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The Use of Online Discussion Forums by People with Alzheimer
Disease and their Caregivers
Sanda Erdelez (Professor), The Simmons School of Library and Information Science, USA,
sanda.erdelez@simmons.edu
Sanjica Faletar Tanacković (Associate professor), University of Osijek, Croatia,
sfaletar@ffos.hr
Kornelija Petr Balog (Professor), University of Osijek, Croatia, kpetr@ffos.hr
Ana Ružolčić (Bachelor student), University of Osijek, Croatia, aruzolcic@ffos.hr
Tomislava Žilić (Bachelor student), University of Osijek, Croatia, tzilic@ffos.hr
Abstract
This paper presents findings from the study which investigated information needs of patients with Alzheimer's
Disease (AD) and their caregivers in Croatia. The study was conducted with the help of quantitative analysis
and content analysis of statements on the Croatian Internet forum (Forum.hr) posted by the patients with
Alzheimer's Disease (AD) and their caregivers.
Alzheimer's Disease (AD) is a progressive disease connected with the loss of memory and other cognitive
abilities which interferes with one's behavior, interaction with environment and the overall quality of life. It is
believed that approximately 50 million people all around world suffer from this incurable disease or some other
type of dementia. Although each person experiences dementia in their own way, eventually they are unable to
care for themselves and need help with all aspects of daily life.
Key words: Alzheimer's Disease (AD), patients, caregivers, information needs, Internet,
online forum
Introduction
Alzheimer's Disease (AD), the most common cause of dementia, is a neurological disease
with an unknown cause. The start of the disease is usually gradual and the person’s decline is
often slow. A person diagnosed with AD or other form of dementia exhibits symptoms of
impaired memory and increasing difficulties related to emotion and other cognitive abilities
such as speaking, thinking and making decisions. AD and other types of dementia have
immense negative impact on persons' behavior, interaction with environment and ultimately
the quality of life. AD is a progressive disease and currently available treatments cannot stop
it but only temporarily slow down the symptoms. Although people experience dementia in
their own way, eventually they are unable to care for themselves and need help with all
aspects of daily life. AD affects all groups in society and it is not related to social class,
gender, ethnic group or geographical location. Although AD is more common among elderly
persons, younger persons can also be affected (World Health Organization, 2016).
According to the Alzheimer's Disease International (2015) someone in the world develops
dementia every 3 seconds. The same source reported that there were an estimated 46.8 million
people worldwide living with dementia in 2015. One in 10 Americans (10 %) age 65 and
older has Alzheimer’s dementia (Alzheimer’s Association, 2018), and the latest numbers for
Croatia indicate that there are around 80.000 persons diagnosed with AD (Mimica et al.,
2015). However, as the size of the world population aged 65 and older increases, the number
of persons with AD and other types of dementia is expected to grow. According to
Alzheimer's Disease International (2015) this number will reach 131.5 million in 2050.
Alzheimer's disease is currently ranked as the sixth leading cause of death in the United
States, but recent estimates indicate that the disorder may rank third, just behind heart
disease and cancer, as a cause of death for older people (US Department of Health and
Humans Services, 2016).
Patients with AD in late and end stages ultimately become fully dependent on their caregivers
and require around-the-clock supervision and assistance with daily activities and personal
care. This complex situation leads eventually to a number of larger issues, most importantly
the question of human, legal and financial rights of AD patients and the legal status of their
caregivers. These issue were investigated recently by Dološić (2016) who analysed relevant
Croatian and international legislature and practice and provided recommendations on how to
address the imposed challenges and improve the quality of life of people with AD and their
caregivers.
The constant supervision of people diagnosed with AD usually becomes extremely stressful
and burdensome, both physically and emotionally for the caregivers, who are most often the
family members. For example, in US about 80% of the care of AD patients is provided in the
community by family members (Office of Technology Assessment, 1987). Based on the
statistics from Alzheimer’s Disease International (ADI
) and Alzheimer Europe
, Dološić
(2016) confirms that the situation is similar in Croatia as in and other countries. For example
in Croatia there were 80.864 patients with dementia (1.89% of Croatia's population) in 2012
and at the same time 202.164 individuals, mainly family members, were taking care of them
(Mimica, et. al, 2015).
The role of caregivers in caring for patients with AD and their information and support needs
were addressed by a number of authors. Scholars most often focus on the information and
service/support needs of caregivers because persons with AD (in particular those in late stages
of disease) often can not themself reliably and consistently communicate their needs and
preferences. For example, Haley (1997) acknowledged that caregivers represent a major and
hidden part of the US health care system, and that "unpaid care by family members represents
a critically important but fragile part of long-term care in the United States.“ He emphasized
that caregivers often experience negative mental and physical health effects related to
caregiving stress. He also provided information on effective interventions for caregivers that
can decrease depression and delay nursing home placement and demanded that physicians and
other health care professionals address the concerns of AD family caregivers because they
play a crucial role in the optimal care of these patients.
Wackerbarth and Johnson (2002) conducted a study whose purpose was to identify essential
information and support needs of family caregivers for individuals with Alzheimer's disease
or related dementias and to examine the relationship between caregiver characteristics and
their needs. The study findings showed that caregivers' needs for information concerning
health plan coverage, diagnosis, treatment, legal and financial issues were more important
than general information about the disease. In this study, female caregivers also reported
needs related to support as significantly more than male caregivers. They also emphasized
that practitioners should realize that caregivers may have different information and support
needs and these needs may change throughout the caregiving experience.
Kucmanski et al. (2016) identified gaps in Brazilian health policies and called for the need to
develop and implement strategies for the empowerment and monitoring of family caregivers.
This study analyzed the challenges faced by family members providing day to day care of
patients with Alzheimer's disease in the city of Chapecó, Santa Catarina, Brazil. Their results
showed that caregivers experience a range of situations such as the need to learn about the
disease, dealing with guilt, and handling situations of pain, addiction and physical and
psychological suffering. The study concluded that the importance of introducing and
implementing tools and strategies that provide physical, emotional, psychological and
financial support to family caregivers of patients with AD.
Edelman et al. (2006) conducted one of the rare studies aimed to identify the information and
service needs of both persons with mild and moderate AD and their family caregivers. They
also sought to assess differences and similarities in the needs and perspectives of AD patients
and their caregivers. A checklist of interest in services and information included 22 topics and
priorities in four domains: medical needs and interests, care needs and interests, coping needs
and interests, and service needs and interests. Although more caregivers than persons with AD
reported interest in each topic, 8 of the top 10 topics reported by each group of respondents
were the same. For example, over 90% of all caregivers were somewhat or very interested in
getting more information regarding stage and symptoms of AD, approved drug treatments,
alternative medicine or treatments, and genetic aspects of AD, as well as topics related to
day-to-day care of AD patients including coping with challenging, symptoms, meaningful
activities, dealing with family and friends, and improving communication. Although fewer
AD patients than caregivers expressed interest in each of the topic, the topics in which the
largest proportion of caregivers expressed interest were remarkably similar to interests
reported by AD patients. All of the topics mentioned above for caregivers, except for dealing
with family and friends, and genetic aspects of AD, were included in patients' top 10 areas of
interests.
Research has increasingly shown that electronic resources, and in particular online discussion
groups and internet forums, play a significant role in provision of support and advice to those
looking for information related to health issues (Ruthven et al, 2018; Drentea and
Moren-Cross, 2005). Although there are several websites providing information to AD
patients and their caregivers in Croatia, there is a gap in interactive electronic resources such
as online discussion groups. Currently, the only online discussion forum for this purpose is a
general discussion forum Forum.hr.
The study presented in this paper aimed to contribute to the emerging information science
interest in AD (Erdelez et al, 2015), especially the literature on information needs of AD
patients and their caregivers through exploration how these needs are expressed via online
discussion posts in Forum.hr. In this paper we present only a portion of obtained results,
specifically the quantitative findings on the frequency of the posts, their characteristics and
the characteristics of the people contributing the posts. The study was conducted to address
the following research questions:
1. What is the frequency of the initial posts and answers to these posts on Forum.hr?
2. What are the demographic characteristics of the posters, in particular their gender and
their relationship with the AD patients?
Methodology
The data for this study came from Croatian largest online forum entitled Forum.hr. This is a
general-type forum with discussions on various topics. We concentrated on the topic
Alzheimer's disease (http://www.forum.hr/showthread.php?t=143099), which is available in
the forum Health. The discussion dedicated to this topic was started in 2006 and is still active.
The dataset included all the posts over a span of 13 years (period between May 3rd, 2005 and
November 19th, 2018). We analysed a total of 262 posts posted by 79 unique individuals.
Results and discussion
According to our data, there were altogether 75 initial posts, defined as the posts that started a
new discussion. This is an average of 5.8 posts per year. There was a total of 187 answers,
defined as the posts that responded to the initial posts. This is an average of 14.3 answers per
year. The initial post to answer ratio is 1:2.49. The total activity (initial posts and answers) in
the the data set was 262 posts, with an average of 20.2 per year.
As shown in Table 1, the years 2007 (11 initial posts, 28 answers), 2014 (11 initial posts, 29
answers) and 2016 (12 initial posts, 32 answers) were the most active years when it came to
posting. There were fewer initial posts compared to answers. In as many as 10 years (76.9%)
there were fewer than ten posts per year. In five individual years (38.5%) there were fewer
than ten answers per year, in additional five years (38.5%) there were 10-19 posts a year, and
in three years (23.1%) the number of posts was higher than 20.
Table 1. Number of initial posts and answers per year
Year
Initial posts
Answers
TOTAL
2006
2
2
4
2007
11
28
39
2008
6
10
16
2009
4
19
23
2010
4
6
10
2011
2
9
11
2012
5
10
15
2013
5
15
20
2014
11
29
40
2015
5
17
22
2016
12
32
44
2017
2
4
6
2018
6
6
12
TOTAL:
75
187
262
Figure 1 below illustrates the ratio between the number of initial posts and the answers per
year. It demonstrates that the number of answers is often more than twice as large as the
number of initial posts. The figure also shows that there were three peaks regarding online
forum activity (years 2007, 2014 and 2016). In 2017 there was a drastic drop (e.g., in relation
to 2016 the activity was reduced by 86.4%) in the activity.
Figure 1. The ratio of initial posts and answers.
We also analysed the data for how often the initial posts received answers. Table 2 shows the
years where initial posts prompted no answers and those where they prompted multiple
answers. The 'multiple answer' is defined as an initial post receiving more than one answer on
the forum. If the initial post received no answers on the forum, this may indicate that either
the topic of the post was not interesting to the other forum posters or that they did not know
the answer to the question posted. Our dataset had 37.3% unanswered initial posts. The years
with the highest number of such posts were 2007 (6 posts), 2010 (4 posts), and 2018 (4 posts).
On the other hand, 18.7% of initial posts received multiple answers. The years with the
highest number of multiple answers were 2016 (6 multiple answers), 2014 (5 multiple
answers) and 2007 (5 multiple answers.
Table 2. Initial posts without any answers and with multiple answers
Year
No answers
Multiple answers
TOTAL
2006
0
0
0
2007
6
5
11
2008
2
2
4
2009
2
3
5
2010
4
1
5
2011
0
1
1
2012
2
3
5
2013
0
3
3
2014
3
5
8
2015
1
4
5
2016
3
6
9
2017
1
1
2
2018
4
1
5
TOTAL:
28
35
63
The average length of an initial post was 187.7 words, with the shortest initial post of only 4,
and the longest of 1088 words. The most frequent values were initial posts with either 9 or 14
words, whereas the central value among the initial posts was a post that had 94 words.
The average length of an answer was 125.9 words, with the shortest answer of only one word
and the longest of 1273 words. The most frequent values were posts with either 30, 67 or 117
words, whereas the central value among the answers was a post that had 91 words.
Table 3 illustrates the relationship of posters to AD patients. The highest number of posts
were posted by AD patients' daughters (23). They are followed by granddaughters (11) and
sons (8). In the category 'Other' there are five female posters: a wife, two girlfriends whose
boyfriends' parents are AD patients, a person who trains therapeutical dogs and a nurse
working in a nursing home. Those posters discuss their relatives with AD who are their
mothers (23), grandmothers (12), fathers (10), grandfathers (3), aunts (2), uncle (1), grand
grandmother (1).
Interestingly, there was one young poster (female, in her twenties) who inquired about
symptoms because she was afraid she might have developed early symptoms.
Table 3. Posters and their relationship to AD patients
Posters
Frequency
Gender
Daughter
23
F
Granddaughter
11
F
Son
8
M
Grandson
5
M
Other
5
F
Niece
4
F
Grand grandson
1
M
Undefined
22
F/M
Females were the most frequent posters (Figure 2) in our dataset, which indicates that they are
the chief caregivers of AD patients in their families. The patients they care for are also
predominantly female (38 females, 14 male).
Figure 2. Gender distribution among posters
The highest number of initial posts were entered by two posters, each with 6 initial posts and
both daughters whose mothers had AD. The other posters usually posted between 1-3 initial
posts. The most frequent number of initial posts per a unique poster was one. The highest
number of answers were posted by four participants (from 14 to 25 posts respectively). All
answering posters were also daughters whose mothers were sick. Slightly more posters
entered initial posts (57 out of 70 or 72.2%) than was the case with those supplying answering
posts (48 posters out of 79 or 60.8%).
Conclusion
The aim of the study reported in this paper was to explore the patterns of online forum posting
activity related to Alzheimer disease on the largest Croatian online forum Forum.hr. The
research has shown that online discussions and Internet forums provide a great degree of
support and advice to those seeking information, support and social interaction with alike (e.g.
Ruthven et al, 2018; Drentea and Moren-Cross, 2005). The data set included posts from
2006-2018. During that time span the intensity of postings varied from year to year. There
were several peak years but also years with very low frequency of posting. At this point there
is no clear conclusion about the overall trend in posting frequency.
The number of initial posts (average 5.8) was more than two times lower than the number of
answering posts (average 14.3), which indicates that initial posts were related to highly
important topics for posters and triggered a lot of consequent posting activity. Our results
show that close to 20% of initial posts resulted in multiple answers and were responsible for
almost 80% of forum activity. We can conclude that our posters' behaviour is consistent with
the Bradford law. Initial posts were, on average, slightly longer (187.7 words) than answers
(125.9 words) but the central values (median) for both groups were very similar (94 words for
initial posts and 91 words for answering posts). Also, our research showed that the posters are
dominantly women – they are mostly daughters who are looking for support and answers in
relation to care of their sick mothers.
Although the study reported here is an exploratory study, with its limitations, it is believed it
provides a useful example of a methodological approach to collecting data from the online
health discussion forums and produces an insight into AD discussion posts in a Croatian
context. Hopefully, the study will pave way for future, much more comprehensive
investigations of this topic, which will identify information and service needs of AD patients
and their caregivers, in particular as they change over time.
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