Name: Victoria Glidewell

Assignment Name: Needs Analysis and Annotated Bibliography

Health Intervention: Still Loving Alice: supporting the self-management needs of
Alzheimer's patients and their caregivers through a virtual forum community
Main Goals of the Intervention: Increase caregiver networks of support, reduce
stress, and increase self-care activities
Date Submitted: 3/8/17
Overall Similarity Rating (from Turnitin): 4%
Word Count: 1,538

It is important to understand Alzheimer’s Disease in order to understand

the needs and health challenges the caregivers face. Alzheimer’s Disease, often
shortened to Alzheimer’s, is an age-related degenerative memory disorder that
often causes dementia. It is most prevalent in individuals ages 65 and up, with
the highest risk for those older than 85; this type of Alzheimer’s is considered
late-onset Alzheimer’s and referenced as the most common form. Early-onset
Alzheimer’s occurs between ages 30 and 50, and only accounts for
approximately five percent of the people with the disease. Although there is no
concrete evidence on what causes late-onset Alzheimer’s, there is some
evidence involving mutated genes for early-onset Alzheimer’s (National Institute
on Aging, 2012). Nevertheless, there is no cure for this chronic illness.
Because there is no cure for Alzheimer’s and the disease involves the
inevitable gradual decline in cognitive thinking and behavioral skills, caregivers
often experience health issues due to their caregiving duties. About 15 million
people in the U.S. alone care for someone who suffers from Alzheimer’s ("Caring
for Someone | alzheimers.gov", 2017), and many of these caregivers are family
members or friends—rendering them informal caregivers (Black et al., 2013).
Informal caregivers generally are older spouses or middle-aged adult children
(Romero et al., 2014), placing them in the Baby Bust or Baby Boomer
generations. Many of these informal caregivers usually do not understand how to
take care of someone with a chronic illness because they either do not have a
medical background or are not professionally trained as a caregiver. Thus, much
of the health issues caregivers experience relate to their mental and emotional
states, which in turn can affect their overall wellbeing.
According to a study performed by Liu et al. (2016) in China, sleep
problems, depression, and anxiety are the most common challenges for informal
caregivers of patients with Alzheimer’s. Aboulafia-Brakha (2014) also shares that
informal caregivers for patients with Alzheimer’s frequently experience
depression, stress, social isolation, and a decrease in leisure activities. Romero
et al. (2014) cite grief, depression, and anxiety as major health risks. Pot et al.
(2014) include feelings of burden on top of depression and anxiety. McKechnie et
al. (2014) state informal caregivers often view caregiving as stressful and
burdensome, which ultimately leads back to increased social isolation and risk of
anxiety and depression. Cristancho-Lacroix et al. (2015) cite chronic stress as a
negative effect from the various aspects of informal caregiving. The consensus in
current research, then, tends to frame depression, anxiety, and stress as the
highest health challenges for informal caregivers for patients with Alzheimer’s.
The caregivers most at risk of facing these health challenges are spouses,
women, and individuals in low-income areas (Joling et al., 2015). Black et al.
(2013) adds to this with statistics showing patients with dementia and their
caregivers have unmet needs related to the disease in areas of support, care,
and services; these unmet needs are especially prevalent in high minority and
low income areas, early-stage dementia patients, and caregivers with little
education.
Informal caregivers also have many informational needs. Many challenges
they face are little knowledge of available care services, wrong coping strategies,
limited support, and not understanding how to manage behavioral problems
(Czaja et al., 2013; Passoni, 2014; Blom et al., 2015). Incorrect management of
educational resources addressing these informational needs frequently result in
the health issues described above. As such, informal caregivers need more help
in managing their health and informational needs.
Not only is Alzheimer’s a health issue for the patients themselves as well
as their caregivers, but it is also a monetary issue for public health. Blom et al.
(2015) cites estimates from Alzheimer Disease International, stating, “there were
approximately 35.6 million people with dementia in 2010, a number that will
nearly double to 65.7 million by 2030 and quadruple to 115.4 million by 2050” (p.
2). These numbers are growing due to today’s extended lifespan. The pro year
worldwide costs of dementia equate just over US$600 billion. These costs
comprise of informal care and direct medical and social care. As of 2013,
Alzheimer Disease International estimated an 85 percent increase in dementia-
related costs by 2030, and these costs are related to the expected numbers
above from projected individuals to develop dementia (Blom et al., 2013). Of the
US$600 billion devoted to dementia per year, in 2010, US$202 billion was from
17 billion hours of unpaid, informal care, and, in 2012, US$216 billion was from
17.5 billion hours of unpaid, informal care (Czaja et al., 2013; Cristancho-Lacroix
et al., 2015). Due to these numbers and monetary figures, family caregivers are
deemed an imperative extension of the healthcare system (Czaja et al., 2013).
Our eHealth intervention, Still Loving Alice, is targeted to informal
caregivers for patients with Alzheimer’s. Our target population’s age group
consists of older spouses and middle-aged adults. Although older generations
today do not use technology as much as younger generations, we are not
concerned with our target population not understanding the technological
mechanisms. This is due to the life expectancy and dementia estimates projected
to the year 2050. Thus, we believe the technology exposal over time to newer
generations will allow future generations to use our eHealth intervention.
Still Loving Alice seeks to reduce caregiver stress related to isolation,
which in turn may avoid depressive and anxiety disorders; increase caregiver
activities to enhance their self-care; and increase caregivers’ networks of support
in order to enhance coping skills. These goals relate to the health and
informational needs for informal caregivers for patients with Alzheimer’s. We will
know our eHealth intervention is successful if informal caregivers feel less
isolated; if informal caregivers have more contacts for support than they did
before using our intervention; and if informal caregivers report having more
access to health and fitness activities as well as local caregiving services than
they did before using our intervention. In using our eHealth intervention, informal
caregivers will have access to virtual communities, and, thus, more knowledge of
other informal caregivers going through similar circumstances; informal
caregivers will develop positive coping strategies and techniques for managing
their time and stress; and informal caregivers will know about local resources
through a directory of services tailored to caregiving support, such as web
addresses, phone numbers, and company locations. These informational goals
will ensure informal caregivers no longer: lack the knowledge of where to access
care services, practice wrong coping strategies, or have limited support
networks.
Informal caregivers that use Still Loving Alice should be able to provide or
receive social support for other informal caregivers through virtual communities;
participate in or plan local community events that welcome Alzheimer’s patients
with other informal caregivers; and locate applicable caregiving services based
on where they live. We hope that, but utilizing Still Love Alice, informal caregivers
will seek out help via the Still Love Alice virtual community or with a counselor via
the directory whenever they feel depressed or stressed; will attend the planned
local activities whenever they feel isolated; and will maintain healthy coping skills
through the networked support.
There are many benefits for developing an eHealth intervention for
informal caregivers for patients with Alzheimer’s. Internet interventions,
specifically, allow informal caregivers to receive the support needs they require if
they have no transportation for face-to-face interactions, no time due to
caregiving, or do not feel safe leaving their loved one unattended (Pot et al.,
2015; Cristancho-Lacroix et al., 2015). With all these proposed intervention
goals, however, come possible limitations. These limitations involve lower
income communities and their ability to access the proposed eHealth
intervention. Most people today do have access to technology, but Czaja et al.
(2013), in developing a videophone intervention to test in minority communities,
state there needs to be more evaluation on how technologies impact informal
caregivers’ caregiving needs in these communities due to lower access to
healthcare-based technology interventions. Having Internet access and
computers in community libraries may help to overcome these limitations.
Alzheimer’s Disease is a growing public health issue. Life expectancies
are increasing, and with this, more individuals are at risk for developing
Alzheimer’s than ever before. With more individuals developing Alzheimer’s also
means a stronger need for more caregivers. This puts much pressure on informal
caregivers because they already are at risk for mental and emotional health
issues, such as depression, anxiety, and stress. It is imperative to develop strong
eHealth interventions for informal caregivers for patients with Alzheimer’s so that
they can live healthy lives while providing much-needed unpaid care to their
loved ones. Still Loving Alice is a step in the right direction in providing positive
coping strategies, networks of support, and self-care services for informal
caregivers. For Still Loving Alice to succeed as an eHealth intervention, the
informal caregivers must adopt positive health behaviors and sustain these
behaviors for the long term. I believe a virtual community is the best way for
these behaviors to have long-term impacts on informal caregivers’ health
because the caregivers will always have access to the virtual community
whenever they need help. Also, having the support from other caregivers close
by, or even around the world, will decrease the common feelings of isolation.
Decreasing feelings of isolation and burden, I believe, are the key factors that will
snowball to implement our other intervention goals.
 References
Aboulafia-Brakha, T. T. (2014). Cognitive-behavioural group therapy improves a
psychophysiological marker of stress in caregivers of patients with
Alzheimer's disease. Aging & Mental Health, 18(6), 801-808. doi:
10.1080/13607863.2014.880406
Black, B. S., Johnston, D., Rabins, P. V., Morrison, A., Lyketsos, C., & Samus, Q.
M. (2013). Unmet needs of community‐residing persons with dementia and
their informal caregivers: Findings from the Maximizing Independence at
Home study. Journal of the American Geriatrics Society, 61(12), 2087-2095.
doi: 10.1111/jgs.12549
Blom, M., Bosmans, J., Cuijpers, P., Zarit, S. H., Pot, A. (2013). Effectiveness
and cost-effectiveness of an internet intervention for family caregivers of
people with dementia: design of a randomized controlled trial. BMC
Psychiatry, 13(17), 1-7. doi:10.1186/1471-244X-13-17
Blom M.M., Zarit S.H., Groot Zwaaftink RBM, Cuijpers P., Pot A.M. (2015).
Effectiveness of an Internet Intervention for Family Caregivers of People with
Dementia: Results of a Randomized Controlled Trial. PLoS ONE 10(2):
e0116622. doi:10.1371/ journal.pone.0116622
Caring for Someone | alzheimers.gov (2017). Alzheimers.acl.gov. Retrieved 5
March 2017, from https://alzheimers.acl.gov/caring.html
Cristancho-Lacroix V, Wrobel J, Cantegreil-Kallen I, Dub T, Rouquette A, Rigaud
ASA Web-Based Psychoeducational Program for Informal Caregivers of
Patients With Alzheimer’s Disease: A Pilot Randomized Controlled Trial. J
Med Internet Res 2015;17(5):e117. doi: 10.2196/jmir.3717
Czaja, S. J., Loewenstein, D., Schulz, R., & Nair, S. N. (2013). A videophone
psychosocial intervention for dementia caregivers. The American Journal of
Geriatric Psychiatry, 21(11), 1071-1081. doi: 10.1016/j.jagp.2013.02.019
Joling, K. J., van Marwijk, H. W., Veldhuijzen, A. E., van der Horst, H. E.,
Scheltens, P., Smit, F., & van Hout, H. P. (2015). The two-year incidence of
depression and anxiety disorders in spousal caregivers of persons with
dementia: who is at the greatest risk? The American Journal of Geriatric
Psychiatry, 23(3), 293-303. doi:10.1016/j.jagp.2014.05.005
McKechnie, V., Barker, C., & Stott, J. (2014). The effectiveness of an Internet
support forum for carers of people with dementia: a pre-post cohort study.
Journal of medical Internet research, 16(2), e68. doi:10.2196/jmir.3166
National Institute on Aging. (2012, September). Preventing Alzheimer's Disease:
What Do We know? National Institutes of Health.
Passoni, S. (2014). Cognitive Behavioral Group Intervention for Alzheimer
Caregivers. Alzheimer disease and associated disorders. 23(3): 275-282.
doi:10.1097/WAD.0000000000000033
Pot, A. M., Blom, M. M., & Willemse, B. M. (2015). Acceptability of a guided self-
help internet intervention for family caregivers: Mastery over dementia.
International Psychogeriatrics, 27(8), 1343-1354.
doi:10.1017/S1041610215000034
Romero, M. M., Ott, C. H., & Kelber, S. T. (2014). Predictors of grief in bereaved
family caregivers of person's With Alzheimer's disease: A prospective study.
Death studies, 38(6), 395-403. doi: 10.1080/07481187.2013.809031
1. Czaja, S. J., Loewenstein, D., Schulz, R., & Nair, S. N. (2013). A
videophone psychosocial intervention for dementia caregivers. The
American Journal of Geriatric Psychiatry, 21(11), 1071-1081. doi:
10.1016/j.jagp.2013.02.019
a. This study focuses on delivering a psychosocial videophone
intervention to minority caregivers for family members with
dementia. These minority families included African Americans and
Hispanics. The technology sought to provide access to care
services to the caregivers. Minority communities generally do not
have access to these care services because of the lack of
resources. The overall goal of the study was to prove that
technology could help remove the disparity gap in caregivers
having access to care services. An important component of this
study was that this videophone technology was modeled after
REACH II, a successful intervention program, and this study also
proved successful.
b. Although this resource is not an Internet forum, it does provide
valuable insight into developing our eHealth intervention because it
reminds us that we are working with many demographics in our
target population. We must make sure that our technology is
accessible to more than just the privileged because otherwise we
are missing out on key populations that need this health
intervention. Another aspect is a possible language barrier.
Alzheimer’s does not affect only English-speaking individuals, so
this aspect adds an interesting dynamic in our eHealth intervention.
It also helps us understand the impact access to care services has
on informal caregivers. Therefore, we should make our access to
care services as streamlined as possible. This access will make our
eHealth intervention sustainable through supplying quality
information in the hopes that this information will change health
behaviors. The fact that this technology, however, was
administered through a videophone and not on a computer
suggests the possible limitations of our target population not
understanding how to use a computer and navigate the Internet.
We should consider these limitations in the development of our
virtual community by ensuring the technology is simple and not
complex. We can accomplish this by not presenting any
unnecessary information while keeping the intervention as targeted
as possible. The main argument I plan to make in my paper with
regards to this resource is the benefit of providing care service
access through technology because informal caregivers for patients
with Alzheimer’s rarely have any time to search for these care
services any other way.
2. O'Connor, M. F., Arizmendi, B. J., & Kaszniak, A. W. (2014). Virtually
supportive: A feasibility pilot study of an online support group for dementia
caregivers in a 3D virtual environment. Journal of aging studies,30, 87-93.
doi: 10.1016/j.jaging.2014.03.001
a. This study analyzed how a 3D virtual support group could
potentially reduce stress for informal caregivers for patients with
dementia. It cites that the same causes of stress for these informal
caregivers often prevent these individuals from participating in face-
to-face support groups. The developers felt adding a 3D element,
avatars in a chat room, would make the support group more
personal as opposed to traditional message boards. The study
proved successful in that the participants felt less stressed,
depressed, and lonely, as well as overcame any obstacles from
previous attempts in participating in a support group.
b. Although this study claims it provides a low-cost and accessible
online support group option for dementia caregivers, I have a hard
time believing the 3D avatar software is inexpensive. Nevertheless,
the article states that traditional online support groups, like that of
forums, may sometimes come across as impersonal. This is
important for our eHealth intervention because it suggests that our
target population may not feel the personal interactions that we
want them to. To counteract this possible limitation, we can
incorporate profile avatars or pictures so that the caregivers can still
feel connected with others in the virtual community by seeing a
face. The main point I plan to make in my final paper with this
source is how virtual support groups can decrease feelings of
loneliness, depression, and stress in informal caregivers for
patients with Alzheimer’s. This resource confirms the low cost of
online support groups, especially if 3D virtual communities are
considered low in cost. This resource does, however, contradict our
eHealth intervention because this study only involves online
support. Our intervention involves online support and informational
services; therefore, we may find difficulty finding success due to too
many intervention goals. As such, this resource has encouraged
me to think about how we could make our intervention simpler. It
may be too much to try and incorporate too many technological
components to support our intervention goals because then our
target audience may become too overwhelmed with all the possible
resources. After all, we want to make their lives less stressful, so
too much technology components may in fact make their lives more
stressful.
3. McKechnie, V., Barker, C., & Stott, J. (2014). The effectiveness of an
Internet support forum for carers of people with dementia: a pre-post
cohort study. Journal of medical Internet research, 16(2), e68.
doi:10.2196/jmir.3166
 a. This study analyzed the effectiveness of an online support forum
based in the U.K. for dementia caregivers. Although there were not
many negative responses to using this forum and there were many
reported benefits, the online forum did not have an impact on
decreasing feelings of depression or anxiety. It did, however,
improve relationships between the caregiver and the dementia
patient. This resource contributes research on the effectiveness of
online support forums for dementia caregivers. An important idea
brought forth by this source is that computer-mediated support
groups for caregivers can meet individual needs whereas face-to-
face support groups only tailor to the group needs.
b. This resource changes the way I think about our eHealth
intervention because although there were many reported benefits of
using this online support forum, the forum did not decrease
depression or anxiety, two health behaviors we wish to change.
Thus, this study refutes our assumption that an online support
forum can decrease feelings of stress, anxiety, and depression. It
does make me wonder if a virtual community is the best eHealth
intervention for dementia or Alzheimer’s caregivers. After all, there
are many online support forums already out on the market, so what
makes our proposed idea any different or better? On the other
hand, however, I think I can use this resource in my final project to
showcase online support forums have the potential to tailor to
individual caregiver needs. I can also use it to advocate for peer
support. This is important to the informational context of our
eHealth intervention because there are many current websites that
provide caregiving tips and educational resources, but, through this
study, research shows peer support is very beneficial for
caregivers—giving and receiving. Therefore, with our potential
access to care services, it may be better to incorporate more peer
events as opposed to doctors or help lines. Although this study did
not reduce depression or anxiety in caregivers, it did reduce
feelings of social isolation, a confirmation on our assumption that
online support forums can reduce loneliness through the virtual
connections with other caregivers. The conflicting results of this
study with our assumptions suggest that we may need to
reevaluate which technological components are appropriate for our
target population in order to meet all our eHealth intervention goals.
4. Blom M.M., Zarit S.H., Groot Zwaaftink RBM, Cuijpers P., Pot A.M. (2015).
Effectiveness of an Internet Intervention for Family Caregivers of People
with Dementia: Results of a Randomized Controlled Trial. PLoS ONE
10(2): e0116622. doi:10.1371/ journal.pone.0116622
a. This resource was more focused on providing education and
support and less on changing health behaviors even though it did
succeed in reducing symptoms of anxiety and depression. The
intervention was an Internet guided self-therapy for caregivers over
 the age of 65. It contributes to the field with strong evidence that
Internet support interventions for family caregivers of patients with
dementia are easily accessible and affordable. This information is
especially important because it proves the Internet’s usefulness for
future caregiver generations, as they will be more accustomed to
the Internet. This trial also provides key research on the
effectiveness of Internet interventions for caregivers over the age of
65 because most other randomized control trials are with younger
participants.
b. The main point I intend to make in my final paper regarding support
from this source is that age in our target population is not a limiting
factor in access to and usability of technology. However, this does
not mean we can create a complex eHealth intervention. This trial
was successful because it the Internet intervention was a simple
guided self-help therapy program. Thus, this source reinforces the
idea that the simpler the eHealth intervention is the better. While
the above resource had the potential to tailor to individual caregiver
needs, this study claims that Internet interventions do not, or there
is not enough research to support this claim. This idea makes me
think about our topic more because we need to figure out how to
make our intervention more individualistic. After all, our target
population is very diverse in demographic and socioeconomic
standing. The educational aspect of this resource can also help in
refining some of our target population’s informational needs. This
resource combatted my initial thoughts on self-help programs for
coping skills, as I did not believe instructional guides could prove
beneficial. However, with help from the Internet, these self-help
guides can reduce stress through teaching positive coping skills. A
final thought involves the cost of support for caregivers. This
resource can help in explaining the need for cost-effective support
for dementia caregivers in my final paper because this intervention
was only cost efficient in the short-term; there is not much research
on the cost-effectiveness of Internet intervention programs in long-
term.
5. Cristancho-Lacroix V, Wrobel J, Cantegreil-Kallen I, Dub T, Rouquette A,
Rigaud ASA Web-Based Psychoeducational Program for Informal
Caregivers of Patients With Alzheimer’s Disease: A Pilot Randomized
Controlled Trial. J Med Internet Res 2015;17(5):e117. doi:
10.2196/jmir.3717
a. This trial analyzed the effectiveness of Diaspason, a
psychoeducational program based on the Web for Alzheimer’s
patient caregivers. There were no conclusive results from the trial,
but it did provide valuable research on the type of interventions
Alzheimer’s caregivers are looking for. Most of the caregivers did
not like Diaspason specifically, but they are open to other eHealth
interventions that better suit their needs. Thus, this trial contributes
 to research that caregivers have high expectations when it comes
to eHealth interventions. This is not negative, however. It should be
expected that caregivers have high expectations because their
health issues, as well as their loved ones’ health issues, are at high
risk.
b. This resource opened my eyes about the common behavioral
thinking factors that may prevent our target population from using
our eHealth intervention. These include feeling like they aren’t the
ones that need help, no one knows how to help them, or that it is
too late to help them because they are in too much despair. Thus, I
think one of our biggest intervention obstacles is decreasing
depression because people who already feel depressed often do
not see a way out. Another interesting reaction from the caregivers
in this study was that the intervention lacked human contact. This
goes back to the possibility that forums may not be personal
enough due to the lack of human contact or perceived human
contact. Another opinion from caregivers was that the intervention
was too general. This contradicts my proposed idea of keeping our
eHealth intervention simple. Therefore, we must ensure that our
eHealth intervention is simple but not too simple to where
caregivers see no use of the intervention. Two final reactions from
caregivers that support our proposed eHealth intervention were that
they wanted more personalized support and interaction with peers
and professionals. This supports a similar claim from a different
article that Internet interventions have the potential to provide
individualized support (although this one did not succeed). The
interaction aspect supports our proposed eHealth intervention with
the development of the online forums and directories of services. I
will use this study’s thematic map of opinions from caregivers in my
final paper to address some strengths and limitations of Internet
interventions because these strengths and limitations can overlap
into our proposed eHealth intervention.