Proposal

                                                                                                                        Victoria Branham

                                                                                                             Neuroscience

Tongan Perceptions of the Elderly

A Field Study Proposal

  Statement of Intent                                                                        

  This study will examine the Tongan perceptions of aging and the elderly with an emphasis on how Alzheimer’s is viewed in Tongan culture. The purpose being to determine what the social dynamics are for an individual in Tongan society who can be considered elderly and may or may not have Alzheimer’s disease. Also, for patients with Alzheimer's disease the purpose would be to document how that patient is treated socially. I will look at how all age groups view aging, the elderly, and Alzheimer’s/ dementia and what they think of these people. The final result will be a research paper discussing the social aspects surrounding the elderly and Alzheimer’s disease in Tongan society and how their culture influences that.                

My academic interests for participating in a field study this summer stem from a desire to complement my undergraduate degree with invaluable learning experiences abroad. I plan to enter the medical profession upon graduation from BYU and having had experiences in places outside the U.S. will open my eyes to different viewpoints and ways of seeing problems and dealing with people. It also provides me the opportunity to apply my interests in gerontology in a setting wherein I will be conducting and following through with my own research.

     I have always been a person interested in the elderly of society, as opposed to someone who shies from them. I love that they have lived a full life and are brimming with amazing stories and experiences. I find it sad that many people as they reach a certain age are subjected to Alzheimer’s or dementia of some sort in which they lose those memories and the ability to cognitively share them with family and friends. This is what interests me in studying Alzheimer’s disease. I have chosen to take a social look at Alzheimer’s as opposed to a medical one because I am interested to know how their culture views the disease.  The overarching question I will answer is: What are the Tongan perceptions of the elderly and the aging process? What are the Tongan perceptions of Alzheimer’s disease?

I truly believe that I will benefit greatly from a field study because of the unique opportunity it gives to challenge and stretch my abilities in a new culture. Tonga is an appropriate location to conduct this field study because it contains aging and elderly people who have not been studied before. I am certain that I will face many challenges while in the field, but through them I will grow as a person and take back with me much more than I left with.

 Background and Significance/Literature Review

Something, in which no person can claim exception to, something inevitable, is the fact that we will all grow old someday. It doesn’t matter where we are from or where we are going, it doesn’t matter our gender, our skin color, or our height, because everyone grows old.  The study of aging is encompassed by the field of gerontology. Gerontology is officially the “the study of the social, psychological and biological aspects of aging,” (dictionary.com). The field of gerontology is rapidly becoming more relevant in today’s world because of the sheer number of elderly that now live in it. This is partly because of the rapid population boom following World 2, along with the fact that people are able to live longer with todays’ medical advances. With so many people growing old and with the assurance that we all be old someday, does it not make sense to make gerontology an important field to study? I believe that it does and therefore have focused my project around gerontology, specifically how the process of aging and the elderly are viewed in Tonga and how their culture affects that perception with an emphasis on Alzheimer’s disease and how caregivers and families deal with it. Alzheimer’s disease is also becoming more of a problem in today’s world, because as more people grow older and older, living well into their nineties, we begin to see Alzheimer’s disease becoming more frequent. Studying its effects on people can help us understand the disease and how to better treat it.

Alzheimer's disease begins to typically show in people aged 65 and older.  It is estimated, in the United States, that at least one in ten people age 65 or over has Alzheimer's and at least half of people age 85 or over have been reported to have the disease, and this is discounting other dementia related illnesses that can occur in old age. As a matter of fact, it is estimated that Alzheimer’s disease is the sixth leading cause for death in the United States (Alzheimer’s Association, 2012 ).Using the U.S. as a reference, I think it can be assumed, at least in part, that the disease cannot be completely vacant from the beautiful islands of Tonga. In a survey compiled by the Alzheimer's Disease International in 2006, it was determined that the average life expectancy for a person in Tonga was 73 years of age (http://www.alz.co.uk/). With six percent of Tonga's population being 65 and older, it stands to reason that there will be individuals diagnosed with the disease. In Tongan society, where I will be conducting this study, there are no nursing home facilites or communities as elderly are taken care of by their families. Taking care of a family member with Alzheimer’s disease can be a very taxing and difficult task.  In the book "Alzheimer's Disease; Causes, Diagnosis, Treatment, and Care", the authors discuss problems that families who take care of members with Alzheimer's currently face. Many of these problems include depression, high levels of hostility, and ill health accompanied by emotional and physical strain. The effects on caregivers have been reported to be devastating, “as they watch their family member become increasingly confused, incapable of communicating or carrying out everyday activities, undergoing personality and emotional changes, and losing control of elementary physical functions over an unpredictable clinical course averaging 8 to 10 years” (Khachaturian  305). The people in Tonga are just as susceptible as us in the United States, therefore I plan to see how caring for a family member with Alzheimer’s effects them. Especially since the family is a very important unit in Tongan society. My study will be similar to previous studies done on caregivers to patients with Alzheimer's in that I will look at how the families are handling it, are they struggling, sick, angry? My study will differ in that I will take a more cultural outlook on things, see how the Tongan culture may affect the impact on caregivers or if it ultimately has no bearing. My study will also include professional treatments in Tonga for the disease and what the everyday layman thinks of it.

The family system in Tongan society consists of two major groups, the famili (family) and kainga (extended family).A famili consists of a married couple and their children living in the same house and usually includes male and/or female related by marriage. The 'ulumotu'a (head of the family) presides over this group. A kainga consists of relatives living in different households in the same village or in several villages (Bennardo, Tonga). When a family member becomes old, they are taken care of by their families, as they are considered kainga. Family is crucial to Tongans, and so caring for their family becomes important. The elderly in Tonga are very respected, in fact it can be said that out of all citizens they “command the most respect” (Bennardo, Tonga). Studying how the people of Tonga view aging then would be important because of how they already respect them. It is relevant because of how crucial the family unit is to Tongans. They consider family to be so important, therefore it is a great place to see how they view aging and the elderly.

Also, Tonga is a relevant location to study care for the elderly in general, because of how care for the elderly is something shared by the entire family. “Respect for the elderly is a strong pervasive cultural norm, one of which translates to the practice of caring and nursing for one’s elderly parent, being one of a Tongan’s strongest cultural and traditional responsibilities” (Massey University). How fascinating then, is it to see firsthand how this care of the elderly is given within families. Is it a community based care, with extended family or kainga, from all over the village helping out? Or is just within the immediate household? How does the common Tongan citizen view the elderly, their grandparents, or others they may respect? Do they fear the aging process, embrace it? Do they gain status in society as they age? These are all sub questions that I hope to have somewhat of a better understanding of upon my return from Tonga.

Traveling to Tonga and studying how they perceive aging and the elderly is a good idea, first of all because of how little there is currently known about the subject of gerontology in Tonga and secondly because the more you know about the aging process today, the better equipped you will be to handle it when you reach that age yourself.

1.      Alzheimer's Association, 2012 Alzheimer's Disease Facts and Figures, Alzheimer's & Dementia, Volume 8, Issue 2

2.      Bennardo, Giovanni. 2012. Countries and Cultures. Tonga. http://www.everyculture.com/To-Z/Tonga.html 

3.      Binstock, Robert, George, Linda. 2001. Handbook of Aging and the Social Sciences. San Diego: Academic Press. xxiii. pg. 513.

4.      Caregiver Issues. The University of Washington Alzheimer Disease Research Center. http://depts.washington.edu/adrcweb/UnderstandingAD/CrgvrIss.shtm

5.      R.C. Hamdy. Alzheimer's disease : a handbook for caregivers. St. Louis: Mosby, c1998, xxi, 451

6.      Massey University. Tongan Nurses Conference. 2010.“Nursing the Noble Profession: Navigating the Realities of Tongan Nurses”. PACIFIC HEALTH DIALOG APRIL 2010, VOL. 16, NO. 1. Web. http://www.pacifichealthdialog.org.fj/volume16_no1/Abstracts.pdf

7.      Judy Zarit, Steven H. Zarit, Nancy K. Orr. The hidden victims of Alzheimer's disease: families under stress. New York University. 1985. Print.

8.      Khachaturian, Zaven, Radebaugh, Teresa. Alzheimers Disease: Causes, Diagnosis, Treatment, and Care. 1996. Library of Congress

9.      Owings Mills, MD: National Health Pub., Washington, D.C.: American Association of Homes for the Aging. Confronting alzheimer's disease. c1987, xxi, 183.

 

10.  The Global voice on Dementia: Statistics.2009. Web. http://www.alz.co.uk/research/statistics

Methodology and Procedures

The bulk of my research will be centered on elderly individuals, with families of patients with Alzheimer's disease and participation in a hospital setting volunteering with medical professionals as aspects of my study. In general, I will use convenience and snowball sampling to find and interview elderly individuals. A part of my study will be dealing with Alzheimer’s by visiting the local hospital where I will be volunteering and, after obtaining consent via the standard consent form; perform semi-structured interviews with the doctors about Alzheimer's disease. At every interview I will have a translator to help bridge the misunderstandings and frustrations that can arise from the language barrier.

To find subjects I will use snowball and convenience sampling, with the end goal of approximately 15-20 subjects. The age of subjects will vary from the young (over 18) to the old (over 80). I have this broad range because I will be looking at the Tongan perceptions of the elderly and therefore will get as broad a range as possible within their society. I will find and visit a family dealing with Alzheimer's (hopefully more than one family) and introduce myself and my project, if possible. Following which I will ask for consent via the standard consent form to study them and the member of their family with Alzheimer's disease through interviews (both structured and not) and observations.

Methods and procedures of obtaining data stem from my personal observations and information I can glean from interviews and during my hospital volunteering as this is a primarily observational study. For every interview I plan to obtain consent from the individuals and take notes during the interviews. I have chosen the method of interviews because they provide me with the opportunity to ask questions and lead a conversation about my area of research. All interviews will be semi-structured. Sample questions for interviews with people I may run into on a regular basis may include:

1). What age do you consider to be 'old'?

2). Would you ever speak back to your grandparents?

3). Have you ever heard of the terms Alzheimer's or dementia?

4). If not, do you have grandparents? Do you enjoy spending time with them?

5). If so, what is the first thing (or things) that come to mind when you hear the word Alzheimer's or dementia?

6). Do you have any personal experience with Alzheimer's?

7). Would you be afraid of getting the disease yourself and why?

8). Do you fear getting old?

I hope to have these interviews be less structured and more of them leading the discussion with me asking follow-up questions on what they say.

When I interview doctors, I will ask the same above questions, but also include others such as:

1). Do people often come in for the disease?

2). What treatments would you give them? Advice you would tell them?

3). Are there holistic treatments? What have you noticed as a result of these treatments?

I will have them expound upon personal experiences in treating and dealing with patients who are elderly or with Alzheimer's disease, these may be slightly more structured but still following the thread of where what they tell takes me.

Then I come to the families and patients themselves where the bulk of the data will come from. But with it, also the most sensitive topics. I will interview select family members over the age of 18, and ask if I can spend time with their family every once in a while. I will ask if I can observe to learn how they care for the member with Alzheimer's. Questions include:

1). Do you give any treatments or medications?

2). How long have you known about the disease? Has anyone else in your family been diagnosed before?

I will observe and ask how often they are fed and if it is on a different diet. I will observe how family members act around the member with Alzheimer's, whether or not it appears different as seen by myself. Further questions to the caregiver include:

3). Do you get enough sleep?

4). How much time per day do you spend with the family member with Alzheimer's?

5). How many people help out? Is it just you or the whole family and village?

6). How are you doing? Tired often? Sad? Angry or frustrated?

7). Have you noticed if people treat you or your family differently since the diagnosis?

I plan on conducting about 1 or 2 interviews per week after I have built a solid rapport by going on walks, volunteering within the community, helping out at church, and visiting members. This building of rapport will most likely take the first few weeks in Tonga. After I have built rapport, these interviews will last no longer than one hour and occur once with each individual unless I deem that a follow-up interview would be beneficial and they agree. Interviews will occur in a designated place where the subjects feel most comfortable.

Another method I plan to use is that of free listing. I will ask a person to write down all the words that come to mind when I say the words `old', `grandparent', or `Alzheimer's' and from their list delve deeper into why they put what they put. I will use this method because it allows me to understand what they are thinking. Generally old people and Alzheimer's aren't constantly at the forefront of peoples' minds and will therefore take a little bit of gentle probing in the form of free listing.

 Finally, as this is an observational study, I will be using participant observations at all times I can, when I attend public functions with my host family, when I am volunteering at the hospital, and when I am spending time with Tongan families in general. Participant observation is a useful and applicable method because it allows me to observe and take notes on and observe how people interact with the aging and elderly in their society.

Probably barriers include finding a family with Alzheimer’s, the language barrier as I do not speak Tongan, and all cultural differences. If I cannot find a family with Alzheimer’s, then I won’t worry about that aspect of my project, I can gather enough information solely on the Tongan perceptions of the elderly without Alzheimer’s if needs be. I will use an interpreter to account for the language barrier, although I do recognize that an interpreter will bring barriers of their own.

 Ethics and Approval

In order to maintain confidentiality, I don't intend on taking video recordings of my study or audio recordings. However, I will be taking many notes. For example, observations I have made, interviews I have conducted, and collections of people's ideas that come from free listing. These notes I intend to have locked away in my suitcase at all times that I am not with them personally. I will be keeping them for the duration of the study.

            I will make sure that all participants are completely aware that the study is 100 percent voluntary and that they have absolutely no obligation to participate by giving them a waiver and explaining verbally. Also, that if they feel uncomfortable in any way they are welcome to end the interview at any time. Topics breached may be slightly sensitive, so this is necessary. I will conduct myself in such a way that I appropriately represent BYU and leave to door open for many future BYU students to have a positive experience in Tonga after I leave.

 Preliminary Plans for Post-Field Application

Upon returning from the field study, I intend to prepare for submission to the BYU Inquiry Conference and Inquiry Journal sponsored by the Kennedy Center.  I personally recognize that this experience will have an impact on my approach with patients in a medical setting as it will open my mind to cross cultural healthcare. I will also have the opportunity to encourage other responsible BYU students within my major and outside of it to experience a field study of their own.

  Qualifications and Limitations

My project focuses on interacting with people of an elderly population along with all other ages. I currently volunteer with hospice here in Orem, Utah where I have the opportunity to sit, talk, and spend time with older individuals for a few hours at a time within their own homes. What I have learned in my experiences with hospice will be very helpful in helping me deal with the elderly in Tonga.

            I am currently taking the IAS prep course 360R in order to prepare for my field study. Through this class I have learned about different cultures and how best to prepare myself for the experiences, also the types of things I should expect once there. I also attend a Tongan language class, Tongan 102, to help learn a bit of the language and culture.

Faculty Mentors and Coursework

Primary mentor: Cardell Jacobsen- professor of sociology in the Family Home and Social Sciences department here at BYU. He has a PHD from the University of No Carolina Chapel Hill and conducts research within the areas of Race and Ethnic relations, interracial marriage, transracial adoption, social psychology, attitudes and attitude change, and sociology of religion. We have spent a few hours here and there talking about my project, my ideas, and ways he can help. He is a good fit because he has worked with previous students conducting research and has interests within gerontology that line up with my own.

Courses:

IAS 397R: Field Studies Field Course: Foundations to Cultural Knowledge and Immersion- 3.0 credits

SOC 497R: Mentored Research with Cardell Jacobsen- 3.0 Credits

SFL 334: Aging in the Family- 3.0 Credits

 Schedule

May 10th	Arrive in Tonga. Begin building rapport, relationships, friendships, and integrate into the community and culture. Begin observations and looking for volunteering at the local hospital.
May 31st	Analysis of current observations. Revise interview questions, select possible interviewees, begin interviews. Check in with professors.
June 20th	Continue interviews and observations. Making sure to record observations following every interview. Check on possible follow up interviews.
July 1st	Check in with professors again. Review and analyze data. Determine what more is needed.  Continue interviews and volunteering.
August 10th	Review all data. Determine if there is anything still needed or unresolved.
August 31st	Return to Utah for fall semester
September 25th	Course work due for all classes taken during field.
December 15th	Final paper submitted

Budget

As of now, this project is paid for entirely by money saved over several years. I have not received scholarships or grants as of yet, however I am waiting to see if I am eligible for a Kennedy Center scholarship. Below is a list of anticipated expenses.

Airfare- $1,300

Tuition for Sp/Su- $2,280

Money for food and rent- $10 per week at least.