NeuroRehabilitation 18 (2003) 135–146 135

IOS Press

Alzheimer’s Caregiver Support Online:

Lessons learned, initial findings and future
directions
Robert L. Glueckauf∗ and Jeffrey S. Loomis
Center for Research on Telehealth and Healthcare Communications and Department of Clinical and Health
Psychology, University of Florida, Gainesville, FL, USA

Abstract. Family caregivers of older adults with progressive dementia (e.g., Alzheimer’s disease) are faced with a variety of
emotional and behavioral difficulties, such as dealing with persistent, repetitive questions, managing agitation and depression,
and monitoring hygiene and self-care activities. Although professional and governmental organizations have called for the
creation of community-based education and support programs, most dementia caregivers continue to receive little or no formal
instruction in responding effectively to these challenges. The current paper describes the development and implementation of
Alzheimer’s Caregiver Support Online, a Web- and telephone-based education and support network for caregivers of individuals
with progressive dementia. Lessons learned from the first two years of this state-supported initiative are discussed, followed
by the findings of a Robert Wood Johnson Foundation-funded strategic marketing initiative and an initial program evaluation
of AlzOnline’s Positive Caregiving classes. Finally, clinical implications and future directions for program development and
evaluation research are proposed.

1. Overview and rationale for online dementia
caregiver intervention
Approximately 5 million US citizens over 60 have
Alzheimer’s disease or a closely related form of pro-
gressive dementia. The economic consequences of
these disorders are substantial, costing the nation $95
billion a year in medical care, lost productivity, and
care [1,2].
Despite the common belief that elders with Alzheim-
er’s disease reside primarily in long-term care facili-
ties, family members provide the vast majority of care
for these individuals in the home [3]. Caregiving re-
quirements for older adults with dementia typically in-
clude managing potentially injurious behavior to self
∗ Address for correspondence: Robert L. Glueckauf, Ph.D., Center
for Research on Telehealth and Healthcare Communications, Depart-
ment of Clinical and Health Psychology, University of Florida, P.O.
Box 100165, Gainesville, FL 32610-0165, USA. Tel.: +1 352 392
4154 ext. 10; Fax: +1 352 392 2980; E-mail: rgluecka@hp.ufl.edu.
or others, issuing frequent reminders, and monitoring
hygiene and self-care activities. Unfortunately, such
intensive home care activities are performed at high
cost to caregivers in terms of psychological, physical,
and financial resources. Caregivers of persons with de-
mentia typically experience reduced social activities,
disrupted household routines and relationships, as well
as deterioration in mental and physical health [4,5].
In an effort to address these substantial psychoso-
cial, emotional, and physical health concerns, elder
care organizations across the United States have de-
veloped a wide range of respite, assisted living, adult
day care, and support programs for persons with pro-
gressive dementia and their caregivers. Our home state
of Florida, a leader in aging and elder care, currently
funds 13 memory disorder clinics, four model day care
programs, and respite services. There are also four
Florida chapters of the national Alzheimer’s Associ-
ation and over 25 independent Alzheimer’s organiza-
tions that provide support groups, day care, wanderer
identification programs, and basic information about

ISSN 1053-8135/03/$8.00  2003 – IOS Press. All rights reserved

136 R.L. Glueckauf and J.S. Loomis / Alzheimer’s Caregiver Support Online
dementia care. In addition, there are a large number
of private long-term care facilities across Florida that
provide a broad spectrum of residential services [6].
Although these organizations have provided a wide
variety of adult day care and residential services for in-
dividuals with Alzheimer’s and their families, the gap
between caregiver needs and available services contin-
ues to grow, particularly in the areas of health promo-
tion, stress management, and lifestyle enhancement.
Most agencies that serve persons with Alzheimer’s dis-
ease have only limited financial resources, small num-
bers of professional staff, and cover broad geographi-
cal regions. By necessity, the majority of their services
have focused on providing medical diagnostic exams,
home care assistance, adult day care, and respite. As
a consequence, expert consultation on stress manage-
ment, caregiving techniques, and lifestyle enhancement
for caregivers continues to be difficult to obtain, ex-
pensive, and in certain portions of rural Florida and the
nation, completely nonexistent [7,8].
2. Recent advances in telecommunications
technology and caregiver intervention
Fortunately, two recent scientific advances have en-
hanced our prospects for meeting the specialized ed-
ucational and support needs of caregivers of individ-
uals with progressive dementia. One major advance
is the development of telecommunication technologies
that facilitate long distance education and communi-
cation across multiple locations. The Internet holds
considerable promise as a vehicle for meeting the ed-
ucational and support needs of dementia caregivers.
Caregiver information about stress management, the
latest research developments, and referrals to commu-
nity resources can be provided 24 hours a day seven
days a week, simply by clicking a mouse [9] The sec-
ond major advance is the growing body of interven-
tion approaches that have been developed to increase
caregiver’s perceptions of self-efficacy, reduce depres-
sion, and to improve caregiver quality of life. Health
professionals now have at their disposal a toolbox of
empirically-validated strategies that enhance caregiver
well-being, stress management skills, and reduce the
likelihood of caregiver burnout [10,11] For example,
Dolores Gallagher-Thompson and associates have de-
veloped a multi-component cognitive-behavioral pro-
gram for dementia caregivers that includes relaxation
training, increasing pleasurable daily events, and as-
sertiveness training. Across several outcome studies,
this research group has shown significant improvement
on rates of diagnosed depression and emotional well
being in cognitive-behavioral program participants as
compared to controls who showed little changed over
time [12].
3. Florida recognizes need for online dementia
caregiver education and support
In June 2000, the State of Florida Department of
Elder Affairs (DOEA) recognized the need to provide
Internet and toll-free telephone access to expert educa-
tional services for Florida’s caregivers of persons with
progressive dementia. They affirmed that Alzheimer’s
disease is Florida’s epidemic and that caregivers of
Florida’s 400,000 individuals with dementia required
around-the-clock, specialized support and assistance.
Based on his earlier accomplishments in providing
telehealth services to rural individuals with neurolog-
ical disabilities and their families [13,14], the DOEA
awarded an annually renewable grant to the first author,
Robert Glueckauf, director of the University of Florida
Center for Research on Telehealth and Healthcare Com-
munications (CRTHC), to develop a statewide, online
education and support network for caregivers of per-
sons with progressive dementia.
Glueckauf and his staff, Jeff Loomis, Eric Ecklund-
Johnson, Pat Dages, and Hope Benefield, recognized
that the task was a challenging one. They were com-
missioned to build a website that was not only easy to
navigate and accessible to a wide range of users (e.g.,
caregivers with slow modems), but also were required
to establish the most efficacious methods for promot-
ing their web services across the State. In the remain-
der of the paper, we first outline the overall mission of
the dementia caregiver telehealth initiative followed by
a description of the development and lessons learned
from Year 1 of Alzheimer’s Caregiver Support Online
or AlzOnline. Second, we discuss the goals and opera-
tions of our Robert Wood Johnson Foundation-funded
strategic marketing initiative and its outcomes. Third,
we describe the development and lessons learned from
AlzOnline Year 2. Special emphasis will be given to
the challenges we faced in developing and implement-
ing our first and second generation websites, as well as
how these lessons shaped our decisions in establishing
the overall direction of the web- and telephone-based
caregiver initiative. Last, we present the initial out-
comes of our Positive Caregiving classes, followed by a
discussion of clinical implications and future directions
for web- and telephone-based caregiver education and
research.
 R.L. Glueckauf and J.S. Loomis / Alzheimer’s Caregiver Support Online
4. Mission statement
The overall mission of Alzheimer’s Caregiver Sup-
port Online is to: (a) provide Internet- and telephone
based education and support for caregivers of indi-
viduals with progressive dementia, (b) disseminate
empirically-based information about effective coping
and problem-solving skills for caregivers of individuals
with progressive dementia, (c) serve as a clearinghouse
for Internet-based caregiver support services, and (d)
provide a toll-free telephone line to ensure easy and
rapid access to information and support about dementia
caregiving issues.
In keeping with the priorities of the DOEA, we were
charged first and foremost with meeting the needs of
Floridian caregivers. However, DOEA leadership real-
ized that Alzheimer’s Caregiver Support Online was a
service delivery model that other states might choose to
emulate, and thus encouraged CRTHC staff to develop
services that would be useful to dementia caregivers
across the nation and the world.
4.1. Alzheimer’s Caregiver Support Online: Year 1
The first year of the dementia caregiver telehealth
initiative was divided into three separate phases: Phase
1 (product development), Phase 2 (initial evaluation
of website) and Phase 3 (modification and follow-up
evaluation).
4.1.1. Phase 1
The objectives of Phase 1 included: (a) the integra-
tion of our web- and telephone-based education and
support program into the existing Florida network of
dementia care services, (b) the development of our
Internet-based psychoeducational classes, (c) the iden-
tification of web-based caregiver information resources
and pertinent web links, and (d) initial construction of
the website. During this six-month interval, AlzOnline
staff members made regular telephone and face-to-face
contacts with elder care organization personnel (e.g.,
service directors and coordinators of the Area Agencies
on Aging and their lead organizations) and caregiver
advocates across Florida. We also made several presen-
tations and conducted workshops at DOEA-sponsored
events, such as their statewide caregiver forums, elder
leadership institutes, and Alzheimer’s Disease Initia-
tive Advisory Committee meetings.
In developing the psychoeducational classes for the
website, the first author and his postdoctoral associate,
Eric Ecklund-Johnson, drew from two major sources:
137
(a) Dolores Gallagher-Thompson’s and Larry Thomp-
son’s previous caregiver intervention research [10,12,
15,16], and (b) Glueckauf and colleagues’ assertive-
ness training studies [17,18]. The classes were bundled
into three separate packages or modules of four to five
classes each. The three packages and their associated
class offerings are displayed in Table 1.
These web-based materials were collectively labeled
“Positive Caregiving” classes to emphasize the bene-
ficial aspects of the caregiving experience, as well as
to underscore the educational focus of the AlzOnline
website. Packages 1 and 2 (see Table 1) included one
prerecorded class (i.e., Basics of Dementia), followed
by five, 30- to 45-minute live classes, consisting of di-
dactic presentations interspersed with group discussion
and suggested outside activities. Packages 1 and 2 also
were available live over a toll-free telephone line.
The beta version of our first generation website was
completed at the end of Phase 1 and consisted of three
main areas. The first area contained our live, inter-
active, web-based Positive Caregiving classes. Care-
givers were able to hear and see the facilitator (i.e., in-
structor) throughout the class, as well as to view simul-
taneously a slide show that emphasized the key points
of the presentation. In addition, they had the option
of communicating with one another and the facilita-
tor using a chat box that was conveniently located at
the bottom of the web page. To reduce the demand
for bandwidth from our dedicated AlzOnline server,
we employed an application service provider (ASP) to
deliver the secure, live classes, slide presentations and
chat room. 1
The second area of the website was the library. This
section provided caregivers with links to authoritative
publications on dementia care, frequently asked ques-
tions about Internet-based communication, and a pub-
lic message board. The final area of the website con-
tained links to helpful federal, state, and community
resources. We made a concerted effort to include links
to community elder care organizations across Florida.
These senior service organizations play a critical role
in the lives of both caregivers and care recipients with
progressive dementia, providing frontline services and
support in activities of daily living, attendant care, and
crisis management.
1 An ASP is a company that provides videostreaming and other
applications to individuals, agencies and organizations using their
own computer equipment and manpower.
138 R.L. Glueckauf and J.S. Loomis / Alzheimer’s Caregiver Support Online

Table 1
AlzOnline Positive Caregiving classes: Generation 1
Package 1: Increasing Caregiver Awareness and Emotional Well-Being
Basics of Dementia: Memory, Emotions & Behavior
Relaxation Training
ABCs of Positive Thinking
Connection between Daily Events & Emotions
Increasing Positive Emotions
Package 2: Coping with Challenging Caregiving Situations
Basics of Dementia: Memory, Emotions & Behavior
Relaxation Training
ABCs of Positive Thinking
Assertive Responding in Caregiving Situations
Managing Challenging Caregiving Situations
Package 3: Setting Personal Caregiving Goals
Developing New Goals
Implementing New Goals
Review and Feedback on Goal Progress
Community Networks and Techniques for Maintaining Gains

4.1.2. Phases 2 and 3
The primary focus of Phases 2 and 3 was the evalua-
tion of website educational materials, caregiver classes,
message board, and web links. A selected group of
dementia caregivers (n = 11), senior service profes-
sionals (n = 8), and DOEA staff (n = 2) was asked to
rate on a 5-point scale (with 1 = not at all and 5 = com-
pletely) the clarity, usefulness, and ease of navigation
of website reading materials, live caregiving classes,
message board, and state and national web links. Over-
all, reviewers indicated that the website’s written ma-
terials were clear (M = 4.0), understandable, useful
(M = 3.9), and easy to navigate (M = 4.4). They
also reported that the content of the Positive Caregiving
classes was easy to comprehend (M = 3.8) and helpful
in reducing caregiver distress (M = 4.0). However,
several caregivers reported significant difficulties opti-
mizing their computers for two-way chat and/or oral
communication, as well as problems with audio clarity.
Specifically, they reported that class facilitators’ voices
sounded somewhat “tinny,” and at times were difficult
to understand. Toward the end of Phase 3, we incor-
porated reviewers’ recommendations into the website
(e.g., improving audio clarity) and the first generation
of AlzOnline.net was ready to be rolled out to the pub-
lic.
Although the bulk of our efforts was devoted to the
development and evaluation of the website, an impor-
tant goal for AlzOnline Year 1 was to establish a par-
allel, toll-free telephone service. As discussed previ-
ously, the primary objective of the toll-free telephone
line was to provide easy and rapid access to dementia
caregiver information and support. A sizeable minor-
ity of the dementia caregiver population, particularly
older spouses and those who lived in rural areas, did
not have access to the Internet, or if given the option,
would prefer to receive educational services over the
telephone rather than the Internet. Thus, it was essen-
tial to provide an alternative mode of service delivery
for this subpopulation of caregivers. Furthermore, we
needed to have a back up for our web-based programs.
If AlzOnline.net experienced temporary transmission
difficulties or if our server needed repair, toll-free tele-
phone would ensure continuity of service during both
unanticipated and planned down times.
4.2. Lesson learned from AlzOnline Year 1
We faced three major challenges in designing and
implementing the first generation of AlzOnline: (a)
design adaptation, (b) the transmission, privacy, and
size of on-line classes, and (c) the content development
of Positive Caregiving classes
4.2.1. Design adaptation
One of the initial tasks of the AlzOnline technical
staff was to identify an off-the-shelf video streaming
application that was capable of delivering live interac-
tive classes to multiple caregivers across different sites
and of supporting group interaction through use of a
standard chat room. We were particularly interested in
finding an off-the-shelf application that met two basic
requirements: (1) audio that was clear, continuous, and
transmittable at a slow rate of connection to the Inter-
net [e.g., 28.8 kilobytes per second (kbps)], and (2)
video that was well-defined and fluid, particularly in
displaying presentation slides and the facilitator’s body
movements.
We quickly discovered that there were very few prod-
ucts on the market that could deliver our Positive Care-
 R.L. Glueckauf and J.S. Loomis / Alzheimer’s Caregiver Support Online
giving classes with minimal downloading delays and
that required a minimum level of skill for caregivers
to use (i.e., provided a turnkey solution). The only
products available for purchase at the time were Real
Networks Producer and Real Presenter. They both of-
fered live and prerecorded video and audio streaming,
as well as the option of delivering presentation slides
to caregivers. However, neither Real Networks Pro-
ducer nor Real Presenter supported text-based chat, a
required feature of our interactive classes.
In addition to the two Real applications, we exam-
ined solutions from other corporations that claimed
they had a product that would meet our requirements.
Despite our request to purchase their videoconferenc-
ing packages outright, these companies offered only to
lease their products to us, and typically at high cost.
In the final analysis, we signed a contract with an Ap-
plication Service Provider offering a solution that was
both inexpensive and versatile. The product we leased
provided microphone-based, two-way voice commu-
nication and text-based chat, as well as the option of
delivering simultaneous slide presentations.
Another important design issue we faced was to ob-
tain the services of a webmaster who could both think
“outside the box” in developing a site for users with
potentially limited Internet skills, and who could build
a website that conformed to the rules of the World Wide
Web Consortium and the SPRY Foundation on inter-
operability. We hired an experienced webmaster who
possessed both these skills, and decided to outsource
the construction of the original website to Silverscape,
Inc., a local web design company that worked with a
wide range of University of Florida departments and re-
search centers, as well as local businesses. The advan-
tages of this approach were twofold: First, the web de-
sign company would be able to generate a “first pass” of
the website in a relatively short time (i.e., three months)
and at a reasonable cost. Silverscape prided itself on
its capacity to provide a quick turnaround to valued
customers, had a long history of designing health care
websites, and offered reasonably priced services. A
second benefit of hiring a web design company was that
the webmaster would be able to devote the majority of
his time to modifying and fine tuning the features of
the website. The dementia caregiver community, es-
pecially older spouses of persons with dementia, had
specific Internet usage requirements. For example, the
font size of written materials and web banners needed
to be large and easy to read, the amount of text shown
on each page had to be kept to a minimum, and buttons
and tab used to navigate within and between web pages
needed to be salient and easy to operate.
139
4.2.2. Transmission, privacy, and class size
After deciding how to design the first generation of
AlzOnline, we needed to determine how to best deliver
the content. Generally speaking, the process of trans-
mitting live classes over the Internet is a straightforward
task. The most common users of interactive web-based
education are young adults with recent computer equip-
ment, high technology comfort, and in many instances,
high-speed connectivity.
We expected the opposite to be the case for a sizeable
proportion of the dementia caregiver population. Many
caregivers continue to use older computer hardware and
software, as well as slow 28.8 kbps modems. They also
were likely to express a higher level of concern about
privacy and security on the web, and concomitantly, a
lower level of comfort with computer technology than
that of young adult web users.
When first delivering our Positive Caregiving classes,
we believed that we would be able to accommodate
the diverse telecommunication needs of our users. One
of the claims of our first Application Service Provider
product was the capacity to adjust video streaming
transmission rates without compromising audio or
video quality. We were able to stream the instructor’s
live presentation, slides, and text-based chat at either
slow (28.8 kbps) or at higher speeds (128 kbps). Con-
trary to our initial expectations, several caregivers, par-
ticularly those with slow modems, reported that the
class instructor’s voice was tinny and at times, difficult
to comprehend. This user group also felt that the ad-
vantages of viewing the instructor live on the Internet
were outweighed by the mediocre audio quality.
As a result of these concerns, we switched to a sec-
ond ASP model, which removed the live video por-
tion of our streaming classes and replaced it with a
postage stamp-size picture of the instructor. This de-
cision yielded significant benefits. Caregivers reported
a substantial increase the quality of audio transmission
and in turn, heightened perceptions of the clarity and
quality of classes.
Turning to the issue of privacy, both AlzOnline staff
and DOEA project officers felt very strongly that the
privacy and confidentiality of caregiver class discus-
sions was a top priority. This goal was accomplished
through the use of a password requirement for class par-
ticipation, and an Internet certificate that created a se-
cure link between the caregiver and the website. Thus,
only those caregivers who had been issued a unique user
identification and password were able to participate in
our Web-based Positive Caregiving classes.
Another challenge that the AlzOnline staff faced to-
ward the end of the first year of the project was the
140 R.L. Glueckauf and J.S. Loomis / Alzheimer’s Caregiver Support Online
thorny question of optimal class size. Previous re-
search on Internet-based psychoeducational interven-
tions showed that participants place a high priority on
opportunities to interact with class members and to ex-
change health care tips and suggestions [9]. However,
our AlzOnline teaching core was limited to three staff
members. We were concerned that if caregiver demand
for educational services were high, our ability to pro-
vide multiple, small group classes over the week would
be compromised. We simply did not have the resources
to offer more than 12 to 15 live interactive classes per
week.
Ironically, the class size issue turned out to be moot.
Only a small proportion of caregivers (i.e., approxi-
mately 1% or 25 of 2000 visitors who log onto our
website each month) have chosen to participate in our
series of live seven, one-hour classes (see Table 1). The
most highly utilized services on our website have been
the Message Board, Library, and Helpful Links, those
options that require only a limited investment of time
to obtain a considerable amount of information. Thus,
in the final analysis, we decided to maximize the in-
teraction and learning opportunities of individual class
participants, limiting the number of participants in each
class to a maximum of eight.
4.2.3. Content development of online caregiving
classes
In addition to the web transmission and class size
considerations, the AlzOnline staff were faced with the
thorny issue of how to best sequence the web- and
telephone-based caregiving classes. As behavioral sci-
entists we wanted to ensure the integrity and robustness
of the educational intervention and, at the same time,
tailor the curriculum to the specific learning require-
ments of the audience and to the unique features of the
transmission medium (e.g., Internet or telephone). We
also were concerned about how to increase the like-
lihood that caregivers would take the entire series of
classes.2
2 Seven classes or topics have formed the core of previous care-
giver intervention studies: (1) basics of dementia, (2) relaxation
training, (3) ABCs of positive thinking, (4) connection between daily
events and emotions, (5) increasing positive emotions, (6) assertive
responding in caregiving situations, and (7) managing challenging
caregiving situations. These topics were also the thrust of AlzOnline
Packages 1 and 2. Note that a third component or package, Person-
alized Goal Setting, was added to the AlzOnline curriculum. The
rationale for this decision is located in the earlier work of Glueck-
auf and his associates. Webb and Glueckauf [22] found that partic-
ipants who received psychoeducational treatment plus personalized
Our initial thinking about how to order our Positive
Caregiving classes was to follow the sequence of topics
used in previous intervention conducted by our consul-
tants, Dolores Gallagher-Thompson and Larry Thomp-
son [16,21] and by Glueckauf and associates [17,18],
with each of seven classes building on the knowledge
base and skills acquired in the preceding one. How-
ever, our Dept. of Elder Affairs project supervisors
were opposed to this idea, emphasizing that caregivers
should have maximum flexibility in the selection and
order of specific online classes.
The outgrowth of this discussion was a creative com-
promise. We divided our original class curriculum into
three separate packages of four to five classes. Care-
givers had the option of enrolling in either Package 1 or
2, and were able to take the first three classes of each of
these packages in any order they wished. The knowl-
edge and skills acquired in the last two classes, how-
ever, were hierarchical in nature, and thus needed to be
taken in the prescribed sequence (see classes 4 and 5 of
Packages 1 and 2 in Table 1). Note that Package 3, Per-
sonal Caregiving Goals, was offered to caregivers after
they completed either of the first two packages, and was
delivered only over the telephone. Because of the need
to conduct a detailed analysis of caregiver’ cognitions,
emotions, and behaviors during goal-related situations,
we felt that the telephone was the medium of choice.
4.3. Alzheimer’s Caregiver Support Online: Year 2
After successfully competing the construction, beta
testing, and implementation of the first generation web-
site, the AlzOnline staff confronted a new set of un-
certainties and challenges at the outset of Year 2 of the
project. One set of uncertainties and challenges was
common to all new Internet enterprises. We needed to
develop a reliable and sufficiently large user base to en-
sure the further development and sustainability of our
web-and telephone based caregiver initiative. In addi-
tion to this issue, we also received constructive feed-
back from the first cohort of graduates (n = 9) from
our Positive Caregiving classes about certain aspects
of our website, particularly difficulties in navigating
the website, inadequate button sizes, and the crowded
appearance of certain web pages.
goal setting reported greater improvement in psychosocial function-
ing at the 3 month follow-up than controls who received standard
psychoeducation alone.
 R.L. Glueckauf and J.S. Loomis / Alzheimer’s Caregiver Support Online
4.3.1. Strategic marketing initiative
First, it was essential to develop a variety of mecha-
nisms for informing our constituencies, dementia care-
givers and elder care professionals across Florida, about
our services and for attracting them to visit our web-
site. Fortunately, at the beginning of Year 2, we re-
ceived a grant from the Robert Wood Johnson Founda-
tion (RWJF) that afforded us the opportunity to develop
and implement a strategic marketing initiative.
The specific objectives of the RWJF grant were to:
(a) identify target caregiver, community support net-
work and professional audiences who may use, or refer
others to use AlzOnline’s services, (b) identify influen-
tial “opinion leaders” in Florida government, consumer
organizations, and senior services agencies who may
serve as AlzOnline champions, (c) determine promo-
tional opportunities for AlzOnline among target care-
giver, community support network and professional
constituencies, and (d) identify best practices and cross-
promotional opportunities among Internet sites that
currently serve caregivers of individuals with progres-
sive dementia and related chronic medical conditions.
Shortly after obtaining the RWJF grant, we hired the
Wilson Agency located in Jacksonville, Florida to serve
as our marketing consultants. Following their advice,
we convened a small working group conference consist-
ing of statewide leaders from DOEA, the state’s Area
Agencies on Aging, Florida chapters of the Alzheimer’s
Association, senior service organizations, and demen-
tia caregivers. The working group unanimously agreed
that the best way to inform caregivers about AlzOnline
was to encourage grassroots senior service organiza-
tions (i.e., those agencies who influence and support
dementia caregivers) to refer their clients to our web-
site. This “Influence the Influencer” strategy was based
on the premise that there was a smaller, secondary tar-
get group of individuals that, as a consequence of their
professional credibility, coupled with their routine con-
tact with caregivers in local markets, could positively
influence the behavior of our primary target audience
(i.e., dementia caregivers). Other key strategies pro-
posed in the Wilson’s marketing plan were: (a) creating
a public awareness media campaign that specifically
focused on print, radio, and television outlets, (b) po-
sitioning www.AlzOnline.net supervisory staff as ex-
perts in telecommunications and in dementia caregiver
education, and (c) promoting speaking engagements
in statewide caregiver conferences, seminars, seniors
expos and local senior service organizations.
The outcomes of our marketing initiative were im-
pressive. From October 2001 to October 2002, overall
141
utilization of AlzOnline services increased over 300%.
As shown in Fig. 1, the number of new users each
month grew from 1,067 to 3,240 and the total num-
ber of pages visited in a 30-day period increased from
3,867 to 24,805.
4.3.2. Web design issues
As noted above, we received feedback at the begin-
ning of Year 2 from the first cohort of graduates from
our Positive Caregiving classes. Although we already
had revised our first generation website (i.e., the web-
site developed during the first year of the project) based
on reviews from expert caregivers and professional con-
sultants, several class participants, particularly those
who were new to the Internet, still found the website
somewhat difficult to navigate and awkward to use. For
example, they felt that certain portions of the website
(e.g., the Resource section) were difficult to access, and
that the size of some of the website buttons were too
small to locate and depress.
As a consequence of our first cohort’s feedback, we
decided to create a new generation of AlzOnline, “Alz-
Online Generation 2.” The layout of the website was
changed to create a more spacious look, with less text
and larger open spaces. We also increased the size of
buttons to help caregivers navigate across various sec-
tions of the website. In addition to these design modifi-
cations, we combined several caregiver resources (e.g.,
library, message board, and links) under a single Re-
source Center domain.
Our decision to create AlzOnline Generation 2 not
only led to beneficial design changes, but also provided
the opportunity to expand our scope of specialized ed-
ucation services. We had wanted for some time to de-
velop a mechanism for offering important topical in-
formation to caregivers and elder care providers that
would be available any time of the day without delay
or the need for password identification. The upshot
was an innovative and exciting service known as the
“Expert Forum.”
Through both selected list-serve and broad-based fax
notifications, AlzOnline staff invited caregivers and el-
der care professionals across Florida and the nation to
participate in a free, one-hour telephone conference fo-
cusing on the latest developments in dementia research,
strategies for increasing caregiver quality of life, and
practical caregiving considerations. The format of the
Expert Forum conferences consisted of a 20-minute
didactic presentation with accompanying PowerPoint
slides, followed by a 20- to 30-minute question and an-
swer period. We digitally recorded each telephone fo-
142 R.L. Glueckauf and J.S. Loomis / Alzheimer’s Caregiver Support Online

30000

25000

20000

15000

10000

5000

0
1

2
02

02

2
1

02
2

02
2
02
1

2
2
-0

-0
l-0
-0

r-0
-0
-0

-0
-0
n-

n-

p-
g-
b-
ov

ov
ec

ar
ct

ct
ay

Ju
Ap
Ja

Ju

Se
Au
Fe
O

O
M
N

N
D

M
Distinct users/30 period Average Request/Month

Fig. 1. Number of new users and the total number of pages visited in a 30-day period from October 2001 to October 2002.

rum and then made it accessible to users in the “Expert
Forum Archives” section of our website (see Table 2
for a representative list of Expert Forum presentation
topics). Thus, the development of generation 2 of Alz-
Online led to unanticipated secondary benefits. The
new Expert Forum section of the website gave care-
givers and professionals instant access to highly infor-
mative audiovisual presentations in the convenience of
their homes any time during the day or night.
4.4. Lessons learned from AlzOnline year 2
Year 2 was a productive year for Alzheimer’s Care-
giver Support Online. As discussed previously, signif-
icant strides were made in increasing overall utiliza-
tion rates and in improving the ease of navigation of
the website. Nonetheless, we continued to face three
significant challenges, particularly difficulties in web-
based delivery of Positive Caregiving classes, problems
with the design of the home page, and limitations in the
establishment of caregiver community.
4.4.1. Difficulties in delivery of Web-based classes
First, despite multiple efforts during Year 2 to sim-
plify instruction in computer optimization and on-
line class interaction procedures, telecommunications
staff continued to expend considerable effort and time
resolving technical difficulties associated with live,
web-based classroom interactions (e.g., unanticipated
changes in computer software settings, problems with
the use of computer firewalls and of different versions
of Web browsers, as well as general equipment failure),
and caregivers’ confusion about the use of chat and
two-way audio. These difficulties were not only trou-
blesome for staff, but also unfortunately led to caregiver
frustration.
As a consequence of these concerns, we recently
decided to make a gradual transition from live Internet
delivery to the use of prerecorded, Web-based Positive
Caregiving classes, followed one week later by live toll-
free telephone follow-up discussion groups. We expect
that the benefits of this option should be substantial.
Caregivers will be able to take pre-recorded Web-based
classes whenever they wish, anytime of the day or night.
Furthermore, they will have the opportunity to review
portions of a class or an entire class, in preparation
for their follow-up 800-line discussion group. We also
felt that this change in protocol played to the strengths
of the two transmission modalities: (1) the Internet
would be used for what it does best, video streaming
presentations one-way to the user, and (2) the telephone
would be deployed for what it does best, facilitating
interactive group discussions among participants and
the class facilitator.
4.4.2. Problems with design of AlzOnline’s home page
A second major challenge was located in the design
of our home page. In follow-up surveys administered at
the end of Year 2, caregivers indicated that they wanted
direct links on the home page to key sections of the
website, such as the Message Board and the Expert
Forum. In AlzOnline Generation 2 (see Section 4.3.2
above), these services were accessible by clicking the
Resource Center and Caregiver Support links on the
home page, but no formal notification was provided
to guide the user to these options. Thus, we decided
to change the basic layout of the home page to high-
light those services that were most highly utilized by
caregivers.
 R.L. Glueckauf and J.S. Loomis / Alzheimer’s Caregiver Support Online 143

Table 2
Representative Expert Forum conferences
Sleeping, Aging, and Dementia (11/21/02)
Traveling and Dementia (10/24/02)
Overview on Dementia (10/10/02)
Alzheimer’s Drugs – What Are They And Do They Work? (9/20/02)
The Initial Visit to the Doctor for a Dementia Work-up: What to Expect (8/22/02)
Use of Anti-psychotic Drugs in Dementia (8/8/02)
Non-Medication Management of Agitated Behavior (7/11/02)
Driving and Dementia (6/28/02)
Wandering in Dementia: Helping the Lost Become Found (5/20/02)
Medicare and Medicare Rights (4/26/02)
Caregiver Issues on Dementia: After the Diagnosis (2/15/02)
Alzheimer’s Behavioral Management & Caregiving Issues (1/17/02)

4.4.3. Limitations in development of caregiver
community
The third area of concern was located in our aspira-
tion to develop a virtual community among dementia
caregivers. When we originally constructed AlzOn-
line, we conjectured that the best way to build care-
giver community was through the use of the Message
Board. Although the traffic on this user option has been
consistently high, individual Message Board postings
have tended to elicit one or two caregiver responses
apart from those initiated by AlzOnline staff. In effect,
the Message Board inadvertently had evolved into an
‘Ask the Professional’ service, rather than a vehicle for
establishing community among dementia caregivers.
As a consequence, we decided to add a chat room,
“AlzChat,” to facilitate real time interactions among
peers and to facilitate peer socialization. We anticipate
that AlzChat will provide opportunities to obtain useful
caregiving tips and information, enhance perceptions
of social support, and in the long term, build caregiver
community.
4.5. Initial program evaluation
The primary purpose of our initial program evalu-
ation was to assess the effects of AlzOnline’s web-
and telephone-based Positive Caregiving classes on the
psychosocial functioning of caregiver participants, par-
ticularly their perceptions of self-efficacy, emotional
growth, and burden from the caregiving experience.
To date, we have enrolled 40 caregivers in our series
of 7 Positive Caregiving classes. 3 Twenty-one care-
3 Prior to taking interactive web-based classes, each caregiver
needed to optimize their computers using our Application Service
Provider’s set-up program. This set-up program checked the care-
giver’s computer to ensure that it was properly configured for chat
and for two-way audio transmissions. AlzOnline technical staff as-
sisted caregivers in performing the optimization procedure over the
telephone.
givers have completed the seven-session program; 11
are ongoing; 8 dropped out after the initial screen-
ing interview. The primary reasons for dropout were
high involvement with caregiving obligations, compet-
ing work demands, and attendance at other support
groups. Partially confirming these qualitative accounts,
dropouts were more likely to have been employed out-
side the home than completers (p = 0.01). Note that
this was the only pretreatment factor that differentiated
between dropouts and completers.
Caregivers who completed the study were on average
64.4 years old (SD = 8.74). Eighteen participants
were female and 3 were males; 19 were non-Hispanic
Whites and 2 were African Americans; 13 were spouses
and 8 were either daughters or daughters-in law of the
care recipient. Their average length of caregiving and
time spent with care recipient per week was 3.11 years
(SD = 1.44) and 135.48 (SD = 54.1), respectively.
Three dependent measures were used to assess the
effects of the Positive Caregiving classes: Steffen et
al.’s Caregiving Self-Efficacy scale (CSES) [23], Parke
et al.’s Stress-related Growth [24], and Lawton et al.’s
Caregiver Appraisal Inventory (CAI) [25]. The CSES
is a 30-item questionnaire containing three10-item sub-
scales that assess caregivers’ perceived self-efficacy in:
(a) caring for their respite needs, (b) managing dis-
ruptive and challenging behaviors of the care recipi-
ent, and (c) responding to their own cognitions about
caregiving demands. Respondents are asked to rate
their level of confidence (0% = cannot do at all, 50%
moderately certain can do, 100% = certain can do) in
performing a variety of caregiving and self-care activ-
ities if they gave their best efforts. The Stress-related
Growth Scale is a 15-item questionnaire that measures
caregivers’ appraisals of the benefits of the caregiv-
ing experience (e.g., increasing compassion for others,
self-confidence, and perseverance). Respondents are
asked to rate the extent to which caregiving has led to
a variety of positive experiences on a 0 to 2 scale with
144 R.L. Glueckauf and J.S. Loomis / Alzheimer’s Caregiver Support Online
0 = not at all and 2 = a great deal. The Caregiver
Appraisal Inventory is a 19-item questionnaire used to
assess caregivers’ perceptions of the demands and re-
wards of their role and role-related activities. The CAI
contains three subscales that were factor analytically
derived: (a) subjective caregiving burden, (b) positive
aspects of caregiving, and (c) burden. Participants are
asked to rate their appraisals of the consequences of
their caregiving duties on a five-point scale with 0 =
never true and 4 = nearly always true.
Mixed support was obtained for the effectiveness of
AlzOnline Positive Caregiving classes. On the posi-
tive side, participants reported significant pre- to post-
class increases on all three CSES subscales, and con-
comitant decreases in subjective caregiving burden (all
ps < 0.05). Substantial improvements were noted in
their perceptions of self-efficacy in performing routine
caregiving duties and managing challenging care recip-
ient behaviors, as well as their appraisals of the emo-
tional caregiver burden from the pre- to the posttesting
phase. In contrast, caregivers report little or no change
on the positive dimensions of the caregiving experience
(i.e., stress related growth and positive caregiving ap-
praisals), as well as their perceptions of burden in pro-
viding caregiving assistance. Further replication of the
current study is required to determine whether the pos-
itive dimensions of the caregiving role are substantially
less sensitive to the effects of cognitive-behavioral in-
terventions, such as AlzOnline, than negative appraisals
and attributions of self-efficacy in caregiving activities.
Furthermore, caution should be exercised in interpret-
ing the findings of the current investigation. Both small
sample size and the absence of a control condition sub-
stantially limit the internal validity of the results.
5. Future directions and clinical implications
Two future directions are proposed to enhance the
impact and accessibility of Alzheimer’s Caregiver Sup-
port Online services. First, despite the burgeoning
growth of Hispanic-Latino dementia caregivers in the
United States over the past decade, there are currently
only a limited number of education and support ser-
vices that are tailored to the specific needs of these indi-
viduals. This is especially the case for Hispanic-Latino
family caregivers who are primarily Spanish speaking
and have not assimilated into the North American cul-
ture [26].
There are few places in the country where the dearth
of dementia support services is felt more acutely than
in the State of Florida. More than 33,000 older Florid-
ians of Hispanic-Latino descent currently have a diag-
nosis of Alzheimer’s disease or a closely related condi-
tion [27]. Although professional and governmental or-
ganizations have called for the development of demen-
tia care programs tailored to the language and cultural
preferences of Hispanic caregivers, the current gap be-
tween the availability of such services and consumer
demand continues to grow.
In an effort to meet the educational and support
needs of this important caregiver population, AlzOn-
line is in the process of translating all its web- and
telephone-based services into Spanish, including the
Message Board, Positive Caregiving classes, Library,
Helpful Links, and Expert Forum. We also plan to hire
a Spanish-speaking counselor to facilitate telephone-
based caregiver classes, respond to Message Board and
email inquiries, and to promote the website to the His-
panic community in Central and Southern Florida.
A second future direction lies in the reconfiguration
of AlzOnline’s Positive Caregiving classes. We plan
to digitally record the series of seven classes and make
them available on demand to caregiver participants.
Caregivers will be encouraged to view each of the seven
prerecorded classes first, followed one week later by a
live telephone follow-up discussion group. We antici-
pate that this change in protocol will simplify signifi-
cantly Internet-based class instruction, and enhance the
quality of interaction among caregivers and the class fa-
cilitator. Furthermore, it builds on the strengths of each
transmission mode. The Internet is highly effective in
delivering audiovisual instruction one-way (e.g., video
streaming prerecorded classes from the telehealth cen-
ter to the caregiver’s home), but awkward to employ for
two-way oral communication. The opposite is the case
for telephone. Standard toll-free telephone is easy and
convenient to employ for two-way oral communication
(e.g., semi-structured discussion among caregiver par-
ticipants and the class facilitator), but not well suited
for delivering didactic instruction.
Finally, the clinical implications of AlzOnline’s Web
and telephone education and support network are likely
to be substantial. AlzOnline has the potential of serving
as a prototype for other state elder care agencies and
provider networks to follow. The number of adults
who regularly use the Internet to obtain health care
information continues to rise. According to a recent
Harris Poll approximately 110 million adults go online
an average three times a month to obtain information
on health-related topics [28]. A sizeable proportion of
these health seekers are garnering information about
 R.L. Glueckauf and J.S. Loomis / Alzheimer’s Caregiver Support Online
specific treatments for family members with chronic
illnesses and their caregivers.
However, before AlzOnline and other newly devel-
oped Internet-based alternative health care delivery ap-
proaches are widely adopted, further research is needed
to assess their efficacy, cost-effectiveness and gener-
alizability across different caregiver populations. To
this end, Glueckauf and colleagues have recently sub-
mitted a NIMH grant proposal to assess the efficacy
and cost effectiveness of an integrative Internet- and
telephone-based prevention program (i.e., Online Pre-
vention of Depression and Anxiety) on the emotional,
interpersonal, and physical functioning of dementia
caregivers. Quota sampling procedures will be used to
create a pool of 140 non-Black Hispanic, 140 African-
American, and 140 non-Hispanic White caregivers of
adults with progressive dementia located primarily in
South and North Florida. Data will be collected pre-
and one-week posttreatment, as well as at the three-
and six-month post-intervention follow-up.
Acknowledgements
This paper was supported by grants from the State
of Florida Department of Elder Affairs and the Robert
Wood Johnson Foundation. We also gratefully ac-
knowledge the assistance of Pat Dages, Tim Ketterson,
and Eric Sanabria.
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