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› Choose a creative work (ie book, movie, series of artworks) that explores an illness experience as a central theme of the work.

› You will submit a piece of written work (2000 words) that explains:

› 1) how your chosen creative work reflects the illness experience as it is expressed in the qualitative research literature ie, what themes in the literature seem to resonate with themes in the creative work. You should reference a minimum of 8 qualitative articles to support your writing.

› how your chosen creative work captures elements of theories of subjectivity that are relevant to the particular illness (examples might be biographical disruption, emotionality, abjection, lived temporality, stigma, the disciplined body, etc.)

Under what paradigm do these ideas sit?

How do people reframe their lives around illness?

What is hospitalisation like?

How does illness affect the family?

Why do we need this content?

Why do we need this content?

Alzheimer's Disease: Symptoms and Stages

An illness trajectory is known to focus on the experiences of an individual as they complete the journey of life after development of the illness. Though experiences of illness might be varying among individual, common themes emerge from such experiences on the basis of qualitative research studies.  The present assignment is based on a creative work, the movie ‘Still Alice’ that has an illness experience as a central theme. The essay aims to describe how the chosen creative work is a reflection of the illness experience as it is expressed in the qualitative research literature. The themes embedded in the creative work resonating with themes in the literature are highlighted. It further aims to highlight how the selected creative work captures the elements of theories of subjectivity relevant to the particular illness. A conclusion summarizes the main elements of the experience that would guide a nurse to understand such a person presented in the creative work at the centre of their care.  

The movie ‘Still Alice’, directed by Wash Westmoreland and Richard Glatzer had been released in the year 2014. It is an adaption of the acclaimed novel of Lisa Genova in a faithful version, and has received numerous awards since its international release. The main character in the movie is Alice Howland who is a renowned linguistics professor at Columbia University, and is happily married to a physician, named John with three grown up children.  In retrospect the viewers realize that Alice begins to show the subtle signs of familial Alzheimer’s disease. When the 50 year old woman is diagnosed with early-onset Alzheimer’s disease, Alice and her family struggled to cope up with the distressing and vexing challenge. They face the gradual changes brought about by the terminal degenerative neurological ailment, slowly progressing to an inevitable conclusion. Along the path, Alice is found to be struggling to fight the inner decay, and find peace and love to make the living worthwhile. The film portrays how the once-vibrant woman faces the challenges of being self as long as possible, as her children watch helplessly. The viewers are able to follow the disease progression experienced by Alice, her deterioration, the strategies used for coping with the ailment and the effect on social relationships (Hepburn, 2015).


The primary focus of the movie ‘Still Alice’ is on Alzheimer’s disease and the movie has been successful in portraying multiple signs of the condition across the three distinct stages of it. Alzheimer’s disease is a common form of dementia that is known to cause memory impairment, along with decline in behavior and thinking ability. The impairment with the cognitive abilities are severe enough to cause interference with the daily activities of life. Alzheimer's disease is known to account for almost 60 to 80 percent of all dementia cases (Solomon et al., 2014). Though aging is a risk factor for developing the condition, it is not to be considered as a normal part of aging. Alzheimer’s is a progressive disease and it worsens over time. While in the early stage the extent of memory loss is mild, individuals at later stage of the condition do not have the ability to respond to the surrounding environment (Yektatalab, Sharif, Kaveh, Fallahi Khoshknab & Petramfar, 2013).

Movie Accuracy and Inaccuracies

Mild cognitive impairment in Alzheimer’s disease is the gentle decline in the individual’s cognitive abilities as the person develops a compromised ability to think. Though this is noticeable, it is not deliberating. It has been understood from literature that people suffering from mild cognitive impairment tend to experience forgetfulness as evident from misplacement of objects, forgetfulness regarding appointments and having difficulty in remembering individuals they meet (Prorok, Horgan & Seitz, 2013). In the film ‘Still Alice’, Alice is found to be referring to her condition as mild cognitive impairment at the initial stage. However, the symptoms that she demonstrates fit the accurately the profile for early stage Alzheimer’s disease. Though early stage Alzheimer’s encompasses all the signs applicable for mild cognitive impairment, they are much more intensified. The forgetfulness is more deliberating and frequent. People who suffer from early stage Alzheimer’s face significant issues planning and subsequently organizing tasks that make it difficult to perform the same. Nevertheless, individuals are aware of their personal details and other crucial aspects of their lives (Ilha et al., 2018).  While some health care organizations do not make a distinction between the two conditions, others do, and the movie has been found to be following the second model. The film has been successful in portraying accurately a number of signs of early stage Alzheimer’s. For example, Alice is found to be momentarily not able to think of a certain word during her presentation. Further, at the Christmas dinner, Alice reintroduces herself to her son’s girlfriend in spite of having introduced herself five minutes earlier. Further, Alice is found to be lost while going out to run in the neighborhood, and has moments of not knowing that is in the Columbia university campus where she has worked for years. In addition, she forgets a planned dinner date with her husband John.

Moving further with the movie, the characteristics of moderate stage of Alzheimer’s is highlighted through the experiences of Alice. As the first trace of this stage, Alice wears a bracelet that states ‘memory impaired’. The condition worsens to the degree that she is at high risk of getting lost. Alice is found to be repeating questions and is not able to remember where the bathroom is, leading her to wet herself. After watching her daughter Lydia in a play, Alice is not able to recognize her as her daughter. As pointed out by Lancioni et al., (2009), a person suffering from dementia is likely to suffer from confusion and forget places and environment. Certain section of the population is likely to have bladder problems that worsen over time. The film also shows that Alice has memories of her sister and mother who had died in a car crash long time back when she was eighteen years old. This is typical of patients suffering from Alzheimer’s since individuals retain memories of past events longer than those of recent times (Edmunds, 2018). Further, Alice engages in an argument with her daughter Lydia. Later on she apologizes and confesses that though she remembered she had a fight, she was unable to recall the reason for the same. According to Varela, Varona, Anderson and Sansoni (2011) during the moderate stage of Alzheimer’s, symptoms are much more accurate. Patients have increased difficulty in carrying out regular tasks and daily activities of life become complicated. Changes in personality traits might be evident.  


The late or severe stage of Alzheimer’s is known to involve a distinct intensification of the symptoms suffered in the moderate stage. The most evident change is the increased loss of functions of the individual. Patients are known to fail to understand and recognize the present situations. Further, they might have decline ability to identify individuals, including self. There is a dramatic impairment in the ability of individuals to communicate with others. Along with gradual decline in the physical capability, there is loss of ability to maintain stable mental wellbeing status (Valgardsdottir, Olason, Hannesdottir, Gretarsdottir & Snaedal, 2013). The symptoms might be evident at a very later stage of the disease. Assistance is needed for carrying out daily activities of living such as eating, dressing and bathing (Kallmyer, 2012). The consensus is that patients suffering from later stages of Alzheimer’s and other forms of dementia are not to be left alone since they are at high risk of suffering adverse events (Karlsson, Sävenstedt, Axelsson & Zingmark, 2014). As a reflection of this stage, the scene can be pointed out where Alice is not able to keep track of time. When Johns finds Alice’s phone in the refrigerator, she thinks it has been lost a night back, while a whole month had passes after it being lost. Further, Alice mistakenly calls her daughter ‘Anne’ as she confuses her with Alice’s sister who died long back. While attending her daughter Anna who has recently given birth, Alice forgets that Anna had been pregnant. In the later stages of the disease, Alice is not able to recognize her caregiver after her husband leaves for taking up a job at a different place. A striking evidence of severe form of the condition is gained when at the end of the movie Alice responds to the question of her daughter Lydia by speaking only one word, which is ‘love’. Alice had lost the ability to speak and mumbles to herself.

At this juncture it would be desirable to point out the inaccuracies that are reflected throughout the movie. While a number of themes emerging from literature resonate with what is portrayed in the movie in relation to experiences of illness of Alice, there are inconsistencies in certain areas. The first concern is the time scheme since the pace at which the condition of Alice deteriorates is much faster than what is usually found. Alice’s deterioration is extreme and contradicts literature pertinent to it. Research indicates that decline in dementia patients is gradual, and individuals live for almost ten years after the diagnosis (Yektatalab, Sharif, Kaveh, Khoshknab & Petramfar, 2013).   Further, the explanation provided by the neurologist regarding the decline of Alice is not accurate. At the time when John reports about rapidity of Alice’s decline the explanation put forward is that such is the case with most patients of early-onset Alzheimer. There is a lack of evidence to support it. There is limited information on why some people develop the rapidly progressive version of the condition (Esandi, Nolan, Alfaro & Canga-Armayor, 2017).

In the present section of the discussion focus would be on how the movie captures the theories of subjectivity relevant to the particular illness of Alzheimer’s. The most prominent theory of subjectivity that comes into prominence is the loss of self. When a person is suffering from deteriorating cognitive ability, the sense of ‘being in the world’ slowly declines. The cognitive dysfunction is responsible for eroding the sense of self. Since the process of being into the world is highly disrupted, experiences of being self cannot be retained by the individual (Nettleton, 2013). In the present context, Alice is found to be suffering from Alzheimer’s in which she experiences a fraying of the self. The condition has affected the dismantling of her sense of self until nothing is left. At the end of the movie, the rapid decline leads to loss of intentionality, rationality, consciousness and reciprocity that is related to disintegration of personhood. In the last scene, Alice is found to be unable to even speak in a proper manner. It can be argued that people in a loss of self becomes an ‘empty husk’.


Another noteworthy theory of subjectivity that comes into limelight is hope. The concept is related to feelings of expectations of a positive outcome and the desire for a certain thing to take place (White, 2016). Further, hope is recognized as the active process with the help of which an individual can attain a set of goals through systematic thinking. In addition, hope is considered to be a significant predictor of psychological adjustment to stressful life events. In the context of the movie it is found that Alice does not divulge in her plans and instead takes proactive approach in undertaking an early diagnosis of her condition. After a number of incidents of memory loss, Alice visits the physician and reports about her memory problem. After failure to bring improvement in her condition through memory exercises, she reports back to the physician. The underlying rationale is that she has the hope that she would be able to cope up with the challenges she is facing and fight the disease on her own terms. The third theory of subjectivity that is applicable in the present context is loss. Negative experiences in the social context lead to leads to feelings of loss and grieve. Failure to achieve goals and expectations leads to feelings of being victimized and the individual is not able to recognize the ways in which the situation can be combated (Clarke, 2013). Feelings of loss have been repeatedly linked with denial, disbelief, anxiety, panic and explosive emotions. The first expression of feelings of loss is when Alice has a meltdown after her husband denies the memory issues she has been facing. Another expression of loss is evident when Alice bursts into tears as she no longer remembers while staying at the beach house with her husband.


In conclusion, though the etiology of Alzheimer’s disease might be unique, and care access might be improbable, the issue and dynamics related to the condition are universal. The portrayal an unfolding of the story and the nuanced development of Alice’s situation reverberate as genuine. The movie is efficient in showing how the disease progresses and how a patient feels. The depiction of how social presentations and externalities of self fade is justified. It is understood from the analysis how the established fabric of social and familial connections undergo alteration when a person suffers from Alzheimer’s.  Based on the understanding it can be stated that nursing care for patients suffering from Alzheimer’s disease such as Alice needs to be focused on family care as the primary source of support. Due to degenerative nature and chronicity of the condition, the family members of the patient have the responsibility of promoting the general wellbeing of the patient. Nurses must therefore focus on motivating the family members of the patient to engage in care delivery on a regular basis. Care provided in this manner would delay the manifestation of dementia symptoms. 

References

Clarke, A. (2013). The sociology of healthcare (2nd ed.). Routledge. Retrieved from https://books.google.co.in/books?id=qWDdAAAAQBAJ&printsec=frontcover&dq=health+sociology&hl=en&sa=X&ved=0ahUKEwjL9uq69_jcAhUJtY8KHfKtC_kQ6AEIJjAA#v=onepage&q=health%20sociology&f=false

Edmunds, M. (2018). Challenges Caring for Patients With Alzheimer Disease. The Journal For Nurse Practitioners, 14(3), A7-A8. doi: 10.1016/j.nurpra.2018.01.017

Esandi, N., Nolan, M., Alfaro, C., & Canga-Armayor, A. (2017). Keeping Things in Balance: Family Experiences of Living With Alzheimer’s Disease. The Gerontologist, 58(2), e56-e67. doi: 10.1093/geront/gnx084

Hepburn, K. (2015). Still Alice. The Gerontologist, 55(2), 328-329. doi: 10.1093/geront/gnv017

Ilha, S., Backes, D., Santos, S., Gautério-Abreu, D., Silva, B., & Pelzer, M. (2018). Alzheimer's disease in elderly/family: Difficulties experienced and care strategies.

Kallmyer, B. (2012). The diagnostic experience from the perspective of the person with Alzheimer's disease. Alzheimer's & Dementia, 8(4), P2. doi: 10.1016/j.jalz.2012.05.006

Karlsson, E., Sävenstedt, S., Axelsson, K., & Zingmark, K. (2014). Stories about life narrated by people with Alzheimer's disease. Journal Of Advanced Nursing, 70(12), 2791-2799. doi: 10.1111/jan.12429

Lancioni, G., Singh, N., O'Reilly, M., Sigafoos, J., Pangrazio, M., & Megna, M. et al. (2009). Persons With Moderate Alzheimer's Disease Improve Activities and Mood via Instruction Technology. American Journal Of Alzheimer's Disease & Other Dementiasr, 24(3), 246-257. doi: 10.1177/1533317509332627

Nettleton, S. (2013). The sociology of health and illness. Cambridge, UK: Polity. Retrieved from https://books.google.co.in/books?id=lqPQyS067qsC&printsec=frontcover&dq=health+sociology&hl=en&sa=X&ved=0ahUKEwjL9uq69_jcAhUJtY8KHfKtC_kQ6AEINzAD#v=onepage&q=health%20sociology&f=false

Prorok, J., Horgan, S., & Seitz, D. (2013). Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies. Canadian Medical Association Journal, 185(14), E669-E680. doi: 10.1503/cmaj.121795

Solomon, A., Mangialasche, F., Richard, E., Andrieu, S., Bennett, D. A., Breteler, M., … Kivipelto, M. (2014). Advances in the prevention of Alzheimer’s disease and dementia. Journal of Internal Medicine, 275(3), 229–250. https://doi.org/10.1111/joim.12178

Valgardsdottir, A., Olason, D., Hannesdottir, K., Gretarsdottir, E., & Snaedal, J. (2013). Subjective experiences following a diagnosis of Alzheimer's disease. Alzheimer's & Dementia, 9(4), P745. doi: 10.1016/j.jalz.2013.05.1502

Varela, G., Varona, L., Anderson, K., & Sansoni, J. (2011). Alzheimer’s Care at Home: A focus on caregivers strain. Professioni Infermieristiche, 64(2), 113–117. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3662364/

White, K. (2016). An Introduction to the Sociology of Health and Illness. Sage. Retrieved from https://books.google.co.in/books?id=8yh4DQAAQBAJ&printsec=frontcover&dq=health+sociology&hl=en&sa=X&ved=0ahUKEwjL9uq69_jcAhUJtY8KHfKtC_kQ6AEILDAB#v=onepage&q=health%20sociology&f=false

Yektatalab, S., Sharif, F., Kaveh, M. H., Fallahi Khoshknab, M., & Petramfar, P. (2013). Living with and Caring for Patients with Alzheimer’s Disease in Nursing Homes. Journal of Caring Sciences, 2(3), 187–195. https://doi.org/10.5681/jcs.2013.023

Yektatalab, S., Sharif, F., Kaveh, M., Khoshknab, M., & Petramfar, P. (2013). Living with and Caring for Patients with Alzheimer’s Disease in Nursing Homes. Journal Of Caring Sciences, 2(3), 187-195.

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