Revised review of literature

ALZHEIMER’S CAREGIVERS’CRY FOR HELP
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Caregiver’s Cry for Help:
Elicitation of Themes from Alzheimer’s Online Support Groups
Abstract
Alzheimer’s disease is the most costly disease in the United States (Alzheimer's Association,
2015). This financial burden is on top of the mental burden that comes from taking care of a
loved one with Alzheimer’s. Many caregivers use online support groups as means to vent
frustration or seek advice. Others use the forums to discuss stories and anecdotes that range from
being positive to negative. Some posts depict a bit of humor, in an attempt to lighten others’
moods. There are many reasons one would visit online support groups. This study is a content
analysis of three online support groups for Alzheimer’s caregivers to discover the reasons or
“themes” behind each individual’s post. This review consists of using pre-established themes in
order to find if the same themes are relevant. Previous studies found the common themes to
reflect caregivers’ needs to: seek control in their lives and the way in which caregivers regained
and maintained the control in their lives.

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Author’s side note: I would like to dedicate this research to my mother. She was diagnosed with
Alzheimer’s at the young age of 55. It is because of her, I am who I am. I will love my mother
long after she has forgotten who I am.
I would also like to dedicate this to my mentor, Dr. Mary Pilgram, and her mother. My mentor
has helped me every step of the way and has been integral to my success. This research was
cathartic for the two of us as she recently lost her mother to Alzheimer’s.
For every person that is affected, there is an innumerable amount of loved ones and friends left
behind. I hope this provides a stepping stone for the need for more information on this terrible
disease.

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Alzheimer’s Caregivers’ Cry for Help:
Elicitation of Themes from Online Support Forums
Adam Dilley
Washburn University

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Introduction
It is estimated that over 5 million people are currently affected by Alzheimer’s disease
making it the number six killer of Americans (2015). With 5 million people and counting,
Alzheimer’s is on the rise. It is estimated that by 2050 there will be nearly 14 billion people
affected worldwide (2015). This dramatic increase will also come with a staggering increase of
costs and caregivers.
Caring for a loved one with Alzheimer’s is difficult. Only 48% of males and 35% of
females report being able to cope with caring for someone with the disease (2015). Caregivers
commonly report fatigue, depression, weight gain, aggression, and anger. For this reason,
caregivers seek for an outlet; many turn to online support groups.
There are a sundry of caregivers-from children to hired in-home nurses, but a good
majority of them are a wife or husband. It is reported that one-third to one-half of all caregivers
are spouses (Cummings S. , 1996). People don’t consider they have a possibility of becoming a
long term care provider. There is an added feeling of guilt to a spouse because they aren’t
wanting to leave the person they love; however, not many people wish to take care of a person
with such a debilitating disease.
Review of Literature
There are many studies that support caregivers using the social forums as means to
relieve the feelings that come from taking care of patients with Alzheimer’s disease. (Jones,
2009); (Frances Griffiths, 2006); (Dorman, Online Support for Caregivers: Analysis of an
internet Alzheimer Mailgroup, 2000) discusses the Problematic Integration Theory and how it
applies to the ways people experience the uncertainty from illness.

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There are two main ways people experience this uncertainty. Adult child often wonder if
they too will develop the disease and people generally evaluate their experiences. These
“evaluative orientations” are a reference to the assessments that people make after they consider
the likelihood of an event occurring (2009). (2009) continues to claim that another type of
burden can present:
Alzheimer’s disease might impact the ill person’s ability to discuss role changes
or make decisions and might therefore leave the family with the responsibility of decreasing
his or her autonomy without explicit consent (2009).
Furthermore, they attest that the financial burden with the unclear future makes having
diseases like HIV or Alzheimer’s more stressful.
Other studies such as (Dorman, Receiving Social Support Online: Implications for Health
Education, 2001) explains that the general public is becoming more comfortable using online
support groups. They continue to express that caregivers are free of barriers such as geography or
time and are accessible to those whom have hearing or seeing disabilities.
These online support groups also allow those who are ill or unable to leave their
caregiving duties to participate. Furthermore, online support groups help prevent certain barriers
that may arise from communication, such as discrimination against: race, gender, illness, age,
income, or social status (2009). According to (2009), online support groups are cost-effective
and can affect more people than conventional, in-person support groups.
There are also studies that suggest a support group, on average, offers a “significant
improvement” for: caregiver burden, depression, subjective well-being, perceived caregiver
satisfaction, ability/knowledge, and care receiver symptoms (Silvia Sorensen, 2002) (Dorman,
2000). (Wright, The Communication of Socail Support Within an On-Line Community for Older

6
Adults: A qualitative Analysis of the SeniorNet Community, 2000) agrees with their findings and
suggest that social support is an “important aspect of older adult relationships and psychological
adjustment in later life. They continue to express that caregivers of those with physical or mental
ailments experience high levels of stress. This increased stress can lead to lowered sense of well-
being, feelings of being burdened, depression, compromised physical health, and premature
mortality (2002).
(Diane Mahoney, 2003) and (Bell, 2003) concur by stating family members suffer from
“caregiver burden”. They discuss family members that care for “ADRD” relatives are at a higher
risk for suffering negative emotional well-being and negative physical health.
In their REACH study, they found that nearly all respondents reported feeling the need to
be at home nearly 24 hours of the day because they felt as if the care recipient would not be safe
home alone (2003). The REACH study continued to report that nearly all of the caregivers felt as
if they were “on” almost 24 hours of the day. It is from this exhaustive schedule that brings
around the reported caregiver physical and mental issues. This research is complimented by
(Cummings S. , 1996). Spousal caregivers provide more support to their ill partners than other
caregivers, who average about 75 hours per week in caregiving activities (1996).
The support and education for Alzheimer’s has been little and late coming. It wasn’t until
1990 that the Psychoeducational Support Group Model for Early Alzheimer’s Patients and their
Spouses was developed (1996). It is because this lack of understanding of the disease that causes
such uncertainty with caregivers and family members.

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Research Questions
Alzheimer’s caregivers are exposed to an extremely high level of stress. This causes
caregivers to experience high levels of uncertainty; encouraging them to seek out control.
Alzheimer’s caregivers tend to experience frustration, anger, confusion, burden, depression,
perceived caregiver satisfaction, ability/knowledge, being socially isolated, and sometimes
expressions of happiness from providing care (1996); (Sorensen, 2002). Online support groups
are a tremendous place to relieve the stress that comes with caring for a loved one with such a
detrimental disease.
There is a scarcity of current research on the usefulness of online support groups for
caregivers whom take care of loved ones with Alzheimer’s. A few studies have suggested that
there is not a clear link between participants’ happiness and improved coping skills (Eysenbach,
2004; Rossier 1989). However, there are some researchers that believe that there is an
improvement in caregivers’ ability to cope and overall attitude (2002); (2003); (1996); (2000).
There are also researchers that find that there are too many variables to attempt to narrow down
the effectiveness of these online support groups (Griffiths, 2006). Therefore, the goal of this
research was to assemble a considerable amount of posts from several high-traffic discussion
forums for Alzheimer’s caregivers, in an effort to discover the processes that caregivers use to
seek support and understand their uncertainty and lack of control. It was important to search for
any possible assistance or roles that the online support groups provided to whom were attempting
to regain control in their own lives. Two questions were re-analyzed, that were first used by
another paper (International Communication Association, 2012), organized this analysis:
RQ1: What themes characterize uncertainty expressions and lack of control by
Alzheimer’s caregivers?

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RQ2: What themes characterize Alzheimer’s caregivers regaining and/or management of
control?
Methods
This research selected and evaluated high-frequented online discussion forums for
caregivers that take care of those with Alzheimer’s disease. Key words such as “Alzheimer’s
disease”, “caregiver”, “support group”, and “forum” were entered into the Google search engine
to discover any forums that would fall under these broad parameters: the forum had to pertain to
Alzheimer’s disease or dementia and be distinctly labeled with the amount of posts, amount of
replies, and the amount of views. The top results were each compared and chosen by the
accessibility and visibility of each of the stated determining factors.
This essay uses three online caregiver’s support groups:
(http://alzheimers.proboards.com/board), (www.agingcare.com/Alzheimers-Dementia), and
(www.alzconnected.org/discussion).
Initially, sampling procedures involved taking the previous month of each forum. This
proved to be unreliable as not every forum provided enough data for extrapolation. The sampling
procedures were then increased to include at least 150 posts from each forum-some forums were
more fruitful than others. The forum collection dates range from 2010-2015 in order to re-
analyze the previously established themes.
Pages of posts were printed off; making sure to maintain the visibility of the posts, the
amount of views, the amount of replies, and the date of the original posting. A highlighted mark
was place on each post with each self-presenting theme possessing its own unique color. A total

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of 754 posts were analyzed for any emergent themes across 3 different Alzheimer’s caregivers’
online support groups. Each forum was kept separated and organized to assure quality control.
Analytic Procedures
This paper used pre-established themes: caregiver’s attempts to seek control in their lives
and the way in which caregivers remained in control. Using this, this paper also included open
coding in case any other themes might self-present. Once more defining factors of what went in
to a common theme were established, the posts were then reexamined. The first themes were
compared to one another to see if they could occupy the same category. It would be nonsensical
to have an abundance of themes. Each theme that was presented was poised against itself and re-
conceptualize to make a larger more generic theme. This was essential in removing any posts
that could be defined under multiple themes. It is important to note that many posts were left
uncategorized because of their level of ambiguity.
Results
The first research question postulated about the uncertainty expressions and the lack of
control that may exist with Alzheimer’s caregivers. This research discovered a list of different
uncertainties that lie with the caregiver. This list includes the need to find placement for those
with Alzheimer’s i.e. should they live at home and with whom, should they move in to a nursing
home, or in to some other facility. This paper discovered six themes that encompassed a broad
range of sources of uncertainty seeking. These data will be presented in Table 1.
Alzheimer’s Disease Caregivers’ Sources of Uncertainty in Online Forums
Understanding unpredictable Alzheimer’s symptoms. Nearly fifteen percent (14.46)
of all the posts reviewed, pertained to seeking information for symptoms. These inquiries were
often repeated through-out the forum such as: urinary tract infections, sleeping problems, speech

10
problems, anger issues, not eating enough, and tremors. Some other more benign problems were
questioned such as: weird food combinations.
…she's pouring the diet sugarinto crackers, breaking up the crackers into
crumbs, and eating the mixture as if it's dessert.
–missingtime January 15, 2015
This lack of food seems to be distracting her aunt and causing her to take things. The
author “missingtime” also continued in her post remarking:
Yet she comes home with tons of pilfered pens and pencils and crayons from the place in her
purse. We have learned that when she's particularly huggy with her purse,that it most likely
means she has something hidden in there and wait until she's distracted to go through it. We
have since sent back two good sized containers full of stolen stuff with a note of apology.
-missingtime January 15, 2015
There are many other symptoms that these forum attendees question, like not realizing
were one is (“Mum’s anger over her whereabouts”), hallucinations, unprompted, and repetitive
habits (“Dear husband keeps packing up all his belongings”).
Posts about symptoms generated 853 total replies and 38, 512 total views. With 109 total
posts about symptoms, 353.32 views were created for each forum post about symptoms.
Managing homecare. A total of 10.88 percent of caregivers expressed concerns with the
proper way to house and maintain support for the affected patient. These forums presented a
place for many people to search for a variety of questions. There were many concerns about
using a nursing home (“Nursing home may not be an option”), (“How [to] handle nursing home
affairs”), and (“Medicare Summary Notice (Hospice charges)”). The forums also question how
to tell your loved one that they need to move or that the nursing home will be their new home:
(“Help! How can I get through to my mom she can’t live alone”) and (“What story should I tell
Mom when we place her in Memory Care on Feb 12”). Many caregivers were seeking
information on unforeseeable or unpredicted problems with moving in to a nursing home or

11
assisting facility: (“Change seating/Tablemates at ASL”), (“Mail dilemma”) and, (“Theft in NHs
and ALFs”). This expanded to more serious family related events such as:
Hi, everyone... I need some advice... My Mom was just diagnosed with Alzheimer's even
though she's been having issues for several years. She lives with me and my 13 year old
daughternow, and has for over a year now. She has lived with us a few times off and on over
the years.My oldest sisternow wants to move her to TX with her, but I am wondering if
that's the best thing for her. Will that be harder since it will all be so unfamiliar? I am to the
point where I will be getting in home care for her, as I can no longer take care of her by myself.
She is very comfortable here and this is "home". Any advice would be much appreciated!
–marcie715 January 28, 2015
Tensions can grow high amongst family members; causing the stress of dealing with
someone with Alzheimer’s to increase. There were a total of 822 replies and 37, 644 total views
from posts that involved homecare/placement/additional caregivers. These posts about placement
accounted for 82 posts which generated a total of 459.07 views per post.
Information seeking for medical treatments. Caregivers seeking information for
different medical treatments accounted for 16.71% of the total posts. There were many concerns
that fell into this category such as questions about medical tests (“Colonoscopy + dementia.
Panicking massively.”), surgeries, the repercussions for falling, the effects of working out, or
medicine: (“Nemenda XR vs. liquid Namenda”), (“Does B12 (Methylocobalmin) Help?”),
(“Depakote side effects-what should doctors know?”), and (“Anyone read that Aricept was not
good for AD?”). Some asked serious questions about stopping medication all together:
…She can't do any activity of daily living by herself. So in this case,I believe by the
company's own findings, that the Aricept is doing nothing.The reason I'm posting this
is that in doing a little research, it would seemlike many of our loved ones in the later
stages (6 and 7) are beyond the point of being helped by Aricept. In addition, now that
there becomes a swallowing issue,I don't believe that giving this pill is necessary
anymore. My mother has not experienced any side effects from the pill. I just think by
the company's skewed criteria that it is time to stop...
-susanzFebruary 4, 2015
Some forum attendees offer up helpful information, such as:
…When a person reaches the terminal stage of Alzheimer's disease,they are no
longer mobile and eating and drinking very little…Eventually the person will stop taking
anything by mouth at all. This is because the body is shutting down.At this point, it is no
longer able to absorb,metabolize or excrete fluids or nutrition. Forcing liquids or even using

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IV fluids puts an added strain on the heart, lungs and other organs.This can cause
breathing problems, edema and other problems. It used to be common for families to
ask for feeding tubes at this point fearing their LO would starve or dehydrate. But a lot
of attention has been paid to the dying process in the last 20 years or so and we know
feeding tubes and IVs will not really extend life by much and can cause discomfort and
distress.We also know that the dying do not experience thirst or hunger any more…
-Stephanie Z, January 23, 2015
She offers up advice on how to deal with a loved one that is beginning to slip in to the
final death spiral. She continues to offer up suggestions a loved one can do such as: stroking the
cheek, applying lotion for hand or foot massages, singing, reading, or just being there for them.
She offered very detailed insight in how a loved one might pass.
Many questions on the forum also queried about alternative medicine such as: coconut
oil, fish oil, or other “essential oils”. A total of 126 posts generated 1,452 replies and a total of
35, 580 views. This comes down to 282.38 views per initial post.
Caregiver’s general plea for help. There are some caregivers that use the forum for a platform
to simply give out a cry for help. These pleas for help vary from topic to topic. Caregiver’s pleas
for help account for nearly nine percent (8.75) of the total amount of posts. A general theme by
these posts, is asking for advice such as: (“Advice?!”), (“Need your help!!”), (“What to do
now?”), or (“Where do I start?!”). Other big issues involve things such as:
My father has been loosing his memory for about 6 years now...but it wasn't actually diagnosed
until about 1 year ago in December. Since then it has been a rapid decline that I have not been
able to catch my breath from. My father is all I have ever really had. My mother died when I
was young and he has always been my best friend. I am 32 now and he is turning 66 next
month, but my dad has been gone for a long time in his mind now. He still remembers me and
the kids but he cannot really recall any events during the day. There are sometimes that he
catchesme off guard and will ask me about something we did togetherlast week. I cry every
time. He saw his grandson swim last Sunday and three times this week he has asked me if he
gets to watch Dominic (his grandson)do his thing again. He cant remember the thing, but he
knows it is something important and wants to see it very bad. I feel like I am living in a
freaking nightmare every day.
-KayannaB January 20, 2015

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Other posts consisted of different topics ranging from (“How do you get over the heart
break?”) to things like (“Suggestions please on how to change my attitude”). This was a very
broad topic that seemed to encompass many things. It generated 784 replies and 38, 052 total
views. With 66 total posts, it produced 576.55 views per post.
Managing venting actions. There were 8.22 percent of total posts that involved
caregivers seeking control over general frustration or anger issues. These issues involved things
like: caregiver burnout, frustration (“More problems”) or (“Upset about mom again”), not
understanding (“What’s really wrong???”), family’s incapability of coping (“My dad isn’t
coping”), (“New low point for dad”), or (“My egotistical dad!”). There are some caregivers that
expressed great concern about diagnoses that didn’t make sense such as:
My 84-year-old mother has Alzheimer's and Asperger's as well as a couple of Traumatic
Brain Injuries as a child....sigh! Acknowledging the Alzheimer's and sorting it from
the Aspy's is my current challenge. Because of the unusualnature of this, there isn't any
support for me to deal with this. I'm very grateful that she's in a small, caring continuous
care community with a staff who's been working as best as they can with this completely
nontraditional woman. Someone suggested there might be someone with a similar problem
- I would love to know there are others out there....are you one of them?
-qwerky54 January 21, 2015
Many more respondents expressed concerns for things that involved family members
(“Resentful Aunt”) or (“Frustrated Daughter”). A large concern came from caregivers not
wanting to sound like a burden or a grievance (“I don’t mean to complain, but….”). Their
frustration is matched by others with frustration of the disease itself (“Alzheimer’s the ultimate
identity thief”), (“Not My Mom-Tired of it all”), or (“I know we are not supposed to take things
personally”).
More caregivers expressed their concerns over not understanding the disease, feeling
overwhelmed, being mentally exhausted, finding themselves very angry, frustrations with
siblings, anxiety, or frustrations about the decisions that they had to make for their loved one.

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Venting supplied a total of 62 total responses. This brought about 516 replies and 28, 357 total
views. Between those, it created 457.37 total views per post.
Caregivers’ Regaining and Managing Control
The second research question is in regards to which themes are representative of
caregivers regaining and/or management of control. There were many different reasons for
caregivers posting that involved regaining and managing control. They all tended to have the
same theme in mind, celebrating positive life events.
Celebrating positive life events. This had the weakest response of 8.75 percent. These
responses included things like: joys, thanks, happiness with the current situation (“So pleased
with how things are working out.”), improvements of symptoms, gratefulness of joining the
forum, general news that the caregiver deemed as “happy news”, or humorous stories (“my
funny sweet dad”).
There were many caregivers that acknowledged how lucky they are-or their loved one-is
to be alive or an expression of simply an enjoyable evening:
Hello everyone,
My daughteris 31 and owns her own business,where she works with local singing artists.
Tonight, she set it up for one of her artists to come to dad's house and sing for him. He
does all the oldies and still yet goodies!Oh my gosh,Dad loved it. Even at this point in
time, he got out the full sentence,"Which one of my family member contacted you?" He
kept repeating the singers name, "Michael" and even said, "We love Michael." Another
one of those special times, where I know Dad knew he is so loved and supported.I don't
know how to make this death process any better. But I also see, how hard he works to
still be a part of life. My tears are flowing again. Keep us in your prayers. His Daughter
-His Daughter January 22, 2015

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The forums were also used to express updates of previously stated problems, new
caregivers’ introductions, offering new techniques, new studies that show promise, or the
discussion of Alzheimer’s awareness projects (“This is way of trying to give a little for the
Alzheimer’s Society of Canada.”)
Celebrating life events accounted for 47 total posts. This created 953 total replies and 45,
763 total views. The amount of views generated 973.68 total views per post.
Discussion
The purpose of this study was to discover the reasons for Alzheimer’s caregivers need for
seeking information and/or maintaining control. This study used (International Communication
Association, 2012) as a starting point for comparison. (2012) used data that were collected 2010
or before. This study used data that were collected from 2010-2015. As to this researcher’s
knowledge, no studies exist that greatly define the relationship between support seeking
caregivers and their relationship with the usage of online forums. This content analysis
discovered six themes that corresponded with this established framework as well as the one
illustrated by (2012).
Five categories demonstrated the lack of control that is experienced by a caregiver while
working with one with Alzheimer’s disease. Caregivers often responded with how grateful they
were for the online forums as well as how helpful the online community is. These support groups
gave caregivers the ability to contact each other; without regards to geography, time,
transportation, or personal discrimination. They were able to actively discuss first-hand
knowledge and help those whom are taking care of someone that is about to enter the next stage

16
of the disease. Caregivers were able to provide personal insight to others that were experiencing
the same kind of problems, such as: family griefs, social dilemmas, and self-care.
A majority of all these postings held a sense of frustration, anger, and/or sadness.
Alzheimer’s is a very unpredictable disease. It is this lack of knowledge that drives the
caregivers to find sources of relief and help. Many caregivers had to deal with taking care of
their loved one as well as: dealing with family arguments, the caregiver’s own need for a social
life, the outstanding cost of the disease, transportation woes, supervision of the Alzheimer’s
patient, or the one with Alzheimer’s hygiene.
Siblings often argue about the placement, treatment, or socializing of an Alzheimer’s
patient. There can be a stigma around those with Alzheimer’s from those in the community,
friends, or even the person’s own family. People’s need for consistency clashes with all the
problems and issues that come from taking care of someone with Alzheimer’s. It is from a
culmination of all these problems that can lead caregivers to feel isolated, even in their own
family. The advice received from others in the family could be misled or contain the same
amount of experience as other family members, giving no one an edge in knowledge.
It is the same token that the knowledge online can be just as misleading. There is not a
checking system in place to know if the one posting actually has any experience with
Alzheimer’s or caregiving. The internet is not patrolled, so one could post bogus things online in
an attempt to swindle or con a caregiver.
It is the last theme, celebrating positive life events, which many people find especially
helpful. One post in particular stands out. “The funny side of dementia” by MrsTerryN drew an
impressive 25, 438 views. There is not another posts that even came close to that number. On

17
average, the positive life events generated almost 980 (973.68) views per original post. It is these
posts that this researcher believes gives people hope. It drives a happier side in people, which is
so hard to do when dealing with someone with Alzheimer’s.
The loneliness and lack of knowledge of the disease can be eased by using these online
forums. The community seems to “get something out” of the online help and continue to come
back to posts to continue dialog. Many caregivers respond by simply letting another caregiver
know that it was a good post or thank them for sharing.
Conclusion
This research had a few limitations such as: single coder, short time frame for postings,
no follow-up with caregivers, and the limited amount of research on the subject. If this research
were to continue, I would encourage the use of more coders. I would like to see a longer study
than this paper; this paper covers five years of postings.
I think it would be very important to get in touch with some of the people posting on the
forums. It would be very beneficial to send out questionnaires to the respondents to discover the
effectiveness of the forums themselves.
Alzheimer’s in the most costly disease in the United States (2012). It is the number six
killer in the United States (2012). Sadly, there is a lack of information for caregiver. It would be
beneficial to both the patient and the caregiver to increase the amount of knowledge for
everyone; ranging from the patient, to the caregiver, or the community.

18
Bibliography
Alzheimer'sAssociation.(2015). RetrievedfromAlzheimer'sAssociationWebsite:www.alz.org

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Table 1:
Sources of
uncertainty
and lack of
control
Total number
of posts
Total percent Total replies Total views Number of
views per
replies
Venting 62 8.22 516 28,357 457.37
Homecare 82 10.88 822 37, 644 459.07
Medical
advice
126 16.71 1,452 35, 580 282.38
Pleas for
help
66 8.75 784 38,052 576.55
Symptoms 109 14.46 853 38,512 353.32
Managing
control
Celebrating
positive
changes
47 6.23 953 45,763 973.68

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