Addressing Everyday Challenges: Feasibility of

a Family Caregiver Training Program for People

With Dementia

Rosanne DiZazzo-Miller, Preethy S. Samuel, Jean M. Barnas,

Keith M. Welker

MeSH TERMS OBJECTIVE. The purpose of this study was to examine the feasibility and efficacy of the Family Caregiver
 activities of daily living Training Program for assisting with the basic activities of daily living of people with dementia.

 caregivers METHOD. A one-group pretest–posttest research design with a 3-mo follow-up was used to examine the
efficacy of a manualized education program for caregivers. The 6-hr training was delivered to 72 family
 dementia
caregivers over 3 consecutive weeks (2 hr/wk) by trained clinicians.
 family
RESULTS. Caregivers showed a significant gain in knowledge of how to effectively assist with commu-
 health education
nication and nutrition, t(52) 5 7.05, p < .000; transfers and toileting, t(45) 5 3.10, p < .003; and bathing
 program evaluation and dressing, t(44) 5 2.71, p < .01, of their care recipients.
CONCLUSION. Our findings demonstrate that this manualized intervention protocol is a promising
method of equipping family members with the skills needed to face their everyday challenges in caring
for people with dementia.

DiZazzo-Miller, R., Samuel, P. S., Barnas, J. M., & Welker, K. M. (2014). Addressing everyday challenges: Feasibility of
a family caregiver training program for people with dementia. American Journal of Occupational Therapy, 68, 212–
220. http://dx.doi.org/10.5014/ajot.2014.009829

Rosanne DiZazzo-Miller, DrOT, OTRL, CDP, is

Assistant Professor, Occupational Therapy Program,
College of Pharmacy and Health Sciences, Wayne State
D ementia is a generic term used to describe a group of chronic, progressive,
degenerative cognitive disorders that lead to a loss of independent func-
tioning, resulting in a wide-ranging impact on individuals, families, and health
University, 259 Mack Avenue, Detroit, MI 48201;
[email protected] care systems (National Institutes of Health, 2012). Although about 100 dif-
Preethy S. Samuel, PhD, OTRL, is Assistant
ferent types of dementia exist, Alzheimer’s disease (AD) accounts for more than
Professor, Occupational Therapy Program, Wayne State 60% of all dementias in the population age 65 and older (Nikzad-Terhune,
University, Detroit, MI. 2011; Venes, 2005). Estimates have suggested that dementia affects 3.4 million
Jean M. Barnas, MA, is Program Coordinator, Minds
people in the United States, which encompasses about 14% of those >71 yr old
on Art Program, in collaboration with the Detroit Institute (Plassman et al., 2007). The projected increase in the older adult population
of Arts, Southfield, MI. (>65 yr) from 35 million to 82 million between 2000 and 2050, coupled with
Keith M. Welker, MA, is Research Assistant,
evidence that the incidence of dementia steadily increases with age, makes it
Department of Psychology, Wayne State University, a major public health concern.
Detroit, MI. 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 ma-
terial 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

212 March/April 2014, Volume 68, Number 2

with a disability, chronic illness, or aging-related decline. people with dementia (Fisher Center for Alzheimer’s
About 43.5 million caregivers provide unpaid care for Research Foundation, 2011). Although training needs are
adult family members or friends ³50 yr old. Caregivers diverse and broad, self-care is often overlooked. Accord-
are predominantly female (66%), with an average age of ing to the Alzheimer’s Association (2012), family care-
48 (Family Caregiver Alliance, 2012). Roughly 94% of givers of people with dementia are more likely to assist
caregivers care for a relative (62% for a parent or parent- with BADLs than are caregivers of older adults with other
in-law, 17% for a grandparent, 6% for a spouse, and 9% conditions; the former typically have to assist with
for another relative) and 6% care for a friend (National transfers, toileting, bathing, and feeding of people with
Alliance for Caregiving, 2009). dementia. Because most family caregivers never receive
We use the term family caregivers to refer to informal, formal instruction on proper techniques while assisting
nonpaid caregivers who are usually members of the im- with BADLs, they are at increased risk for physical injuries
mediate family but can also include relatives, friends, and (Brown & Mulley, 1997; Sewitch, Yaffe, McCusker, &
acquaintances. Family caregivers assist with a wide range Ciampi, 2006).
of activities of daily living (ADLs). According to the A review of the caregiver intervention literature shows
Occupational Therapy Practice Framework: Domain and that a variety of broad-themed intervention programs are
Process (American Occupational Therapy Association, available to educate, train, and support caregivers, in-
2008), ADLs are classified as either basic activities of cluding support groups, counseling, stress management,
daily living (BADLs), such as bathing, grooming, dress- education in simplification strategies, and environmental
ing, transfers, and eating, or instrumental activities of adaptations designed to maximize functional independence
daily living, which include communication, meal prepa- and safety (Arbesman & Lieberman, 2011; Brodaty,
ration, home safety, community mobility, and financial Green, & Koschera, 2003; Dooley & Hinojosa, 2004).
management. Even so, few interventions systematically train caregivers
The annual economic value of the care provided by in assisting with BADLs.
family caregivers, if they were reimbursed for all their vol- Although much research has been conducted in the
untary services, was estimated in 2006 to be $350 billion area of caregiver burden, stress, and overall well-being,
(Houser & Gibson, 2008). In comparison, the national little is known about the impact of training family care-
Medicare expenditure in the same year was only $374 mil- givers to assist with care recipient BADLs. Outcomes for
lion (Henry J. Kaiser Family Foundation, 2007). This dis- both caregivers and care recipients of past caregiver
crepancy highlights the ramifications if this voluntary interventions that included ADL training have been in-
workforce of caregivers did not exist (Perkins, 2011). Care- consistent (Arbesman & Lieberman, 2011; Letts et al.,
giving is clearly a public health issue of national significance, 2011). Clearly, a need exists to investigate the efficacy of
and one that will gain prominence as baby boomers age. programs designed to train family caregivers in the basic
skills needed to assist with the functional independence of
Caregiver Challenges people with dementia.
The purpose of this study was to examine the feasi-
Caring for a person with dementia can be especially de-
bility and efficacy of the Family Caregiver Training
manding, largely because few familial caregivers receive
Program, a manualized training intervention for caregivers
training in the skills needed to provide care (Kuhn, 2001;
of people with dementia. Our goal was to train caregivers
Parks & Novielli, 2000). This difficulty is compounded
to effectively assist with the BADLs of people with de-
by the fact that as dementia progresses, caregivers must
mentia throughout all stages of the disease. We hypoth-
assume additional responsibilities to properly care for and
esized that the Family Caregiver Training Program would
sustain the person with dementia in his or her home
improve caregiver knowledge of and proficiency in these
(Kuhn, 2001). With little to no training, caregivers typi-
skills, thus ascertaining the program’s viability.
cally experience adverse physical, psychological, social, and
financial hardships for which they are generally unprepared
(Shah & Wadoo, 1994). Without adequate supports, Method
caregivers are at high risk for physical injuries, caregiver
stress, and burnout (Gerdner, Hall, & Buckwalter, 1996; Research Design
Schulz & Martire, 2004). We used a one-group pretest–posttest research design with
Participation in support groups, as well as educational 3-mo follow-up to test our hypothesis. The institutional
programs, is as critical for caregivers as medication for review boards of Wayne State University and the Greater

The American Journal of Occupational Therapy 213

Michigan chapter of the Alzheimer’s Association ap- and .83 for dressing and bathing. On a practical level, all
proved the study. Informed consent forms were reviewed participants were observed until they had completed the
with and signed by all caregivers before study enrollment. competency tests with safe and appropriate techniques.
Depression Screening. The Geriatric Depression Scale
Participants (GDS) Short Form was self-completed in about 5–10 min
Informal caregivers of people with AD and related de- by the caregivers at baseline, before training. We chose
mentia (i.e., Parkinson’s disease, Huntington’s disease, the GDS to screen for depression because it has been
and other types of dementia) were eligible to participate found to have good validity and reliability, with 92%
in this study, whereas formal caregivers or caregivers of sensitivity and 89% specificity, consistent with diagnostic
people with diagnoses unrelated to dementia were ex- criteria (Greenberg, 2012). Although the GDS was cre-
cluded. We circulated informational flyers and used ated to test depression in older adults, no evidence exists
various media outlets that were connected to the local to suggest that it cannot be used with slightly younger
chapter of the Alzheimer’s Association. Additional par- adults because the median age of study caregivers was 46–
ticipants were recruited through word of mouth, the 60. The GDS Short Form tests nonsomatic symptoms of
Alzheimer’s Association Helpline, other Alzheimer’s As- depression in older adults and is therefore less likely to be
sociation workshops, and the Alzheimer’s Association misperceived for depression related to physical illness
chapter newsletter. (Covinsky et al., 2003). In addition, use of the GDS as
a depression measure for dementia caregivers has been
Instruments well studied (Castle, Wilkins, Heck, Tanzy, & Fahey,
1995; Covinsky et al., 2003; Mittelman, Haley, Clay, &
Caregiver ADL Knowledge Test. We developed an ADL
Roth, 2006; Naglie et al., 2011).
knowledge test for family caregivers because we could not
Quality Assurance Form. This 12-item tool, developed
identify a tool for informal caregivers with established
by the local Alzheimer’s Association chapter, was used to
reliability and validity. The 18-item caregiver ADL
collect demographic data and evaluate the quality of
knowledge test consisted of six multiple-choice questions
training modules. The form was used in various programs
corresponding to the topics in each of the three training
provided by the local chapter and was administered at the
modules. These questions were modified from the original
end of the last training module.
18 true–false questions developed for the caregiver
Baseline and Follow-Up Interviews. At baseline and 3 mo
training protocol by the Greater Michigan chapter of the
after completing the Family Caregiver Training Program,
Alzheimer’s Association (Astfalk et al., 2002) to increase
all caregivers were interviewed by phone using a six-item
reliability and lessen the chance of guessing a correct
questionnaire to measure the general and ADL-related use
answer (Frisbie, 1973). Each of the questions consisted of
of medical services (visits to a doctor’s office or emergency
a response stem with four responses and one correct an-
room) by both caregiver and care recipient. The follow-
swer. For example, in Module 3, one of the items was as
up interview also included three closed-ended items:
follows:
1. Are you still performing the skills you learned in the train-
People with dementia may have a lack of interest in ing modules? Yes/No
food. This may be due to: 2. Do you still remember the skills you learned in the training
A) improved senses, B) an increased need for calories, modules? Yes/No
which may accompany aging, C) depression, D) 3. Are these skills helpful in your role as caregiver? Yes/No
dehydration

The ADL knowledge tests were administered before Intervention

and after each training module, followed by group dis- Caregiver Training. A team of interdisciplinary pro-
cussion to educate caregivers on the rationale for the fessionals developed the Family Caregiver Training Pro-
correct answers. gram in collaboration with the Alzheimer’s Association
Content validity of the pretest and posttest tools was Greater Michigan chapter through a grant from the
evaluated by sending the revised questions to a panel of Community Foundation for Southeastern Michigan. The
three clinicians experienced in dementia care for in- training manual consisted of three modules on safe and
dependent ratings on relevance and usefulness. Interrater effective ways of assisting with six ADLs and was con-
agreement on content validity was good, as demonstrated verted from overhead projector slides into PowerPoint
by the intraclass correlation coefficient values of .95 for presentations. Module 1 trained caregivers on commu-
communication and nutrition, .95 for toileting and transfers, nication and nutrition, with a focus on eating and feeding

214 March/April 2014, Volume 68, Number 2

techniques; Module 2 focused on toileting and trans- module (communication and eating) was rated .95; for
ferring; and Module 3 covered bathing and dressing, the second and third modules, it was rated 1.00. These
including an overview of grooming (Table 1). Training findings, coupled with the use and implementation of
methods included presentations with short explanations, a written manual and train-the-trainer modules before
group discussions, real-life demonstrations, and role-playing. study implementation, demonstrate strong adherence to
Each training module lasted approximately 2 hr with one the intervention protocol (Bellg et al., 2004; Murphy &
short break, including time for pre- and posttests. Gutman, 2012).
Hands-On Demonstration. All caregivers completed
physical competency checks at the end of each module Data Collection
to demonstrate learning. The test for the first module We collected data at four time points in the study:
provided opportunities for caregivers to feed a partner • Time 1: Before the first module, all caregivers com-
(a fellow caregiver attending the course) using appropriate pleted informed consent, the baseline questionnaire on
head positioning, verbal and nonverbal skills, and age- medical visits, the GDS Short Form, and the pretest to
appropriate verbal cues. In the second module, caregivers measure existing knowledge of communication and
demonstrated stand-pivot and modified sit-pivot transfers nutrition. At the end of this module, caregivers prac-
with their partner while the trainer checked for good body ticed positioning and feeding each other while trainers
mechanics, positioning, and appropriate verbal and non- observed for proper technique, and then caregivers
verbal cues. For the last performance test, caregivers completed the knowledge posttest.
assisted with dressing by providing limited clothing • Time 2: At the start of the second module, caregivers
choices and gently maneuvering the arm and shoulder into completed the knowledge pretest on toileting and
clothing while using appropriate verbal cues. In each transfers, and at the end they practiced transfers and
simulated situation, the trainer assessed caregivers’ per- completed the knowledge posttest.
formance and documented whether they had completed • Time 3: At the start of the third module, caregivers
tasks safely and effectively. completed the knowledge pretest on bathing and
Professional Trainers. Four trainers, each with >5 yr dressing, and at the end they practiced dressing, com-
experience working with adults with neurological im- pleted the knowledge posttest, and completed the
pairments, facilitated the caregiver training modules: one quality assurance form.
occupational therapist, one legally trained patient advo- • Time 4: Three months after training, caregivers com-
cate, one training specialist for older adult clients with pleted a phone call follow-up on care recipient and
neurological diagnoses, and one rehabilitation adminis- caregiver use of general and ADL-related medical ser-
trator for older adults. One of the authors of the Family vices. Caregivers were also asked three questions re-
Caregiver Training Program manual trained each of the lated to retention and application of training.
trainers on use of the manual and information delivery
techniques. In addition, this same trainer attended and Data Analysis
observed all modules. We used SPSS 19.0 (IBM, Armonk, NY) to analyze the
Intervention Fidelity. Each module followed a man- data at the univariate and bivariate levels (paired-samples t
ualized protocol (Astfalk et al., 2002) and used the same tests) to determine whether the program led to increased
PowerPoint presentations, pre- and posttest measures, caregiver knowledge in each of the six ADLs. Post hoc
and equipment. On study completion, trainers were power analyses using Gpower3 (Faul, Erdfelder, Buchner,
asked how closely they had followed the caregiver training & Lang, 2009; a 5 .05, two-tailed) indicated that
manual and module protocol using a Likert scale ranging paired-samples t tests for differences in means were ade-
from 1 (never) to 5 (all of the time). Adherence for the first quately powered to detect medium effect sizes (d 5 .50)

Table 1. Sample of Useful Caregiving Tips Provided by the Family Caregiver Training Program
Communication and Nutrition Transfers and Toileting Dressing and Bathing
1. Break down complex tasks into short, simple steps. 1. Use a gait belt to perform all transfers. 1. Develop a consistent dressing routine.
2. Make food choices simple by limiting choices at each 2. Clear clutter from living space (e.g., check 2. Get grab bars or handrails professionally
meal to two or three. throw rugs and extension cords). installed in the tub–shower area.
3. People with cognitive deterioration do not recognize 3. Medical causes of incontinence may include 3. Do not argue if the person with dementia
hunger or thirst. infections and insufficient fluid intake. does not want to bathe; if they allow,
perform a sponge bath.

The American Journal of Occupational Therapy 215

by Cohen’s (1988) standards with a power of .99. Ad- When we reassessed caregivers after training using the
ditionally, post hoc power analysis indicated that our knowledge test, we found that their knowledge had im-
sample was able to detect medium correlations (r 5 .3) as proved to 92.13 percentage points (SD 5 14.49). A
statistically significant with a power of .74. paired-samples t test indicated that this knowledge gain
of 18.26 percentage points was statistically significant,
t(52) 5 7.05, p < .000, d 5 .97. Similarly, the knowledge
Results
gained after Modules 2 and 3 was also of statistical sig-
Caregiver Demographics nificance: for transfers and toileting, t(45) 5 3.10,
p 5 .003, d 5 .46; for bathing and dressing, t(44) 5 2.71,
Our convenience sample consisted of 72 family caregivers
p 5 .01, d 5 .40.
of people with dementia who volunteered to participate in
We also investigated whether caregivers’ gender, age,
the study. Of the 72 participants enrolled in the study, 53
number of years as a caregiver, depression, or diagnosis of
completed the pre- and posttesting in the first module;
AD were related to changes in knowledge for each of our
similarly, 46 completed the evaluations after the second
modules. Independent-samples t tests revealed that men
module and 45 completed them after the third module.
and women did not significantly differ in knowledge
One participant attended but did not complete any of the
gain throughout all modules. Similar analyses also showed
evaluations. Each module occurred 1 wk after the previous
that knowledge gain did not differ between caregivers of
module, which contributed to the variability in enrolled
people who were diagnosed as having or not having AD in
participants in each session. The majority (82%) of
all modules. Correlational analyses were used to assess
caregivers were female. About 39% of the caregivers were
whether depression and age were related to changes in
46–60 yr old, 29% were >61 yr old, 25% were 31–45 yr
knowledge for the three modules. Neither depression nor
old, and 7% were 18–30 yr old. About 52% of caregivers
age was significantly correlated with percentage change
reported that they were caring for people with an AD
scores in any of the modules. Thus, diagnosis of AD,
diagnosis; the rest cared for people with related dementia.
caregiver depression, age, and gender did not influence
Of the 68 participants who completed the GDS, about
the efficacy of our intervention.
74% (n 5 50) scored in the range that suggested mild
depression; only 1% (n 5 1) had a score that suggested Retention of Knowledge
severe depression. Twenty-five percent (n 5 17) screened
Only 10 caregivers completed the follow-up survey on use
negatively. Before administering the GDS, we provided
of medical services (doctor’s office visits, emergency room
all caregivers with information on depression and referrals
visits) by care recipients and caregivers.
to local psychological services.
Use of Medical Services by Care Recipients. At baseline,
Caregiver Knowledge Gain the mean number of general doctor’s office visits by care
recipients was 4.50 (SD 5 6.22), which decreased to 3.00
A significant gain occurred in caregiver knowledge after
visits (SD 5 6.09) after intervention. However, the mean
each module (Table 2). Mean caregiver knowledge of
number of care recipient doctor visits that were for ADL-
communication and nutrition before training was 73.87
related reasons increased from a mean of 0.40 (SD 5
percentage points (standard deviation [SD] 5 19.75).
0.84) at baseline to 1.05 (SD 5 2.14) at follow-up. We
noticed a similar pattern in care recipient use of the
Table 2. Activities of Daily Living Knowledge Pre- and Posttest emergency room: General use decreased from a mean
Results of 1.70 (SD 5 4.72) at baseline to 0.50 (SD 5 0.97) at
Module N M SD t p (2-tailed) follow-up, but the number of emergency room visits slightly
Communication and nutrition 7.05(52) .000** increased as a result of injuries sustained during ADLs.
Pretest 53 73.87 19.75 Use of Medical Services by Caregivers. The mean
Posttest 53 92.13 14.49 number of general doctor’s office visits by caregivers de-
Transfers and toileting 3.10(45) .003*
creased from a mean of 3.10 (SD 5 4.63) at baseline to
Pretest 46 88.02 11.50
1.00 (SD 5 1.25) at follow-up. Caregiver visits to the
Posttest 46 94.56 12.21
Bathing and dressing 2.71(44) .010* emergency room also decreased, from a mean of 0.50
Pretest 45 86.22 16.42 (SD 5 1.58) at baseline to 0 at follow-up.
Posttest 45 92.89 11.41 The decrease in the use of medical services by both
Note. M 5 mean; SD 5 standard deviation. caregivers and care recipients could be attributed to the
*p < .05. **p < .001. ADL-related knowledge and skills gained by participating

216 March/April 2014, Volume 68, Number 2

in the training program. However, because of the small gaps in the literature on efficacy of training caregivers in
sample size, these findings are limited. assisting with ADLs—more specifically, BADLs.
Our findings suggest that the Family Caregiver
Applied Importance Training Program can be an effective way to train care-
Data gathered from the open-ended follow-up questions givers to correctly and safely assist dementia care recipients
on the perceived benefits of the intervention revealed that with ADLs. Caregivers demonstrated an increase in ADL-
caregivers had gained understanding about the need to related knowledge and skills as a result of participating in
stay physically and psychologically healthy, as indicated the program. We also found that the magnitude of dif-
by one caregiver’s comment: “[I] liked how [the training] ference in knowledge gain was greatest in the first module
emphasized to keep [myself] healthy and not try to be (an 18-percentage-point gain after Module 1 vs. about
perfect 24/7.” In addition, they valued the practical a 6-percentage-point gain after Modules 2 and 3). In-
knowledge they had acquired; comments included the terestingly, the caregivers scored higher at pretest for
following: Modules 2 and 3 than for Module 1, which focused on
• “It also gave valuable information on new techniques communication and nutrition. This result is consistent
(verbal) and confirmation [about whether my] current with past studies, which have shown that caregivers ex-
activities were correct.” perience many communication-related challenges—likely
• “Training helps for safety issues.” attributed to their limited understanding of the cognitive
• “It especially helped [me] with learning how to lift decline commonly seen in people with dementia (Bayles,
[my] mother.” Tomoeda, & Trosset, 1992; Bourgeois, 2002).
The intervention was also perceived as beneficial in The 10 caregivers who completed both the baseline
preparing for future challenges as the disease progressed: and the follow-up evaluations reported retaining and
“Training was valuable and helped [me] see what’s to continuing to use the skills gained during the program. We
come down the line.” Finally, the psychosocial support found a decrease in the frequency of general doctor’s office
the caregivers received from the group modules was also visits for both the care recipient and the caregiver. In
perceived as beneficial, as indicated by one caregiver’s terms of ADL-related doctor’s office and emergency
comment: “It helps you realize you are not alone.” room visits, we found that although they increased
All caregivers who completed the 3-mo follow-up slightly for the care recipient, they decreased for the
survey (n 5 10) reported that they had retained and caregiver. The increase in ADL-related doctor’s office and
continued to perform skills they had learned during the emergency room visits for the care recipient could be
Family Caregiver Training Program and that the content explained by the progressive nature of the disease, which
was applicable to their current caregiving situation. results in functional declines (National Alliance for
Caregiving, Schulz, & Cook, 2011). This decrease in
caregiver use of medical services is important, given that
Discussion recent reports have indicated that the average annual
Many family caregivers acquire caregiving skills through medical cost for a middle-aged female caregiver for a care
trial and error or informal instruction from other care- recipient was projected to be $4,766 more than for their
givers (Paun, Farran, Perraude, & Loukiss, 2004), which noncaregiver counterparts (National Alliance for Care-
compromises the safety of both the caregiver and the care giving et al., 2011).
recipient, thereby increasing risk of injury. Learning Our findings suggest that this intervention increased
caregiving skills under the guidance of experienced pro- caregivers’ knowledge of how to address everyday chal-
fessionals not only improves the quality of patient care lenges. Although three-fourths of the sample screened
but can also reduce the incidence of preventable injuries. positive for signs of depression, it was encouraging to
Lack of appropriate ADL assistance is known to threaten note that caregivers’ mental health status did not affect
the care recipient’s functional independence and can lead their learning. The high rate of suspected depression
to an increase in aggressive behavior (Algase et al., 1996). observed in this study is congruent with the literature on
Few dementia intervention programs focus on training the social isolation experienced by caregivers of people
caregivers in ADLs, and those that do have had varying with dementia (Brodaty & Donkin, 2009; Sanders, Ott,
results (Dooley & Hinojosa, 2004; Gerdner, Buckwalter, Kelber, & Noonan, 2008). One advantage of the training
& Reed, 2002; Gitlin et al., 2003; Hepburn, Lewis, program is that caregivers are equipped with skills that
Sherman, & Tornatore, 2003; Ostwald, Hepburn, & will assist them with the challenges they commonly face.
Burns, 2003). The goal of this study was to inform the This result is best exemplified by the first author’s

The American Journal of Occupational Therapy 217

description of her interaction with a caregiver after the measure examining trainer adherence to protocol should
module on communication and nutrition: be implemented as well as a physical competency check of
A caregiver in her late 40s approached me and asked,
caregivers interacting with their own care recipients as
“Could you review transfers today as well?” Because my opposed to with each other. The use of standardized
time was up and I had to return to work, I assured her measures of functional outcomes and evaluation of
that transfers would be covered the following week. quality of life indicators for both caregiver and care re-
With tears beginning to well, she asked, “Could you cipient can further validate the impact of the Family
just show me something to get through this week?” She Caregiver Training Program. Developing and imple-
had been caring for her mother, with her brother’s menting a follow-up plan with incremental incentives to
help, for well over a year—yet neither of them had complete all phases of the study will be critical for eval-
received training in any area. In particular, both feared
uating the knowledge and skills acquired by caregivers
back injuries because of their mother’s declining ability
over time.
to transfer independently. After briefly assisting the
caregiver with some basic transfer skills, it became ev-
ident that she was likely to acquire an injury as a result Conclusion
of poor body mechanics, yet a simple review of proper
procedures was enough to significantly increase her skill
This study demonstrates that the Family Caregiver
in a critical technique. Training Program is a promising tool for practitioners
and researchers who want to educate family caregivers of
The Family Caregiver Training Program seeks to foster the people with dementia. Community-based skill-building
level of care while, at the same time, decreasing or elimi- educational programs such as this one address caregivers’
nating the risks encountered by both caregivers and those most common challenges and are of immense value to the
affected by dementia. rapidly growing population of aging people with de-
Limitations mentia and their families. Studies in this area will inform
some of the gaps in the literature on this vital public
Limitations include the prolonged 3-wk period in which health concern.
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 Implications for Occupational
designs in which the pretest can in fact prepare the par- Therapy Practice
ticipants for the program. Our inability to use a stan- • Few caregiver training programs have focused on
dardized outcome measure is explained in part by the BADLs, and even fewer have trained caregivers in safe
scarcity of skills-based caregiver interventions. Because we and effective ways of assisting with BADLs.
could not locate a measure of ADL knowledge for in- • A number of studies have documented that caregiver
formal caregivers with established reliability and validity challenges related to safety and burden increase as the
in the literature, we developed the ADL knowledge test care recipient’s disease progresses (Miyamoto, Tachimori,
and used it for the first time in this study. Inclusion of & Ito, 2010).
performance-based measurement of care recipients’ ADL • More studies have reported the need for ADL education
skills at both pre- and posttest could also have contrib- for caregivers (Smale & Dupuis, 2004), as addressed in
uted to the intervention’s efficacy. Finally, the decline in this training program.
participation at follow-up (3 mo posttraining) demon- • On the basis of this study, the Family Caregiver
strates a mortality threat (Trochim & Donnelly, 2008) Training Program appears to be an effective educa-
because the study occurred at three different time points tional tool for family caregivers of people with
throughout the course of 3 wk. Attrition at follow-up was dementia. s
primarily a result of the difficulty of reaching caregivers
by telephone because of time conflicts or changes in
caregiver contact information. Acknowledgments
The Faculty Research Award Program from the College of
Future Research Pharmacy and Health Sciences, Wayne State University
We recommend that this protocol be tested in the future funded this study. Thank you to Julia Aucoin, Sandra
using a more rigorous research design and a control group Winkler, and Ariela Neuman from Nova Southeastern
to establish the protocol’s effectiveness. An objective University’s PhD in Occupational Therapy Program for

218 March/April 2014, Volume 68, Number 2

their guidance. We also express deep appreciation to the Brown, A. R., & Mulley, G. P. (1997). Injuries sustained by
Alzheimer’s Association Greater Michigan Chapter for caregivers of disabled elderly people. Age and Ageing, 26,
their collaboration; master of occupational therapy stu- 21–23. http://dx.doi.org/10.1093/ageing/26.1.21
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