Introduction
Alzheimer’s disease (AD) is the most common form of dementia, characterized by a decline in cognitive functioning and memory loss (Alzheimer’s Association, n.d.). AD is a neurodegenerative disease, occurring in progressively worsening stages accompanied by an intensification in cognitive decline (Wang et al., 2018). The most common form of AD is late-onset, affecting individuals who are 65 and older (Wawrziczny et al., 2018). On the other hand, one of the rarest forms of AD is early-onset familial, affecting persons as young as 30 through genetic mutations (Alzheimer’s Association, n.d.). There is no cure for familial AD but current treatments minimize the symptoms (Alzheimer’s Association, n.d.).
In the United States, 5.7 million people are living with AD and the number of cases is expected to double by 2050 (Alzheimer’s Association, n.d.). Of this number, approximately 200,000 individuals are living with early-onset AD, comprising 4% of total AD cases in the United States (Alzheimer’s Association, n.d.). For people aged 65-74, there are 2 new cases of AD per 1,000 people per year and cases increase with age (Alzheimer’s Association, n.d.).
The author decided to watch the film Still Alice to enhance her understanding of AD. After visiting a peer who works at a long-term home for persons living with dementia, the author further understood the implications of living with AD on persons and their families. This film provides insight on how persons with AD are often viewed as lacking intellect when in reality, AD is responsible for their declining mental function.
Still Alice
Based on the novel by Lisa Genova, Still Alice is a 2014 American drama told from the point of view of Alice Howland, the main protagonist. A fifty-year old Linguistics professor at Columbia University, Alice lives with her husband, John, who is a cancer cell biologist. She has three children: Tom, a clinician; Anna, a lawyer and Lydia, an actress. One day, Alice loses her train of thought while lecturing a class full of students. A few weeks later, she gets lost while going for a run on Columbia University’s campus. Finding the symptoms unsettling, Alice decides to visit a neurologist who later diagnoses her with early-onset familial AD. The diagnosis takes a devastating toll on Alice as she relies heavily on communication and interpersonal interaction for both her career and in maintaining her personal relationships. Her experience of living with the disease also heavily affects her husband, who struggles watching his wife’s condition deteriorate. The symptoms get progressively worse and towards the end of the film, Alice is barely able to speak. Nonetheless, through reminders from her children and husband, Alice remains aware of the support she has from her family members. The central themes of the film are Alice’s encounters with medical professionals, her experience with personal biographical disruption and repair, as well as her caregiving relationships with family.
CRITICAL ANALYSIS
Still Alice portrays the experience of an individual living with early-onset AD. The film provides an opportunity to understand the progression of AD and the effects the disease has on the family unit, making it suitable for both adolescent and adult audiences. This film is also suitable for individuals living with chronic diseases themselves, as they can find solace in connecting their lived experience with Alice’s experience. The film addresses the interests of audience members motivated to learn about the adversity individuals with AD endure and how persons living with AD, like Alice, are able to persevere through challenges that arise.
This particular film is distinct from other films that discuss dementia because it is told from the point of view of the person living with AD. It emphasizes Alice’s attempts to cope with her degenerative condition while maintaining control of her livelihood. Additionally, other films about this topic often depict the experience of late-onset dementia patients living in long-term care facilities. In Still Alice, Alice maintains some level of independence with her early-onset AD diagnosis by continuing to live at home and through being primarily cared for by her spouse. The impact of encounters with physicians, biographical disruption and repair, as well as caregiving relationships are themes that will be explored in this paper.
Medical Encounters
Clinicians can negatively affect a patient’s hospital experience through a lack of information provision. Physicians follow the medical model, which expresses that illnesses are caused by bacteria, accidents or like in Alice’s case with AD, genes (Jutai lecture on Theories and Models). Adhering to the medical model, physicians look for patterns in symptoms and order medical tests to accurately classify a disease. In Still Alice, Alice’s neurologist requests she complete medical tests, including an MRI and a PET scan, in order to check for consistencies with AD symptoms. The neurologist does not explain the reason for requesting these tests to Alice. The lack of information provided causes distress for Alice, which is shown through her agitation. When Alice is eventually informed of her early-onset AD diagnosis, her emotional response is further intensified. Research by Bailey, Dooley and McCabe (2018) shows that physicians often shroud information from patients with dementia to avoid dealing with emotional responses, such as anxiety and irritability. However, research shows that when patients continually receive adequate medical information regarding their procedures, they are less likely to exhibit strong emotional reactions (Bailey et al., 2018). In both the film and the literature, it is evident that limiting information to persons living with AD who value having knowledge about their condition, has negative consequences.
Physicians have the ability to provide patients control in their medical decisions through the use of empowering care, which fosters independence (Jutai lecture on Adults’ Experiences). A study by Hamann et al. (2011) was conducted to determine how important medical decision-making was to early-stage AD patients. The study found that most patients want to participate in their medical decisions and prefer when their caregiver takes a secondary role. When caregivers try to control the patient’s medical decisions, physicians ensure that family members are not overruling the patient’s interests (Hamann et al., 2011). This finding is consistent with Alice’s experience during her medical encounters. After Alice is diagnosed with AD, John attempts to control decisions regarding Alice’s treatment options, which do not align with her interests. Corresponding with the literature, the neurologist in the film Still Alice takes Alice’s interests into consideration before John’s, which helps Alice maintain a sense of control in managing her AD. Through providing patient-centered care that emphasizes the lived experience of the patient, physicians can improve medical encounters (Robinson, Bamford, Briel, Spencer & Whitty, 2010).
Biographical Disruption and Repair
Certain conditions “progress in severity…some with sudden decre-ments in functioning” (Olkin, 1999, p.241). When an individual is diagnosed with a chronic, progressive illness, they undergo biographical disruption, a phenomenon demonstrating how a person revises their biography to accommodate for their illness (Jutai lecture on Adults’ Experiences). In a study by Harris and Keady (2009), twenty-three people diagnosed with young-onset dementia were interviewed to determine how their identities as workers and family members were impacted by their diagnosis. The study found that participants felt that they lost their sense of self and had limited support in restoring their identity (Harris & Keady, 2009). Since this research was conducted, persons living with AD have been provided with more access to support but the process of identity renewal still requires diligence (Roach, Keady, Bee & Williams, 2014).
After being diagnosed with early-onset AD, Alice finds herself feeling disoriented, an emotion indicative of the crisis stage in the emotional grief process (Jutai lecture on Adults’ Experiences). As her cognitive functioning worsens, Alice struggles to teach without forgetting her words and must go on permanent leave. With her career ending, Alice enters the isolation stage, where a person living with chronic illness retreats into their own thoughts (Jutai lecture on Adults’ Experiences). Initially, Alice avoids contact with her family because she believes they do not understand how she feels having to end her career due to AD. The emotions Alice feels due to her diagnosis are consistent with findings regarding emotions of persons living with dementia in the literature. A study by Rabanal, Chatwin, Walker, O’Sullivan and Williamson (2018) found that patients living with young-onset dementia felt devastated having to leave their jobs due to their cognitive difficulties. Subsequently, this study found that when patients living with dementia spent time with family, the resulting social support helped them cope with their losses (Rabanal et al., 2018). Consistent with the literature, once Alice seeks support from family, she is motivated to repair her biography.
After persons living with chronic illness grieve the loss of aspects of their identity, they have the opportunity to seek a renewed sense of purpose, known as biographical repair (Jutai lecture on Adults’ Experiences). A study by van Vliet et al. (2017) observed eighteen patients living with young-onset dementia and found that engaging in leisure activities fostered a sense of identity among participants. This finding is consistent with Alice’s experience in Still Alice. Though Alice does not return to work, she begins spending more time with her children and gets involved in small projects, such as sharing her experience with AD at a conference. The resulting support Alice receives from her family encourages her to maintain an optimistic attitude and gives her strength to repair her biography.
Family and Caregiving
Individuals living with AD often have adult-child or spousal caregivers (Wang et al., 2018). Caregiving requires family involvement at each stage, especially by spouses of persons living with early-onset AD (Jutai lecture on Caregiving). Though caregivers of persons living with early-onset AD are young, these carers experience the same burden as older carers, such as psychological distress, at increased levels (Lockeridge & Simpson, 2013). The distress in young carers is also accompanied by concerns about a loss of identity as a worker, as an emphasis is placed on their caregiver role (Wawrziczny et al., 2018). One study conducted interviews with younger caregivers and found that they had an altered view of their identity after learning about their spouse’s early-onset dementia diagnosis (Ducharme, Kergoat, Antoine, Pasquier & Coulombe, 2013). Caregivers found it challenging to transition from being an every-day partner to full-time caregiver and were fearful of giving up their worker role (Ducharme et al., 2013).
Consistent with the literature, John has difficulty coping with Alice’s diagnosis in the film Still Alice. Like other young-carers, John senses that he will lose aspects of his identity and thus attempts to isolate himself from Alice’s condition. Towards the end of the film, John decides to accept a job in another city because he is no longer able to cope with his wife’s deteriorating condition. By moving away, John is able to maintain his identity as a worker. John’s decisions have negative consequences on Alice, who must continue coping with her condition without the support of her partner. Findings in the literature indicate that patients who have social support while dealing with AD cope better with life-changes (Wang et al., 2018). Further, caregivers are more likely to find their role valuable and achieve personal growth if they have strong social support (Wang et al., 2018). Consistent with the literature, Alice is able to continue coping with life changes when John moves away because her daughter, Lydia, provides Alice support through becoming her caregiver. Unlike recommendations from the literature, John does not seek social support which may indicate why he does not find his caregiving role rewarding. As the film does not depict positive aspects of spousal caregiving expressed in the literature, the film suggests that carers do not achieve favorable outcomes from caregiving. In actuality, many spouses gain a sense of purpose while persevering through challenges when caregiving (Wang et al., 2018).
CONCLUSION
Through an analysis of how Alice takes control of her medical encounters, copes with her narrative being disrupted and how she navigates relationships with her caregivers, it is evident that Still Alice accurately details the experience of persons living with early-onset AD.
The film does not challenge the understanding of experiences presented in the course regarding persons living with degenerative conditions. Still Alice displays concepts explained in the course and expands on them in the context of a person living with early-onset AD. The film
depicts how individuals coping with a decline in mental functioning still have the ability to control their medical encounters. As indicated in the literature, when physicians provide patient-centred care and support to their clients, persons living with AD are able to maintain some level of independence. Still Alice demonstrates that although chronic diseases alter self-perceptions, individuals can eventually repair their biography. Research shows that engaging in purposeful activities, such as spending time with family, provides the support needed to revise the narrative of individuals living with chronic disease. In terms of caregiving, the film shows the effect of early-onset AD on a couple and how spousal caregivers often have difficulty coping with their loved one’s diagnosis. Research evidence suggests that social support can help carers find a sense of purpose while caregiving.
While the course touched upon the central themes of the film, there were aspects of the illness experience that were found in both the film and the literature that were not presented in the course. Both the film and literature express challenges specifically faced by young spousal caregivers, such as the loss of identity as a worker. According to the literature, a spouse would ideally seek resources such as support from social networks to help revise their biography. However, as evidenced in the film, some caregivers choose to avoid any inconvenience, isolating themselves from their loved one’s condition. Additionally, the film and literature demonstrate how social support from family members has a positive impact on persons living with AD, especially in repairing their narrative while their cognitive function continues to decline.
The author would highly recommend this film to other students learning about experiences of illness. The portrayal of a person living with AD is painfully realistic, allowing the viewer to vicariously experience the same powerful emotions. Through providing insight on the lived experience of individuals living with AD, Still Alice does not disappoint. The film leaves viewers hopeful that even when living with a chronic illness, it is possible to live a fulfilling life.