived benefits of the intervention revealed that caregivers had gained understanding about the need to stay physically and psychologically healthy, as indicated by one caregiver’s comment: “[I] liked how [the training] emphasized to keep [myself] healthy and not try to be perfect 24/7.” In addition, they valued the practical knowledge they had acquired; comments included the following:
“It also gave valuable information on new techniques (verbal) and confirmation [about whether my] current activities were correct.”
“Training helps for safety issues.”
“It especially helped [me] with learning how to lift [my] mother.”
The intervention was also perceived as beneficial in preparing for future challenges as the disease progressed: “Training was valuable and helped [me] see what’s to come down the line.” Finally, the psychosocial support the caregivers received from the group modules was also perceived as beneficial, as indicated by one caregiver’s comment: “It helps you realize you are not alone.”
All caregivers who completed the 3-mo follow-up survey (n = 10) reported that they had retained and continued to perform skills they had learned during the Family Caregiver Training Program and that the content was applicable to their current caregiving situation.
Discussion
Many family caregivers acquire caregiving skills through trial and error or informal instruction from other caregivers (Paun, Farran, Perraude, & Loukiss, 2004), which compromises the safety of both the caregiver and the care recipient, thereby increasing risk of injury. Learning caregiving skills under the guidance of experienced professionals not only improves the quality of patient care but can also reduce the incidence of preventable injuries. Lack of appropriate ADL assistance is known to threaten the care recipient’s functional independence and can lead to an increase in aggressive behavior (Algase et al., 1996). Few dementia intervention programs focus on training caregivers in ADLs, and those that do have had varying results (Dooley & Hinojosa, 2004; Gerdner, Buckwalter, & Reed, 2002; Gitlin et al., 2003; Hepburn, Lewis, Sherman, & Tornatore, 2003; Ostwald, Hepburn, & Burns, 2003). The goal of this study was to inform the gaps in the literature on efficacy of training caregivers in assisting with ADLs—more specifically, BADLs.
Our findings suggest that the Family Caregiver Training Program can be an effective way to train caregivers to correctly and safely assist dementia care recipients with ADLs. Caregivers demonstrated an increase in ADL-related knowledge and skills as a result of participating in the program. We also found that the magnitude of difference in knowledge gain was greatest in the first module (an 18-percentage-point gain after Module 1 vs. about a 6-percentage-point gain after Modules 2 and 3). Interestingly, the caregivers scored higher at pretest for Modules 2 and 3 than for Module 1, which focused on communication and nutrition. This result is consistent with past studies, which have shown that caregivers experience many communication-related challenges—likely attributed to their limited understanding of the cognitive decline commonly seen in people with dementia (Bayles, Tomoeda, & Trosset, 1992; Bourgeois, 2002).
The 10 caregivers who completed both the baseline and the follow-up evaluations reported retaining and continuing to use the skills gained during the program. We found a decrease in the frequency of general doctor’s office visits for both the care recipient and the caregiver. In terms of ADL-related doctor’s office and emergency room visits, we found that although they increased slightly for the care recipient, they decreased for the caregiver. The increase in ADL-related doctor’s office and emergency room visits for the care recipient could be explained by the progressive nature of the disease, which results in functional declines (National Alliance for Caregiving, Schulz, & Cook, 2011). This decrease in caregiver use of medical services is important, given that recent reports have indicated that the average annual medical cost for a middle-aged female caregiver for a care recipient was projected to be $4,766 more than for their noncaregiver counterparts (National Alliance for Caregiving et al., 2011).
Our findings suggest that this intervention increased caregivers’ knowledge of how to address everyday challenges. Although three-fourths of the sample screened positive for signs of depression, it was encouraging to note that caregivers’ mental health status did not affect their learning. The high rate of suspected depression observed in this study is congruent with the literature on the social isolation experienced by caregivers of people with dementia (Brodaty & Donkin, 2009; Sanders, Ott, Kelber, & Noonan, 2008). One advantage of the training program is that caregivers are equipped with skills that will assist them with the challenges they commonly face. This result is best exemplified by the first author’s description of her interaction with a caregiver after the module on communication and nutrition:
A caregiver in her late 40s approached me and asked, “Could you review transfers today as well?” Because my time was up and I had to return to work, I assured her that transfers would be covered the following week. With tears beginning to well, she asked, “Could you just show me something to get through this week?” She had been caring for her mother, with her brother’s help, for well over a year—yet neither of them had received training in any area. In particular, both feared back injuries because of their mother’s declining ability to transfer independently. After briefly assisting the caregiver with some basic transfer skills, it became evident that she was likely to acquire an injury as a result of poor body mechanics, yet a simple review of proper procedures was enough to significantly increase her skill in a critical technique.
The Family Caregiver Training Program seeks to foster the level of care while, at the same time, decreasing or eliminating the risks encountered by both caregivers and those affected by dementia.
Limitations
Limitations include the prolonged 3-wk period in which content was delivered, in addition to use of different caregiver trainers at different sites. Threats to internal validity include a testing threat present in pretest–posttest designs in which the pretest can in fact prepare the participants for the program. Our inability to use a standardized outcome measure is explained in part by the scarcity of skills-based caregiver interventions. Because we could not locate a measure of ADL knowledge for informal caregivers with established reliability and validity in the literature, we developed the ADL knowledge test and used it for the first time in this study. Inclusion of performance-based measurement of care recipients’ ADL skills at both pre- and posttest could also have contributed to the intervention’s efficacy. Finally, the decline in participation at follow-up (3 mo posttraining) demonstrates a mortality threat (Trochim & Donnelly, 2008) because the study occurred at three different time points throughout the course of 3 wk. Attrition at follow-up was primarily a result of the difficulty of reaching caregivers by telephone because of time conflicts or changes in caregiver contact information.
Future Research
We recommend that this protocol be tested in the future using a more rigorous research design and a control group to establish the protocol’s effectiveness. An objective measure examining trainer adherence to protocol should be implemented as well as a physical competency check of caregivers interacting with their own care recipients as opposed to with each other. The use of standardized measures of functional outcomes and evaluation of quality of life indicators for both caregiver and care recipient can further validate the impact of the Family Caregiver Training Program. Developing and implementing a follow-up plan with incremental incentives to complete all phases of the study will be critical for evaluating the knowledge and skills acquired by caregivers over time.
Conclusion
This study demonstrates that the Family Caregiver Training Program is a promising tool for practitioners and researchers who want to educate family caregivers of people with dementia. Community-based skill-building educational programs such as this one address caregivers’ most common challenges and are of immense value to the rapidly growing population of aging people with dementia and their families. Studies in this area will inform some of the gaps in the literature on this vital public health concern.
Implications for Occupational Therapy Practice
Few caregiver training programs have focused on BADLs, and even fewer have trained caregivers in safe and effective ways of assisting with BADLs.
A number of studies have documented that caregiver challenges related to safety and burden increase as the care recipient’s disease progresses (Miyamoto, Tachimori, & Ito, 2010).
More studies have reported the need for ADL education for caregivers (Smale & Dupuis, 2004), as addressed in this training program.
On the basis of this study, the Family Caregiver Training Program appears to be an effective educational tool for family caregivers of people with dementia.
Footnotes
Acknowledgments
The Faculty Research Award Program from the College of Pharmacy and Health Sciences, Wayne State University funded this study. Thank you to Julia Aucoin, Sandra Winkler, and Ariela Neuman from Nova Southeastern University’s PhD in Occupational Therapy Program for their guidance. We also express deep appreciation to the Alzheimer’s Association Greater Michigan Chapter for their collaboration; master of occupational therapy students Renee Plegue, Marwan Francess, and Michelle Ellul for their interest and contributions; and Doreen Head for her supportive leadership.