Alzheimer’s Disease and Dementia Awareness
Consumer Health Decisions
Meryl Abag
Introduction
Alzheimer’s is a progressive, degenerative disorder that attacks the brains nerve cells, or
neurons resulting in loss of memory, thinking and language skills and behavioral changes. This
disease affects 26.6 million individuals around the world right now and is only getting worse.
According to Anne Stone the author of “Sources of Uncertainty: Experiences of Alzheimer’s
Disease” she states that “The world’s population aged 65 and older is growing at an
unprecedented rate of 800,000 people per month” which means that this disease has a significant
chance of affecting far more elderly people than it has in the past. The most important thing
Americans keep in mind is that being informed on a life changing disease like this can make all
the differences later in life whether it is regarding themselves or a loved one. Also that there is
hope, treatment options are being discovered and in time it is possible for more efficient
improvements to be made. Howard Chertkow the writer of “Diagnosis and Treatment of
Dementia: Introduction” discussed that the treatment process for Alzheimer’s and Dementia has
made improvements. “Memantine has been introduced in Canada. This antagonist to glutamate
receptors has a small beneficial effect in cases of moderate to severe Alzheimer’s disease but it
has not been shown effective in the mild stages.” With small progress being made and awareness
being raised about this disease Americans can prepare themselves for all types’ scenarios in the
future. In this research project we are finding out how informed the community of Glassboro,
New Jersey is with Alzheimer’s and Dementia disease. We also had high hopes of informing our
peers of this disease that is not prevalent in young people’s lives but has all the ability to catch
up to them in the future.
Review of the Literature
The number of people with Alzheimer’s disease is on track to increase exponentially
within the next 25 to 40 years. As stated by Anne Stone and Christina Jones, authors of Sources
of Uncertainty: Experiences of Alzheimer’s Disease, the number of people suffering from this
disease is set to increase to about 1 in every 85 people by the year 2050 (Stone 2009). Increase in
the number of people suffering from the disease will also cause an increase in the number of
family members and loved ones affected by the disease. When looking at this mental illness the
thoughts, feelings, and actions of the relatives of Alzheimer’s disease patients also have to be
taken into account because, in most cases, these relatives are the primary care givers.
Stone and Jones highlighted in their study that providing care for a patient with
Alzheimer’s disease is challenging due to communication and care issues. In addition to
communication issues these researchers found that uncertainty in many cases. Participants of this
study found that they experienced medical, personal, and social uncertainty.
The medical uncertainty experienced by the participants was related to an array of issues
specific to this disease. A few of the factors that lead to uncertainty among the care givers were
pattern of symptoms, challenging decisions regarding treatment and a lack of information
supplied regarding the disease. These factors contribute immensely to the lack of confidence and
knowledge of the caregivers for these patients.
Social uncertainty stems from the belief that one will be judged by their peers because of
the way they are caring for their relative with Alzheimer’s disease. Specific social issues that
concerned participants were fluctuating social experiences and sibling communication regarding
the patient. These were just a few concerns regarding the social uncertainty experienced by the
participants. While these issues may seem minute, they are sources of very real concern to care
givers of Alzheimer’s patients.
The final area of uncertainty that was experienced by these participants was personal
uncertainty. Participants reported personal uncertainty regarding financial responsibilities and
genetic predisposition to the mental illness. These factors were of great concern to the
participants because they were unsure if they would develop the same mental illness as their
relative or how likely this development would be. This lack of knowledge causes a great deal of
concern and confusion amongst caregivers and is a true threat to the quality of care for patients
of this mental illness.
Alzheimer’s disease is a mental illness that currently affects millions of people. Although
there are millions of people with Alzheimer’s, there are about half as many people suffering from
another brain disorder called Dementia. As described previously dementia is a progressive
degenerative disorder that attacks the brain’s nerve cells resulting in loss of memory, thinking,
language skills and behavioral changes. There is no cure for these mental illnesses, however;
measures have been taken to attempt to develop a treatment regiment for dementia.
Howard Chertkow, author of Diagnosis and Treatment of Dementia: Introduction, stated
that Memantine, a medication used to treat Alzheimer’s disease symptoms, had been introduced
in Canada (Chertkow 2008). This drug has been moderately effective in patients suffering from
moderate to severe Alzheimer’s disease, but it has shown no effect in patients suffering from
mild Alzheimer’s disease. Many doctors are uncertain about the affects of this drug and have
tried supplements such as Vitamin E as a possible combatant to this disease (Chertkow 2008).
Since the study the idea of use of this supplement as a treatment has been disregarded. Therefore,
a cure or treatment for this mental condition is still being researched.
(Part 2 of Literature)
In the article “Knowledge of memory aging and Alzheimer’s disease in college students
and mental health professionals,” in relation to our research, proved the importance of one’s
knowledge about Alzheimer’s disease. First, it is important so that people have accurate
expectations for elderly persons to avoid ageist stereotypes. “Identifying knowledge of memory
aging can provide the basis for educational programs for students, caregivers and other health
professionals who work with elderly adults.” (Jackson, Cherry, Smitherman, & Hawley, 2008) In
relation to our research, the purpose of the surveys were to gather how much information the
Glassboro community has about dementia and Alzheimer’s disease to determine the basis for
educational programs and preventative measures. From the article, evidence revealed that “ageist
attitudes declined with increased life experience… Professionals were more knowledgeable and
held less ageist attitudes than college students because of the years of experience professionals
had”. I thought this was significant because based on the results of our survey, more students
were knowledgeable of our facts compared to the adults who took the survey. Although there
were limitations; the amount of adults vs. the amount of students surveyed are rather biased.
Furthermore, the information retained after education increased in both students and
professionals, compared to the information they knew prior to education. Nonetheless, a good
background of information in memory aging vs. Alzheimer’s disease is imperative for
educational programs as well as overall awareness of the different aspects of dementia that can
detect early signs of Alzheimer’s disease.
Which leads to the next article, “Personality changes in patients with beginning
Alzheimer’s disease.” The article is basically “a test of personality traits between patients with
beginning Alzheimer’s disease vs. a mentally healthy control subject and how personality
changes may be early signs of Alzheimer’s disease.” (Pocnet et al. 2011) In this research article
they tested about 54 patients with mild Alzheimer’s disease and 64 health control subjects. In
this research they used structured interviews for the Five-Factor Model to describe their
personality traits and compared it with a revised Personality Inventory filled by family members.
The Five-Factor Model consists of a test in 5 main independent dimensions called Neuroticism,
Extraversion, Openness, Agreeableness, and Conscientiousness. Four out of five factors revealed
to be significantly higher than the healthy control subject, Agreeableness being of mutual range.
As a result, study proved that “current personality features of patients with beginning
Alzheimer’s disease are different compared with those in normal healthy control subjects due to
higher mean scores of dimensions in the Five-Factor Model. Despite the limitations of measuring
personality changes such as memory bias during self-evaluations, the resulting facts are
beneficial and coincide with our research because such knowledge in early symptoms of
Alzheimer’s disease can help in taking preventative measures of early symptoms of Alzheimer’s
disease. Hence why it is beneficial to be knowledgeable of these facts at an early age, prior to
entering health professions such as health promotion and fitness management- so that when we
are dealing with elderly persons we can be knowledgeable in helping one succeed with
Alzheimer’s disease or without.
Methodology
The study participants for the Alzheimer’s & Dementia research project were people
located in Glassboro, New Jersey at the time the survey was distributed. The participants were
friends, family and classmates of each individual in the group along with individuals not known
as well. More than half of the surveys completed were friends from Rowan University of each
group member. The remaining were outside friends or students in classes of the individual that
distributed them. In order to recruit them, each group member called and asked friends at Rowan
if they would complete the survey. Another set of surveys was distributed to people in a class.
Fifteen more surveys were left on a table at a gathering for people to fill out. There was no
specific criterion as to who was allowed to complete our survey. If the individual asked had time
to complete the survey and didn’t mind spending time on it than they completed it. If the
individual didn’t want to, they weren’t forced to.
Each member in the group collected their data differently. One member of the group went
around Chestnut Hall between the hours of 3-5 P.M. on April 16, 2012 to ask people to fill out a
survey for her class. She had gone to every floor to her friends or people that she recognized
from her classes. Also, she had collected a few surveys in her Elements of Dance class located in
Memorial Hall at 9:25 A.M. on April 17, 2012. Another member of the group went to Magnolia
and Willow Hall to get 15 other people to fill out surveys on the same day at the same time. All
the Halls are located on the campus at Rowan University. Any student that answered the door
was eligible to fill out a survey. One member went around her dorm at Mimosa Hall between 710 P.M. to her friends that lived on every floor of the building. Another individual in the group
collected her data in her Anatomy & Physiology II class located in the Science Building. From
12:15- 12:25, she handed out 6 surveys for people who had arrived early to class to fill out, and
then at 1:40 the remaining surveys were distributed out to her class. A member of our group
decided to hand her surveys out at a family party between 8-8:30 P.M.. The party was located in
Glassboro on April 17, 2012. The second to last member of the group handed her surveys out on
April 17, 2012 late morning/ early afternoon between the hours of 11-2 P.M. Her surveys were
handed out in Willow Hall located on Rowan’s campus but she had made sure that anyone taking
the survey hadn’t taken the survey before with the other member of the group. Lastly, a member
of the group handed his survey out in Edgewood Park Apartments, located on Rowan
University’s campus, between the hours of 9-11 P.M. to all of his friends and neighbors that
lived there.
While creating our survey, we decided that we wanted it to be easy for the person taking
it to understand. Although we made the layout easy to follow, we wanted to make sure that the
information was truthful and helpful to collect the data that we were studying. Our pilot test of
the survey was when we each took it. We decided that if we all could fill out the survey and it
took under 10 minutes, it would be easy for other people to fill it out and wouldn’t be a problem.
As a result, we all agreed that the survey was perfect to send out to others in Glassboro.
Results
Considering that the purpose of our research was to determine how aware the local
community was about Alzheimer’s disease and dementia, we distributed a 10-question survey to
105 participants located on Rowan campus and/or around the community of Glassboro. There
was a high percentage of 85% of participants surveyed on Rowan campus and 15% off campus.
There were a total of 60 males (57%) and 40 females (38%) that completed our survey all
varying from ages 18 and older. After reviewing all of their answers, we came to conclusion that
less than 50% knew about this disease. Our first question asked if they knew someone with
Alzheimer’s disease and only 40% did, leaving 55% not knowing much about it. When asked
what age it usually started and the sex most affected, the percentages of right answers were 23%
and 40%, which is fairly low. The number of people diagnosed with this disease will double by
2050, according to Healthy People 2020, making us believe that there will not be an affective
cure in the future. Two of our questions asked the participants if it would double and if they
thought there would be a cure. Sixty-two percent said no and that there would indeed be a cure,
leaving us with the assumption that they were not informed enough on this topic. Knowing about
Alzheimer’s is very important in this world, today, considering how rapidly the numbers of
diagnoses are increasing, which is why we want to increase awareness of young people and this
specific disease. What we were not surprised with was that most of the participants that did not
know a lot about Alzheimer’s were under the age of 21. The few that we surveyed that were 21
and older seemed to know a lot more than those younger than them. On the other hand, what our
participants did know was that Alzheimer’s was hereditary (73%), but only 42% knew a way to
stimulate the memory. While doing our research, we were hoping to have a higher percentage in
the end of correct answers, but this just concluded that the local community of Glassboro is not
aware about Alzheimer’s disease and dementia.
Discussion
Our research was aimed to gauge the overall awareness of Glassboro residents on
Alzheimer’s disease and Dementia. To assess the awareness of Glassboro residents, we
composed a survey to that included questions aimed to assess knowledge on specific aspects of
these mental illnesses. Following the calculation of our survey, we noticed there are not many
students who are informed about Alzheimer’s disease and Dementia.
After distributing our survey we found that there were a few limitations. One limitation
was that our survey sample was biased. It was biased because only 100 surveys were distributed,
this sample size is not indicative of all Glassboro residents. Of the 100 surveys distributed 85.8%
(90 people) were Rowan University students. Glassboro residents, outside of Rowan University
students, accounted for only 14.2% (15) of the people surveyed. Another limitation of our survey
was access to Glassboro residents. A few of the researchers in this study only had access to
students of Rowan University. For this reason, the primary participants in this study were Rowan
students and the surveys mainly reflect the knowledge of this group toward these mental
illnesses. To take part in this survey there were a few requirements. The participants of this
survey were required to be aged 18 and older and a resident of Glassboro.
Our research group found the results of our survey were somewhat predictable. Prior to
completing the project our research group expected to find a low level of awareness about these
mental illnesses. Our survey results confirmed this expectation. Although the group found some
results predictable, there were a few findings that were surprising. During the course of our
research, the group found that patients of Alzheimer’s disease could sometimes forget how to
breathe. The questions on the survey aimed to determine how many Glassboro residents were
aware that Alzheimer’s disease has the ability to cause a patient to forget to breathe. Through
research, the group found that this is possible because the disease deteriorates the brain and
causes a patient to forget how to do very many things. Breathing is one example. The research
group found that 40% of the participants knew that Alzheimer’s disease has to ability to cause
this problem. Adversely, 60% of the participants were unaware of this fact.
Quite frankly there were things that we did expect people to know and what not to know.
For instance, we expected people to know that Alzheimer’s and Dementia can be hereditary and
we didn’t expect them to know a lot of ways to strengthen their memories, which they actually
didn’t. Even though some of these answers could have just been educated guesses, people still
had a clue of what was true and what was false. Though the results did not quite reach our
expertise, participants did seem to come close to choosing the correct answers in the survey.
If we were to conduct this study again we wouldn’t change much. Perhaps we would
have tried to provide a bit more information such as a brief definition of what Alzheimer’s and
Dementia actually is and how it affects the environment. But other than that, there wouldn’t be
many changes. The research team feels as though we provided enough useful information as
there is.
In conclusion, Alzheimer’s and Dementia is a serious topic that people should know
enough about so they can be aware of symptoms and causes. Being unaware of Alzheimer’s and
Dementia can lead to major problems because someone may not know they have it. The purpose
of this research was to see what knowledge people had on Alzheimer’s and Dementia and to
make them aware of how it has developed and to understand how serious it can be. We were not
only able to see what people knew about Alzheimer‘s and Dementia but in addition we opened
up their minds to become more knowledgeable of it.
References
Jackson, E., Cherry, K., Smitherman, E., & Hawley, K., (2008, March). Knowledge of Memory
and Aging and Alzheimer’s Disease in College Students and Mental Health Professionals. Aging
and mental Health
Pocnet, C., Rossier, J., Antonietti, J., Gunten, A., (2007 July). Personality Changes in Patients
with Beginning Alzheimer Disease. The Canadian Journal of Psychiatry
Certkow, H., (2008 January 29). Diagnosis and Treatment of Dementia: Introduction. Canadian
Medical Association Journal
Stone. Anne., Jones, C., (2009). Sources of Uncertainty: Experiences of Alzheimer’s Disease.
Issues in Mental Health Nursing